Positive Living

Tools and resources for people living with HIV

Share this

Positive Living - Resources


Share this

Meaningful Involvement of People with HIV/AIDS (MIPA). 8/6/2017

Published by AIDSUNITED

Meaningful involvement of people with HIV/AIDS (MIPA) is about ensuring that the communities most affected by HIV are involved in decision-making, at every level of the response. MIPA requires dedication, planning and assessment, organizational buy-in, and a champion to help usher its development and continued assessment.

This new resource from AIDS United and The US People Living with HIV Caucus shares best practices to incorporate MIPA into your organization, including how MIPA benefits CBOs, tools to assess MIPA at your organization, and mechanisms for greater involvement of people living with HIV.

This work takes time but the investment in MIPA is critical, doable, and well worth the effort.

You can access the resource here

Share this

Putting People At The Heart Of The HIV Response. 17/10/2017


The Alliance uses a person-centred approach to increase access to quality HIV and health services and to realise the human rights of people living with HIV and others affected by HIV.

This means that we look at health from an individual perspective. We consider health as much more than the absence of illness and think holistically about an individual’s full range of needs, desires, capacities and human rights.

Our person-centred approach is based on the values of equality, equity, power and integration, which underpin our interventions at all levels: individual, peers, family and community, services, Alliance practitioners, and the legal and policy environment.

You can access the resource here

Share this

Advice and Resources for Organizations Working With Older HIV-Infected Adults. 8/6/2016

Published by THEBODY

A recent issue brief, "Strategies to Improve the Health of Older Adults Living With HIV," from the National Center for Innovation in HIV Care and other organizations recommends that organizations serving persons living with HIV/AIDS (PLWHA) who are 50 years or older take five actions:

  1. Train staff about this population's unique needs.
  2. Treat clients for comorbidities, depression and cognitive problems.
  3. Screen clients for substance use, especially tobacco use.
  4. Provide targeted sexual health education.
  5. Reduce the social isolation of this population by strengthening their social support networks.

This group not only must deal with the medical conditions common in older adults compounded by HIV infection, but also must often contend with ageism compounded by homophobia and HIV stigma -- besides having possibly lost many friends earlier in the HIV/AIDS epidemic. Depression is more common among older adults in general, as well as among those infected with HIV. Cognitive decline in old age, which could be accelerated by chronic inflammation in the brain due to HIV, can mask the symptoms of depression, the authors caution.

Medical issues more likely to be experienced by older PWLHAs also include pre-existing liver problems due to the greater toxicity of first-generation antiretrovirals, cardiovascular issues from long-term use of antiretroviral therapy and a higher risk of bone fractures from the side effects of some HIV medications combined with more brittle bones in that age group.

In 2013, 21% of new HIV diagnoses in the U.S. were among people 50 years or older. This points to the need for HIV prevention interventions specifically aimed at the older population, including addressing issues of erectile dysfunction, vaginal dryness and gender imbalance in this age group. Prevention messages also must combat the belief that HIV only affects young people, the brief asserts.

Men who have sex with men (MSM) are less likely to have children and grandchildren and therefore might not benefit from the family-based social support networks many older adults enjoy. HIV stigma and fear of casual HIV transmission can further complicate social support relationships. Established community networks, such as those offered by African-American churches, might also not be accessible because of anti-gay stigma. Older MSM can also fear rejection by formal senior care providers, including home health aides, for their sexual orientation and might therefore not seek out such services, according to the issue brief.

"One possible solution to the social isolation of older people living with HIV is to host social opportunities for HIV-positive older adults," the report says. It profiles three model programs that offer support group meetings, communal meal programs and social group activities specifically for PWLHA over the age of 50. The brief also includes an extensive list of references, as well as an annotated list of resources for those providing services to older adults living with HIV.

Share this

Swine Flu

Lyn's Comment: It is quite obvious that some one with a comromised immune system will be concerned about an infectious condition that has been in the news as often as 'swine flu':

Share this

Swine Flu: Key Facts


What is H1N1 (swine flu)?
H1N1 is a new strain of the influenza virus, commonly known as swine flu. The virus was first identified in Mexico in April 2009. It has since become a global pandemic. It is expected that there will be more cases of swine flu during the UK's winter flu season and it is also possible that the virus will change over time and become stronger.
It has spread quickly because it is a new type of flu virus that few, if any, people have full resistance to. Unlike seasonal flu, children and young adults are at higher risk than older people (over 65) of getting swine flu, as are those with some underlying conditions.
In most cases the virus has proved relatively mild. However, some people have become more seriously ill and some have died, including some previously healthy people. The most common complications have been bacterial chest infections such as pneumonias.
How is swine flu spread?
H1N1 is very contagious and spreads from one person to another in small droplets of saliva when someone with swine flu coughs or sneezes  – the same way as colds and ordinary flu are spread. The virus can live on a hard surface for 24 hours and on a soft one for about 20 minutes. People can be infected through the droplets left by an infected person on objects such as phones, keyboards and door handles.
The incubation period is usually between two and five days but can be up to seven. People are most infectious soon after they develop symptoms and are not considered infectious anymore once their symptoms have disappeared.
Can I avoid swine flu?
There’s no indication at the moment that you should be doing (or not doing) anything drastic to avoid catching it. Unless you have symptoms of swine flu, you can carry on with your daily life. Cleaning your hands – either by washing them with soap and warm water or by using alcohol-based gels – after touching hard surfaces that are handled by other people may help you avoid infection.
Using face masks to prevent infection isn’t recommended for the general population.
Swine flu and HIV
There’s little specific information on swine flu and HIV so far. HIV-positive people do not seem to be at higher risk of getting swine flu. However, they are more at risk of having complications if they do get swine flu, particularly if they have a low CD4 cell count (under 200). Having a condition such as asthma or TB as well can increase the risk further, especially as complications are most often chest infections such as bronchitis or pneumonia.
Can I prepare for swine flu?
If you do have a low CD4 count or have an AIDS-defining illness, it would be a good idea to check with your HIV clinic whether you could be taking any action to reduce risk.
If you are on HIV treatment, you should ensure you have enough supplies of your anti-HIV drugs (see Visiting your HIV clinic below).
Preparations suggested for everyone include:
  • having a thermometer and supplies of paracetamol or other cold and flu remedies
  • finding a ‘flu friend’ – someone who can collect antiviral drugs or other supplies for you if necessary so you don’t have to leave home
  • knowing your NHS number in case you need to get treatment – not essential but helpful.
What are the symptoms of swine flu?
The symptoms of swine flu are similar to the symptoms of regular seasonal flu. People usually have a fever or high temperature (over 38°C or 100.4°F) and two or more of the following symptoms: unusual tiredness; headache; runny nose; sore throat; shortness of breath or cough; loss of appetite; aching muscles; diarrhoea or vomiting.
There is information on what you should do if you think you have swine flu in the factsheet Swine flu: dealing with infection.
Should I take antiviral medication to protect me against swine flu?
Swine flu can be treated with the antiviral medicines oseltamavir (Tamiflu) and zanamivir (Relenza). At the moment, people with HIV are entitled to receive Tamiflu as a preventive measure. You may want to take it if you have been in close and prolonged contact with someone who has swine flu (for example, someone you live with), but you need to do this very soon after exposure. Visit the National Pandemic Flu Service website for advice and to get your prescription, or contact the service on 0800 151 31000800 151 3100 FREE.
The H1N1 vaccine
A vaccine has been developed against the H1N1 virus. It is given in two injections, at least three weeks apart.
The UK swine flu vaccination programme will start on 21st October. First priority are people aged between six months and 65 years in the seasonal flu ‘at-risk’ groups. This includes people with HIV. The vaccine is voluntary but people in at-risk groups are advised to have it. Priority group patients in hospital will receive the vaccine first, and the vaccine will be available from GPs from the week starting October 26th.
The vaccine will only be available at GP surgeries. You will need to be registered with a GP, and to have told them of your HIV status.
It is not yet possible to know exactly how well the vaccine will work in people with HIV (or whether it will cause any problems or interact with anti-HIV drugs). It is the same sort of vaccine as a seasonal flu one (so doesn’t have ‘live’ virus in it). Medical advice is that the benefits of having it outweigh any potential risks.
Your GP should take into account other drugs you are taking that may interact with the flu vaccine. You can check for any reported interactions between the flu vaccine and anti-HIV drugs at http://www.hiv-druginteractions.org.
Visiting your HIV clinic
It’s possible that, if the numbers of people with swine flu go up dramatically over the winter, services at HIV clinics may be disrupted – or that you will be advised not to come in because of the risk of becoming infected yourself. Or you may be unwell and be unable to attend an appointment.
If you are on treatment, you should make sure you have enough supplies of your anti-HIV drugs to see you through – at least one month’s supply at any time. You could talk to your clinic about extra supplies at your next appointment.
There is more information on swine flu on the NHS Choices website at http://www.nhs.uk/Conditions/Pandemic-flu/Pages/Introduction.aspx.
We will be reporting on any new information on swine flu and HIV as it becomes available on aidsmap. Sign up to our email bulletins to be kept informed of new developments.
This page was last reviewed on Wednesday, September 30 2009


Share this

UPDATED: H1N1 (Swine Flu) and You. 11/6/09

by Tim Horn
June 11, 2009
The ongoing spread of the H1N1 influenza virus has many people living with HIV concerned about their health and safety. POZ and AIDSmeds continue to keep a close eye on the news and, more importantly, advice from health officials at the CDC and WHO. In short: There’s still no reason to panic. This update, posted June 11, is our sixth revision since the original web exclusive was published April 27.
What is influenza A (H1N1)?
Initially dubbed swine flu, it’s now technically called influenza A (H1N1), a viral infection generally associated with mild disease that has been documented in enough countries to be considered a global pandemic by the World Health Organization (WHO). 

While the virus is believed to have originated in pigs, hence the term "swine flu," health officials have been unable to confirm the source of the virus. While true swine flu can cause illness in people, notably pig farmers and handlers, rarely does it spread from one person to another.

Swine are unique in that they can be infected with strains of influenza known to cause disease in pigs, birds and humans. The genetic material from the various strains can then mix, a process known as reassortment. In fact, the influenza A (H1N1) strain currently circulating the globe contains genes from two strains of porcine virus, one strain of avian influenza and one strain of human flu.  
Is influenza A (H1N1) deadly? 
All types of influenza that cause disease in humans can be deadly—about 200,000 people are hospitalized and 36,000 people die from flu-related complications every year in the United States.
Death rates from influenza A (H1N1) remain low. According to a June 10 update from the WHO, “74 countries have officially reported 27,737 cases of influenza A (H1N1) infection, including 141 deaths.” In other words, the mortality rate of this particular infection is less than 0.1 percent. “Worldwide, the number of deaths is small,” said Margaret Chan, MD, the WHO director-general during a June 11 press conference. “Each and every one of these deaths is tragic, and we have to brace ourselves to see more. However, we do not expect to see a sudden and dramatic jump in the number of severe or fatal infections.”  And on present evidence, she added, “the overwhelming majority of patients experience mild symptoms and make a rapid and full recovery, often in the absence of any form of medical treatment.” 

Many are comparing influenza A (H1N1) with the Spanish flu pandemic of 1918. Are they similar?

The current influenza infection and the Spanish flu definitely share some common traits. Both involve H1N1 virus (with different genetic characteristics) and both were first documented at the end of the regular flu season, in spring. Initial reports also suggest that influenza A (H1N1), like the 1918 influenza outbreak preferentially infects younger people—in nearly all areas with large sustained influenza A (H1N1) outbreaks, the majority of cases have occurred in people under the age of 25 and most cases of severe and fatal infections have been in adults between the ages of 30 and 50 years. Conversely, seasonal flu is most serious and fatal among the frail elderly.

It is important to note that initial studies conducted by the CDC and the National Institutes of Health (NIH) suggest we are currently dealing with an H1N1 strain that’s not nearly as lethal as the virus responsible for millions of Spanish flu-related deaths. According to Peter Palese, a microbiologist and influenza expert at Mount Sinai School of Medicine in New York City who spoke to the Los Angeles Times at the end of April, “There are certain characteristics, molecular signatures, which this virus lacks.” In particular, he explained, influenza A (H1N1) lacks an amino acid that appears to increase the number of virus particles in the lungs and make the disease more deadly.

Some experts caution that H1N1 can mutate as it continues to spread—or possibly reassort yet again—and become more virulent, setting the stage for a more lethal "second wave" of the epidemic, much like occurred in the fall of 1918. Thus far, however, there is no evidence to suggest such genetic changes in the virus are occurring. Compounded by the fact that the United States and many other countries have developed effective pandemic control strategies, secured access to therapies active against influenza A (H1N1) and bacteria responsible for flu-related complications like pneumonia, not to mention state-of-the-art hospital care, a direct comparison with the grim realities of a pandemic almost 100 years earlier is difficult at best.
Isn’t influenza A (H1N1) now a public health emergency in the United States and elsewhere?
What is of concern to public health experts is the fact that the disease is caused by a new influenza type A virus researchers know very little about, and the fact that nobody appears immune to the infection. Experts are also concerned about current patterns of serious cases and deaths that are occurring primarily among young people, including the previously health and those with pre-existing medical conditions or pregnancy.

On June 11, the WHO officially declared influenza A (H1N1) a “Phase Six” pandemic—its highest alert level—reflecting the fact that there are now ongoing community level outbreaks in multiple parts of the world. One important thing to remember is that "pandemic" simply refers to the geographical spread of a disease-causing microorganism. It does not speak to the actual severity of illness caused by the virus.

Is influenza A (H1N1) a threat to people living with HIV?
People living with HIV—as well as those with other chronic conditions, such as heart disease, asthma and diabetes—are believed to face an increased risk of serious influenza-related symptoms. According to CDC interim guidelines released April 30 and a WHO statement released May 1, influenza carries potential risks for those infected with HIV. "It is known that adults and adolescents with HIV infection, especially persons with low CD4 cell counts, are at higher risk for viral and bacterial lower respiratory tract infections and for recurrent pneumonias," the CDC guidelines read. "Because adults and adolescents infected with HIV experience more severe complications of seasonal influenza, it is reasonable to assume that they are also at higher risk for influenza A (H1N1) complications.”

It is not yet clear if, in fact, people living with HIV are more likely to become sick—or severely ill—if exposed to influenza A (H1N1). There have not yet been any data involving HIV-positive individuals, including those with suppressed immune systems or those responding well to antiretroviral therapy, to draw any specific conclusions.  

Can influenza A (H1N1) and HIV mix to form a "super virus"?
At least two mainstream media reports have gotten it seriously wrong—first a Reuters report published May 2, followed by an even more alarming UPI report published May 4.  The Reuters article claims, "HIV and the new flu strain could also mix together in a dangerous way, as has occurred with HIV and tuberculosis, the WHO said in guidance for health workers on its website." The UPI article states, ""Health authorities are particularly worried that the capability to mutate already exhibited by the virus could eventually let it combine with the human immunodeficiency virus, which causes AIDS."
Both reports misrepresent text in the May 1 WHO document referenced above. "Although there are inadequate data to predict the impact of a possible human influenza pandemic on HIV-affected populations, interactions between HIV/AIDS and A(H1N1) influenza could be significant," WHO writes. "Country preparedness plans for influenza should address the needs of HIV-infected persons, and country HIV/AIDS plans, especially in high HIV prevalence countries, should consider public health action required in case of pandemic influenza."
Nowhere does the WHO statement, or any other published recommendation from a health agency or statement by an infectious disease expert, suggest influenza A (H1N1) can mutate and combine with HIV itself to form a super immune-suppressive form of an influenza virus. While WHO and the CDC reckon that influenza A (H1N1) can mutate or reassort with other influenza variants into a more deadly, drug-resistant influenza virus—much like HIV can mutate and reassort with other HIV strains in people—they are very different viruses.
In short, while people living with HIV may be at greater risk for influenza-related complications if infected with influenza A (H1N1), there is absolutely no reason to believe that both viruses can combine to, as UPI suggests, "devastate the human race." 

How can I protect myself? 

The CDC and other public health experts list fairly simple ways to prevent the spread of influenza A (H1N1). These include:

Cover your nose and mouth with a tissue when you cough or sneeze. Throw the tissue in the trash after you use it. 

Wash your hands often with soap and water, especially after you cough or sneeze. Alcohol-based hand cleaners are also effective. 

Avoid touching your eyes, nose or mouth. Germs spread this way. 

Stay home if you get sick. The CDC recommends that you stay home from work or school and limit contact with others to keep from infecting them. 

Very little is known about the benefits of wearing face masks to help control the spread of flu. Whenever possible, instead of relying on face masks, try avoiding close contact and crowded conditions—particularly if 2009 H1N1 reaches pandemic status. 

No evidence shows influenza A (H1N1) can be transmitted through food. Eating properly handled pork—cooked to an internal temperature of 160 degrees—is safe. 

Develop a household emergency plan as a precaution. This should include storing a supply of food, medicines, face masks, alcohol-based hand rubs and other essential supplies.

Reports from the CDC and WHO indicate researchers are now working on a vaccine against influenza A (H1N1). Though it will likely take at least another two to four months to develop and mass produce a vaccine against influenza A (H1N1), it could be available in time for a possible second wave of influenza A (H1N1)-related flu this coming winter in the northern hemisphere.  

What about medications against influenza A (H1N1)?
Good news. Influenza A (H1N1) remains sensitive to two widely available antiviral medications: Relenza (zanamivir), an inhalable powder, and Tamiflu (oseltamivir), a pill taken orally. The flu medications Symmetrel (amantadine) and Flumadine (rimantadine) are not effective against this particular strain of influenza.
There is little evidence to suggest that Relenza or Tamiflu cannot be safely combined with antiretrovirals (ARVs) used to treat HIV.
These medications work much like ARVs—they prevent the influenza virus from reproducing in the body. If someone becomes ill with influenza, including type A (H1N1), Relenza or Tamiflu can minimize symptoms and speed up recovery. They may also prevent serious flu complications. For treatment, these medications work best if started soon after getting sick—within two days of symptoms—so call your doctor immediately if you experience flu-related signs.
According to WHO and the CDC, people at high risk of serious influenza-related complications—including people living with HIV/AIDS—can take Relenza or Tamiflu as post-exposure prophylaxis (PEP) to prevent the flu. However, PEP is only recommended for HIV-positive people who have a known exposure to the virus—if a household member is diagnosed with influenza A (H1N1) being the main example used by both health agencies.
As tempting as it might be to stockpile Tamiflu or Relenza, city, state and federal agencies are discouraging this practice—they're asking health care providers to hold off on prescribing either drug to people without symptoms of the flu or known exposure to the virus—to ensure access for those who do become ill, as well as to prevent misuse and the promotion of drug-resistant strains of the virus.
POZ and AIDSmeds will continue to report on influenza A (H1N1) as it relates to people living with HIV—stay tuned for more information as it becomes available.
Share this

6 Questions People Ask Us Most When They Find Out They Have HIV. 25/4/2016

Published by 

The things those who are newly diagnosed ask us about being poz just might surprise you.

Is it Possible I Got a False Positive?

When your initial test comes back positive you should be offered a confirmatory test, a second test to make sure you’re HIV-positive. The likelihood of two false positives is extremely rare. If you took the at-home test, it’s a good idea to go to a doctor or clinic for the second test. False negative test results can happen too, so if you come up positive and your partner comes up negative, be cautious. According to AIDS.gov, “It takes time for seroconversion to occur. This is when your body begins to produce the antibodies an HIV test is looking for — anywhere from two weeks to six months after infection. So if you have an HIV test with a negative result within three months of your last possible exposure to HIV, the CDC recommends that you be retested three months after that first screening test. A negative result is only accurate if you haven’t had any risks for HIV infection in the last six months.”

How Many Former Sex Partners Do I Have to Tell?

This is kind of a murky area, with debate between activists and public policy experts. You will be asked to notify, or have the health department notify, anyone you have had sex with or shared needles with since your last negative HIV test or, if this was your first one, your recent sex partners (say, in the last year). Your partner(s) will need to be tested now and, if their test is negative, again in three months. According to the New York Department of Health, how far back in time known partners should be reported is determined on a case-by-case basis depending on such factors as the approximate dates when you believe you were exposed and how willing (or able) you are to dig up those names and contact info. The federal Ryan White HIV/AIDS Program requires states to make a good-faith effort to notify current spouses and anyone who has been the HIV-positive person’s spouse within the last 10 years. However, public health departments and clinics aren't supposed to pressure you for this information and they cannot withhold your test results or penalize you in any way for not divulging.

What Will Change Now That I'm Poz?

With proper treatment, being HIV-positive is a manageable, chronic condition like lupus, diabetes, or asthma. You might need to exercise caution with some of your regular activities. Unless you had other health conditions prior to diagnosis, you’ll likely see a physician more than you did before because it’s vital that you monitor your health closely. Regular visits with your HIV health care provider will keep you up to date. Speak with your doctor about changes that need to be made to your diet, exercise regimen, and use of alcohol, prescription medicines, and recreational drugs. If drugs were a factor in your transmission (there’s a link between crystal meth use and HIV transmission, for example), your doctor may recommend rehab. You may tire more easily, be more prone to infections, or have medical side effects you didn’t have before. But hands down, the biggest change in your daily routine will be taking medication. HIV medication requires strict adherence to the prescribed daily dosage, and the drugs often have (mostly minor) side effects. Open communication with your doctor will ensure that you are fully equipped to handle the changes in your life.

Can I transmit HIV through Oral Sex?

Because you can’t transmit HIV through saliva, you cannot pass HIV to your partner if you perform oral sex on them. Period. 

With blow jobs, it is technically possible, but extremely rare, to transmit HIV to your partner if you ejaculate into their mouth. Years ago, a study by Eric Vittinghoff, a professor at University of California San Francisco’s Center School of Medicine’s Department of Epidemiology and Biostatistics, looked at oral transmission among men who had sex with men. He determined the rate of HIV transmission via oral sex was about four one-hundredths of one percent (0.0004). In fact, by the early 2000s — decades after the start of the AIDS epidemic, with more than 36 million people infected by the virus world wide — fewer than 40 cases of possible oral transmission had been reported in medical literature. “HIV acquisition by receptive oral sex without ejaculation is so unlikely, that we don’t have any firm evidence even to show that it actually occurs,” said Dr. Laurence Peiperl, former director of UCSF Center for HIV Information, at a roundtable on the subject. So it’s a biological possibility but it’s exceedingly rare and here’s why: As an HIV-positive man, even if you ejaculate into someone else’s mouth, they need to have open wounds in the mucous membranes in their mouth in order for the virus to penetrate them. Swallowing semen or pre-cum is not a risk because stomach acid and other enzymes kill HIV. 

And if you are a woman with HIV, having someone perform cunnilingus on you is also extremely low risk, especially if you’re not menstruating and your partner doesn't have open sores in her or his mouth (even then the risk is low). Although the risk of HIV transmission is exceedingly low, you can still get other sexually transmitted diseases, including gonorrhea, via oral sex.

Are There symptoms I Should Watch Out For Now?

There are certain signs and symptoms to look out for and a few health factors that should be constantly monitored. According to Rose Farnan, RN, and Maithe Enriquez, RN, authors of What Nurses Know About HIV/AIDS, you should pay special attention to particular symptoms: diarrhea, weight loss or loss of appetite, trouble or pain when swallowing, white patches or sores in or around your mouth, long-lasting fever, new cough, shortness of breath, headaches, dizziness, blurred vision, or difficulty remembering things. It can be hard to distinguish whether these symptoms are just passing or sign of a more serious issue, but keeping track of your body’s patterns will greatly benefit your health. Farnan and Enriquez suggest keeping written records of weight and other factors that can change over time.

Do I Need to Stop Having Sex?

No! In fact, we encourage you not to. Orgasms help you sleep, boost your immunoglobulin levels (which fight infections), and reduce stress and depression. There are ways to protect yourself and your partner, including condom use, PrEP (for an HIV-negative partner), serosorting, and Treatment as Prevention 

Share this

Teen Talk: A Guide for Positive Living. 2013

The sub-Saharan Africa edition of Teen Talk, a question and answer guide for HIV-positive adolescents, was adapted from the Botswana version, published in 2010 by the Botswana-Baylor Children's Clinical Centre of Excellence Teen Club Program, and the original version, which was published in the United States in 2004.

Teen Talk covers a variety of topics, including ARVs, adherence, friendship, nutrition, exercise, reproductive health, positive prevention, multiple concurrent partnerships, safe male circumcision, prevention of mother-to-child transmission, emotions, and disclosure.

Download Teen Talk, Full (text only) (PDF, 1.22 MB)

Due to the large file size of the full image version of Teen Talk, AIDSTAR-One has divided the booklet into smaller sections to enable shorter downloading times. These can be downloaded from http://www.aidstar-one.com/focus_areas/treatment/resources/pediatric_dis...

Share this

Treatment and Adherence


Share this

HIV Treatment Primer.


Diving into the world of HIV treatment for the first time can be intimidating: dozens of meds, lab tests, medical terms and differing opinions that may make you feel like you need to go to medical school in order to make the right decisions. You don’t.

Whether you’ve just been diagnosed with HIV, have known for a while, or are helping a friend with HIV, the good news is that you can learn enough to make informed decisions without becoming an infectious disease specialist. The trick is to take it step by step, learning enough along the way to put it all together with the help of an experienced health care provider.

Download (20p; 968.86KB)

Share this

Pain - A Neglected Complication of HIV. Living with AIDS # 505. 1/3/12

Recent research among South Africans living with HIV shows that they often experience varying degrees of pain


By Khopotso Bodibe
1 March 2012

Recent research among South Africans living with HIV shows that they often experience varying degrees of pain, yet many patients do not report it. The study also shows that health care workers are ill-equipped to treat pain in HIV-positive people.

An article published in the European Journal of Pain, reports that pain is very common among people living with HIV. The article was published following research among more than 500 South African out-patients attending public sector clinics in rural Limpopo and in metropolitan Johannesburg. In the research, the study ranked the pain according to how intense it is – from being mild to being severe.

“Sixty percent of the rural cohort and 59% of the metropolitan cohort reported moderate to severe pain at the time of the interview. So, it’s a significant burden that these patients are carrying around. If you took an 11-point scale, starting at 0 with no pain at all, and 10 being the worst pain you’ve ever experienced in your entire life. Anything from a rating of 4 out of 10 to 10 out of 10 is moderate to severe. So, moderate would be 4 – 7 on an 11-point scale and severe from 8 – 10. So, it’s quite an interfering pain. It’s quite severe pain”, says leader of the study, a Wits University professor in the Faculty of Health Sciences, Peter Kamerman.

Professor Kamerman says various factors cause people who have HIV to experience pain.

“The virus itself and the immune response to the virus can lead to inflammatory responses which increase pain. But, also, in addition to the virus itself causing pain, if you’ve got an infection which decreases your immune system you’re increasing your chances of secondary complications – cancers, secondary infections – all of which, themselves, might be associated with pain. In addition, a problem with HIV is that many of the older drugs for the treatment of HIV are, themselves, neuro-toxic. They can cause nerve damage, which, then, also can lead to pain. The result is that pain is very common in people with HIV, and that’s across all stages of the disease”, he says.

Susceptibility to pain is present even when patients are on anti-retroviral therapy and have higher CD 4 counts. Professor Kamerman adds that the most important finding in the study is that patients don’t receive appropriate treatment for their pain.    

“The pain isn’t being well-managed. The treatment is extremely low. Lots of patients who have got pain are not being treated for that pain and when they are being treated, they are typically being under-treated”, he says.

He adds that: “It’s a two-factor thing. The easy thing to jump to is that the doctors aren’t treating them properly. But it’s not that. The case is probably a combination of patients not reporting the pain… Even if it was moderate to severe pain, they weren’t prioritising the pain as being important to them and, therefore, it wasn’t interfering with their daily function”.

 “So, if you’ve got somebody who isn’t prioritising the pain… they’ve got other things that are a priority, maybe, getting food on the table (looking at the socio-economic group that we were dealing with) … your likelihood of reporting that pain to your doctor is probably low. Even if you’re in pain and you want to report it, do you feel comfortable reporting that with your doctor? Your doctor’s of a different race group, a different language group, a different sex than you… do you feel comfortable reporting that with your doctor? So, there’s a barrier from the patient’s side”.

Professor Kamerman says doctors seldom enquire if their patients do experience pain. He says they also fail to treat it appropriately.  

“The other thing is from the doctor’s side of point of view, is the doctor asking: Do you have pain? Then, if the doctor is even asking about whether or not they have pain, do the doctors have the appropriate training to assess and treat that pain? In most cases, in medical schools there is under-teaching of pain assessment and pain management. You might have a doctor who cares a lot about whether or not the patient is in pain, but when it comes down to the fine management of pain, which can be extremely complicated, especially in diseases like HIV where patients can have multiple different types of pain in only one person, they don’t know how to actually manage that pain properly. So, the result is an under-treatment of the pain”.

The research conducted in Limpopo and Johannesburg clearly illustrates the doctors’ inadequacies regarding managing pain in their patients, says Kamerman.

“Of the patients who were being treated for pain, 92% of them were receiving your simple anti-inflammatory drugs and paracetamol. Only 5% were receiving a combination of paracetamol and a weak opioid, such as codeine and paracetamol. And, then, even fewer patients were receiving what they call adjuvants in pain medicine, which is drugs which are not typical pain management drugs, but drugs used to treat specific pain problems such as when there is nerve damage and the pain resulting from nerve damage. And only about 1% - 3% of patients were receiving those adjuvants for pain management. So, by far and away when patients were receiving pain management, they were receiving the very weak drugs”, he says.    

The most common parts of the body where the pain was felt were the head, the abdomen and feet in the metropolitan group, while the rural group experienced pain in the head, abdomen and genital area.

Share this

HIV, mental health & emotional wellbeing. 13/3/2015

Published at AIDSmap
Written by Roger Pebody and Michael Carter
December 2014

You can find the complete booklet here

This booklet provides information on emotional wellbeing and mental health for people living with HIV. Emotional difficulties and problems with mental health can affect anybody (research suggests one in every four people in the UK will experience some sort of mental health problem at some point), but living with a long-term illness like HIV can mean that you are more likely to experience mental health problems. There are things you can do to look after your emotional health, and a lot of help available if you do experience problems. Treatment for depression, anxiety and many other mental health problems can be very effective.


  • Emotional wellbeing, mental health and HIV

    Emotional wellbeing and mental health are important for everyone....

  • Emotional wellbeing

    Particular events such as receiving an HIV diagnosis, disclosing that diagnosis, bereavement, the breakdown of a relationship, financial worries or work problems, or dealing with starting HIV treatment...

  • Mental health

    Mental health problems can affect anybody, but it seems that people living with HIV may be more likely than the general population to experience them. The groups most...

  • Professional support

    Everybody will have personal strategies for dealing with their emotional and mental health needs. However, just as people develop physical illness and need to see a health...

  • Mental health problems

    Life involves emotional stresses and strains. Being diagnosed with HIV, and living with it, will at times cause such stresses, and some aspects of your life will become...

  • Treatments for mental health problems

    People living with HIV may also experience other mental health problems, unrelated to their HIV diagnosis, such as attention deficit hyperactivity disorder (ADHD), schizophrenia, obsessive-compulsive disorder (OCD), personality...

  • HIV treatment side-effects and mental health

    Some anti-HIV drugs can affect your emotional and mental health. Most notably, the non-nucleoside reverse transcriptase inhibitor (NNRTI) efavirenz (Sustiva, also in the combination pill, Atripla) has...

  • Looking after your emotional and mental health

    There is a lot you can do to look after your own emotional wellbeing and mental health. Take care of yourself: Make sure you get enough to...

  • Supporting somebody with emotional or mental health problems

    As a family member, partner or friend, you can be a very valuable source of support for people experiencing mental health problems. But to provide this...

  • Where to go for emotional and mental health advice and support

    A good place to start would be your HIV clinic. Your HIV doctor should take your mental health as seriously as your physical health. Many of the...

  • Summary

    Emotional and mental health are important issues for people with HIV. People with HIV seem to be more likely to experience a range of emotional and mental...


Share this

Your next steps.

Your next steps is a booklet for people who’ve just found out they have HIV.

This booklet is for you if you’ve just learnt that you have HIV. It might also be helpful if you’ve known for a while, but have not wanted to find out more about HIV until now.

The booklet tries to answer the most common questions that people have at this time. There’s straightforward information about what HIV is and how you can look after your health. We talk about having sex when you have HIV as well as deciding whether or not to tell other people.

Finding out that you have HIV can be upsetting. This booklet may help by giving clear, factual information, and reassuring you that life does go on.

We would like to thank everyone involved in producing Your next steps, particularly the people living with HIV who reviewed draft copies and helped shape the final booklet. Special thanks to the following for their assistance: Michael Carchrie Campbell; Dr Ian Cormack, Croydon University Hospital; Lizzie Jordan; Dr Nicola Mackie, St Mary's Hospital; Hannah McCall, Mortimer Market Centre; Claire McQuoid; Becky Mitchell; Martin Murchie, Society of Sexual Health Advisers; Richard; Alex Sparrowhawk; Dr Shema Tariq, Royal London Hospital.

Your next steps

Published July 2014

Last reviewed July 2014

Next review July 2017


Contact NAM to find out more about the scientific research and information used to produce this booklet.

Share this

"The Bravest Boy I Know" Resources


The Bravest Boy I Know

The Braves BoyThis book features two delightful eight-year olds living in Africa: a girl called Kayla and a boy called Kendi. Kendi is living with HIV, but seems as happy as any other child. The story focuses on their carefree life at school, at home and in the countryside. The book also discusses Kendi’s feelings about being unwell sometimes, and about his mum’s support when he takes medicine. Kendi is full of dreams and imagination, and has worked out how to deal with the challenges that come with living with HIV. And Kayla adores him, describing him as the “Bravest boy I know”.

Download PDF
Email this link to me

Return to full list


Discussion guide for The Bravest Boy I Know

DiscussionThe book The Bravest Boy I Know can be used to help people understand HIV among children and especially to understand that children bounce back and do well when on treatment. HIV-positive children can go to school, play and live like any other children. They, and their families, need care and support, not stigma and discrimination. For parents, caregivers, teachers and health-care providers: if a child has acquired HIV, you can take comfort in knowing that there is hope. Treatment is now available and it means that children can survive and thrive. There are many adults alive today who became infected with HIV at birth and have grown into adulthood. People living with HIV can enjoy a better quality of life because of new HIV medicines, better care and more support.

Download PDF
Email this link to me

Return to full list

 Children and HIV: Fact sheet

Fact SheetEvery day 700 children acquire HIV; however, in 2011 only one third of children exposed to HIV were tested for the virus within the recommended two months. This is largely because it requires complex laboratory technology that is often only available at central laboratories. Also, results can take a long time to come back, which means that families do not always return for the results and never learn of a child’s HIV status. Without knowing the HIV status of a child it is impossible to access life-saving treatment. Without treatment, half of all children born with HIV will die by the age of two and the majority will die by the age of five.

Download PDF
Email this link to me

Return to full list



Share this

Adolescents Living with HIV (ALHIV). 2012

Knowledge 4 Health 2012

This is an e-Toolkit on Adolescents Living with HIV (ALHIV)! This toolkit has been developed by USAID, AED and collaborating organizations.  The resources in this toolkit cover a broad range of topics pertinent to the treatment, care and support of ALHIV including:


Share this

Effect of Antiretroviral Therapy on Patients’ Economic Well-being: Five-year Follow-up - 13 Feb 2014

Article originally published in AIDS The Official Journal of the International AIDS Society

Authors: Rosen, Sydneya,b; Larson, Brucea; Rohr, Juliaa; Sanne, Ianb; Mongwenyana, Constanceb; Brennan, Alana T.a; Galárraga, Omarc,a

Author Information

aCenter for Global Health & Development, Boston University, Boston, Massachusetts, USA

bHealth Economics and Epidemiology Research Office, Department of Internal Medicine, School of Clinical Medicine, Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, South Africa

cBrown University, School of Public Health, Providence, Rhode Island, USA.

Correspondence to Sydney Rosen, Center for Global Health & Development, 801 Massachusetts Ave Room 390, Boston, MA 02118, USA. Tel: +1 617 414 1273; e-mail: sbrosen@bu.edu

 Supplemental digital content is available for this article. Direct URL citations appear in the printed text and are provided in the HTML and PDF versions of this article on the journal's Website ( http://www.AIDSonline.com).

Received May 30, 2013

Accepted August 30, 2013



Evaluate the effect of antiretroviral therapy (ART) on South African HIV patients’ economic well being, as indicated by symptoms, normal activities, employment, and external support, during the first 5 years on treatment.


Prospective cohort study of 879 adult patients at public or nongovernmental clinics enrolled before ART initiation or on ART less than 6 months and followed for 5.5 years or less. Patients were interviewed during routine clinic visits. Outcomes were estimated using population-averaged logistic regression and reported as proportions of the cohort experiencing outcomes by duration on ART.


For patients remaining in care, outcomes improved continuously and substantially, with all differences between baseline and 5 years statistically significant (P < 0.05) and continued significant improvement between year 3 and year 5. The probability of reporting pain last week fell from 69% during the three months before starting ART to 17% after 5 years on ART and fatigue from 62 to 7%. The probability of not being able to perform normal activities in the previous week fell from 47 to 5% and of being employed increased from 32 to 44%; difficulty with job performance among those employed fell from 56 to 6%. As health improved, the probability of relying on a caretaker declined from 81 to less than 1%, and receipt of a disability grant, which initially increased, fell slightly over time on ART.


Results from one of the longest prospective cohorts tracking economic outcomes of HIV treatment in Africa suggest continuous improvement during the first 5 years on treatment, confirming the sustained economic benefits of providing large-scale treatment.


With the rapid expansion of antiretroviral therapy (ART) programs in lower-income and middle-income countries in the middle of the last decade, large numbers of patients are now reaching 5 or more years on ART. The biomedical outcomes of ART over the first 5 years on treatment have been well documented in many sub-Saharan African countries [1,2]

, where antiretroviral provision has been associated with reductions in HIV-associated mortality at a population scale [3–5]


There is a far less robust evidence base regarding the ‘nonbiomedical’ outcomes of treatment in Africa. A handful of studies have considered the implications of ART for a limited set of quality of life, employment, and other economic and social indicators, but these studies, which have been reviewed twice in recent years [6,7]

, have largely been limited to the 1–2 years after initiation of treatment. They have generally reported substantial improvements in the indicators they measured in the first 6–24 months after treatment initiation. In view of the lifelong commitment that ART requires, however, it is important to know whether these improvements persist, increase, or deteriorate in the ensuing years on treatment.

We report the effect of ART over the 5 years after treatment initiation on South African adults’ economic well being, using a set of indicators pertaining to symptom prevalence, ability to perform normal activities, employment and job performance, and reliance on external support. Each of these outcomes reflects the ability of ART patients to contribute to their own, their households’, or society's economic activity. Our results expand upon and extend a previous, 3-year analysis [8] of one of the longest-running prospective cohorts in Africa for nonbiomedical outcomes of treatment. New results reported here include both a longer duration of follow-up (the fourth and fifth years after treatment initiation) and additional outcomes related to employment and reliance on external support. The present evaluation aims to characterize the long-term effect of ART on quality of life and economic activity.


Study sites and data collection

A detailed description of the study sites, sample selection, and data collection has been published elsewhere [8]. Patients were enrolled in the study from three ART clinics in South Africa: the Themba Lethu Clinic at Helen Joseph Hospital in Gauteng Province, a large, urban, public referral hospital, and two nongovernmental clinics, the Witkoppen Health and Welfare Center, a full service primary care clinic serving informal settlements in Gauteng Province, and ACTS Clinic, an HIV/AIDS clinic in rural Mpumalanga Province. All study sites followed national guidelines for HIV/AIDS care and treatment.

Between June 2005 and June 2006, patients were identified from each site at random from patients present at the clinic each day. HIV-positive adult patients who were not on ART or had initiated ART less than 6 months prior to recruitment were eligible for enrollment. Patients who provided written consent were enrolled and administered a baseline questionnaire. Follow-up interviews were administered as often as possible, when participants returned for routine clinic visits for medical consultation or to pick up medication. Interviews at all sites ended by June 2011. Patients’ medical records provided information about the date of ART initiation, clinic attendance, and CD4+ cell counts.

The questionnaire designed for this study focused on self-reported health condition and engagement in economic activities. Outcomes reported here include two specific symptom indicators, four outcomes relating to employment and normal activities, and two outcomes related to reliance on external assistance in daily life. The symptoms were any bodily pain or headache and feeling tired or fatigued last week. We asked if participants were able to perform their normal primary activity during the last 5-day work week, and, if not able to perform that activity, for how many days in the previous week they were unable to do so. Patients were also asked about their employment status and, if employed, performance at work. The first measure of external assistance was receipt of the South African Government's disability grant. Disability grants are typically approved for HIV patients who are judged too sick to work and/or have a CD4+ cell count below the threshold for starting ART. Successful ART should thus reduce the proportion of HIV patients who are eligible for grants. Finally, patients were asked whether they relied on someone else to take care of them, an indicator of the multiplier effect of illness on patients’ families.

The study was approved by the ethics committees of Boston University and the University of the Witwatersrand. Written informed consent was provided by all study patients.

Statistical analysis

Interviews conducted between 3 months prior to ART initiation and 63 months after ART initiation were included in the analysis. Time on ART at each interview was calculated from the date of ART initiation provided by the patients’ medical records. Time on ART extended from 90 days (3 months) pre-initiation to 1980 days (5.5 years) post-ART initiation. Time intervals were categorized as 90 days pre-ART, 0–30 days on ART, 31–90 days on ART, and 90-day intervals during the rest of the first year on ART, followed by 180-day intervals through 5.5 years. The shorter time periods around ART initiation are intended to detect any rapid changes immediately after initiation.

All outcome variables other than the number of days unable to perform normal activities in the previous week were dichotomous and modeled with a logistic regression; number of days unable to perform usual activities was modeled with a linear regression. Regression models included dummy variables for time category on ART, sex, age group (18–29 years, 30–39 years, 40–49 years and 50 years old or more), CD4+ cell count category at ART initiation, and CD4+ cell count category closest to interview date. For the employment status and disability grant outcomes, a 6-month lagged estimate of CD4+ cell count was used rather than the CD4+ cell count closest to interview. CD4+ cell counts were categorized as 0–49 cells/μl, 50–99 cells/μl, 100–199 cells/μl, and 200 cells/μl or greater. All regression analyses were implemented using generalized estimating equation methods [in SAS version 9.3 (SAS Institute, Cary, North Carolina, USA) and STATA version 11.2 (STATA Corp., College Station, Texas, USA)], with population-averaged models with robust standard errors accounting for the individual correlation across multiple observations over time. Odds ratios and associated probabilities for the logistic regression models are reported, with the probabilities and confidence intervals estimated using the margins command in STATA. For all outcomes, the reference case reported is for a female age 30–39 years, at 0–30 days on ART, with a CD4+ cell count category of 100–199 cells/μl. To highlight long-term changes during the fourth and fifth years on treatment, a secondary analysis estimates the change in the probability of experiencing each outcome between month 36 and month 63, with months 33–36 as the reference case.

Because many patients in our cohort stopped receiving treatment at the study clinics over our 5-year period of observation, we assessed the extent to which clinic attrition affected the generalizability of our findings. Clinic attrition included death, transferring to another treatment facility, and site loss to follow-up (>3 months late for last scheduled appointment). We distinguish clinic attrition from study loss to follow-up, defined as making a visit to the clinic at least 6 months after the last completed interview. Average CD4+ cell counts and clinic attrition from the study cohort and from the full population of patients initiating ART at Themba Lethu Clinic, our largest study site, were compared to determine if attrition led to differences between the study sample and the overall population of ART patients.


Cohort characteristics and attrition

A total of 1065 patients were enrolled in the study in 2005–2006. Of these, 174 patients had no record of beginning ART before June 2011 and 12 patients only had interviews more than 90 days prior to ART initiation. The remaining 879 patients were included in the cohort for analysis of outcomes. Baseline and 48-month characteristics of these patients are presented in Table 1, with further details available in an earlier publication [8]. Each of the 879 patients included in the analysis was interviewed a mean of 7.6 times over the course of the study, with a median interval between interviews of 185 days.

Table 1
Image Tools

Clinic attrition over the course of the 5 years of study follow-up was 47% of the original cohort of 1065 patients. The study cohort and the overall treated population at our largest study site, Themba Lethu Clinic, experienced a steady and similar increase in CD4+ cell count over time on ART, with overlapping 95% confidence intervals (not shown). Similarly, clinic attrition from our cohort was not greater than overall attrition at Themba Lethu Clinic, where a separate analysis found that average attrition among all patients initiated on treatment between 2004 and 2010 was 47% [9]. Neither the immunological status nor retention in care of our study cohort thus differed from that of all patients remaining in care, either at baseline or after 5 years on treatment.

Due to missing data on CD4+ cell count values, 19% of interviews were excluded from the adjusted models. Model estimates were unchanged when missing CD4+ values were imputed using multiple imputation.

Symptom outcomes

As illustrated in Fig. 1 and detailed in Table S1, http://links.lww.com/QAD/A407, reported pain and fatigue in the previous week decreased continuously over the full 5-year period after ART initiation. Nausea and skin problems showed a similar pattern of decline (not shown).

Fig. 1
Image Tools


All decreases in symptoms at the end of year 5 on ART were statistically significant compared to the first month on ART. Notably, the decline in symptom prevalence between the end of year 3 and the end of year 5 was also significant, confirming that while the sharpest drop in symptoms occurs during the first 2 years, patient condition continues to improve even in the fourth and fifth years, even when controlling for CD4+ cell count. Patients’ reports of experiencing pain in the previous week, for example, decreased from 69% in the months preceding ART initiation to 35% (P < 0.001) after 3 years on ART and then fell further, to 17% (P < 0.001), after 5 years on ART. Sixty-two percent of patients reported experiencing fatigue in the previous week before starting ART; by the end of year 5 on ART, only 7% (P < 0.001) of patients reported it. Men were less likely to report bodily pain or fatigue than women, and older patients were more likely to report bodily pain than younger patients. Lower current CD4+ cell count was associated with increased odds of reporting bodily pain and fatigue, although the effect was not statistically significant for fatigue.

Normal activities and employment

Figure 2 and Supplemental Table S2, http://links.lww.com/QAD/A407 report results for having a job at the time of the interview, difficulty with job performance, ability to perform normal activities during the previous 5-day workweek, and number of days unable to perform normal activities over the previous 5-day workweek, among those who reported inability. The probability of being unable to perform normal activities in the previous week diminished continuously throughout the 5 years of follow-up, from 47% in the 3 months prior to initiation, to 13% (P < 0.001) after 3 years on ART, to just 5% by the end of 5 years. Among those who reported impairment, the number of days unable to perform normal activities in the last 5-day workweek decreased from 3.7 days in the month prior to ART initiation to 1.9 days after 5 years on ART (P = 0.03). Both the ability to perform normal activities and the number of days unable showed statistically significant improvements from year 3 to year 5 on ART.

Fig. 2
Image Tools


The probability of having a job at the time of the interview (current employment) increased most sharply between 6 and 24 months on ART but showed continued steady improvement through year 5. After 5 years on ART, 44% of patients reported being currently employed, a substantial increase from the 32% reporting employment during the first month on ART (P < 0.000). Although the percentage of patients with a job increased between year 3 (41%) and year 5 (44%), the difference was not statistically significant. Patients with a CD4+ cell count at least 200 cells/μl 6 months prior to the interview were significantly more likely to be employed at the time of the interview.

Among patients who were employed at the time of interview, difficulty with job performance decreased significantly with duration on ART. During the 3 months prior to ART initiation, job difficulty was reported among 56% of respondents. Job difficulty dropped precipitously during the first year on ART. By the end of 3 years on ART, difficulty with job performance was reported among 7% of respondents (P < 0.001), falling further to 6% by the end of year 5 (difference not statistically significant).

To explore further the observed increase in employment, we examined employment outcomes among study patients who had at least 4 years of follow-up. As would be expected, much of the improvement in overall employment came from patients who said they were unemployed and looking for work at baseline (n = 248) and had found jobs by the time of their last interview (n = 96, 39% of those looking for work at baseline). There was also substantial improvement, however, among those who said they were unemployed but not looking for work at baseline (n = 96). By their last interview, 30% (n = 29) of these patients had found jobs and 53% (n = 51) were now looking for work. It thus appears that many of those who had not previously been seeking employment joined the active labor force within 5 years of initiating ART.

Reliance on external support

Patients were asked whether they were currently receiving a disability grant from the government and whether they relied on another person to take care of them (Fig. 3 and Table S3, http://links.lww.com/QAD/A407). Prior to treatment initiation, 18% of patients reported receiving a grant. This proportion then increased over the first year on treatment to a high of 29%, before gradually declining again back to a low of roughly 13% after 4–5 years. The increase in grant receipt in the first year may reflect the fact that new ART patients are offered access to social services such as the disability grant when they enroll in the treatment program, while the decrease in later years is likely to reflect improving health over time on treatment.

Fig. 3
Image Tools


A large proportion of patients reported having a caretaker in the 3 months prior to ART initiation (81%) and in the year following the beginning of treatment. After 1.5 years on ART the need for caretakers declined significantly. After 2.5 years on ART less than 1% of patients reported having a caretaker, and as a result the model could not be estimated past 2.5 years on ART. An increased CD4+ cell count at both ART initiation and over time was significantly associated with decreased odds of needing a caretaker. Caretakers were most commonly the patient's spouse or partner (33.4%), mother or father (23.3%), or sister or brother (17.9%).

All model estimates were also estimated using inverse probability weighting to adjust for study loss to follow-up, defined as making a visit to the clinic at least 6 months after the last completed interview. Study loss to follow up was just 3.8% of the original cohort, and the analyses (not shown) indicated that it did not affect results significantly.


In high HIV prevalence countries that are aiming for universal access to ART, a substantial proportion of working-aged adults will ultimately be dependent on lifelong treatment. In South Africa, where adult HIV prevalence is estimated at 16.6% and ART coverage at 52% of those eligible – almost 2 million people – nearly 5% of all adults are already on ART, based on published population and treatment coverage estimates [10,11]

. In view of the effectiveness of ART in prolonging survival, new ART initiation guidelines that expand the treatment-eligible population, and the national goal of treating at least 80% of those eligible, this proportion can be expected to rise steadily over the coming years, as will the share of ART patients who have been on treatment for more than just 1 or 2 years. It is thus of critical importance to patients, their households, their employers, and society as a whole that ART do more than simply delay mortality: it must produce people who feel healthy enough to lead normal lives, support their families, and participate in the economic and social life of their communities.

The data presented here suggest that, for HIV-infected adults who remain on ART, the benefits of treatment for economic engagement are large and sustained and continue to increase steadily over at least the first 5 years on treatment. Equally important, and reflecting the value of long-term follow-up, almost all outcomes assessed continued to improve even in the fourth and fifth year after starting treatment, with significant differences between year 3 and year 5. We found, for example, that pain and headache, which nearly three-quarters of the study cohort reported during the period just before and after starting ART, was experienced by only about 17% after 5 years on treatment, with steady decline from ART initiation all the way to the end of our period of observation at month 66. Similarly, inability to perform normal activities – arguably the most important indicator of the effect of illness on patients’ lives – fell from 47% of the cohort before starting treatment to a nearly negligible 5% by 5 years later. Employment, in turn, climbed from 32 to 44%. The official unemployment rate in South Africa remained roughly stable throughout the study period, varying only slightly from an average of 24% [12]. We thus do not attribute our patients’ reported increase in employment to a secular reduction in unemployment rates during the study period, but rather to changes in the patients’ own circumstances. Patients who had jobs reported substantially less difficulty performing their jobs as their duration on ART lengthened. Reliance on external support also fell steadily after the first year on ART, with fewer patients receiving disability grants or needing caretakers as time progressed.

Our findings are consistent with those reported by the shorter studies cited earlier, which generally found large improvements up to the first 24 months after treatment initiation. Of the four other studies we found that report beyond 2 years, all observed large improvements in their chosen outcomes: activities of daily living in South Africa [13], physical health status in Uganda [14], workplace absenteeism in Botswana [15], and labor force participation and hours worked in Kenya [16]. Differences in survey instruments and reporting formats make it difficult to compare their results to ours directly, but taken together these studies suggest that the improvements we observed are not unique to our study population or the specific outcomes we assessed.

Although our enrolled cohort was a representative sample of patients at our study sites, the results we report are for patients retained in care at the study clinics, attending clinic visits, and presumably remaining adherent to therapy. Achieving the benefits we show is thus conditional on staying in care. A large proportion of our original cohort did not remain in care at the study sites for the full 5-year duration of follow up, and it is likely that for at least some individuals, reasons for attrition and study outcomes were related. This may include patients who responded poorly or were nonadherent to treatment, and thus would probably have reported less improvement than did those remaining in the study. Clinic attrition may also include some subjects who responded well to treatment and stopped attending the clinic because they no longer felt sick, got jobs and could not keep appointments during working hours, or relocated for work; these subjects may have reported better outcomes than did those who remained in the study, at least in the near term. Regardless of the reasons for attrition, it is important to interpret our findings as conditional on staying on ART.

The other main limitations of this study are those that are common to observational research in routine clinical settings everywhere. In particular, because patients visited the study clinics on irregular schedules and did not participate in interviews at every visit – either by patient preference or because they were not found by a study interviewer before the end of the visit – we often had long and irregular gaps between interviews, resulting in an unbalanced data set with different numbers of observations among patients. In addition, our results are based on self-reported data and likely reflect some recall error and/or strategic answering of questions.

Although the limitations mentioned above should be kept in mind in interpreting our results, none seems sufficient to call into doubt the core finding of our study: patients who remain on ART experience large benefits in their ability to engage in economic activities, and these benefits are sustained and increase over at least the first 5 years on treatment. By the end of the fifth year, the proportion of patients reporting negative outcomes such as an inability to perform normal activities is sufficiently low that it is reasonable to conclude that ART patients may be indistinguishable from the general HIV-negative population. Some negative outcomes persist – the probability of experiencing pain last week remained around 17% even after 5 years – and even the patients with the most positive responses continue to be burdened by daily adherence to medications, regular clinic visits, and all of the other practical, emotional, and financial consequences of HIV infection. The results of this study suggest, however, that for most patients, ART offers the possibility of a normal, healthy life over a number of years. Through their effect on productivity and employment, the benefits to individual patients will translate, in turn, into social and economic development gains for societies as a whole.


We thank the participating clinics – the Themba Lethu Clinic of Helen Joseph Hospital and the Gauteng Department of Health, the Witkoppen Health and Welfare Centre, and the ACTS Clinic – and their medical directors and staff for their assistance to the study and support of this research. We are especially grateful to the patients who volunteered their time to be part of our research cohort. Funding for this study was provided by the South Africa Mission of the US Agency for International Development through Cooperative Agreement GHSA-00-00020-00, Country Research Activity (G/PHN/HN/CS) to Boston University, Associate Cooperative Agreement 674-A-00-09-00018-00 to Boston University, Cooperative Agreement 674-A-00-02-00018 to Right to Care, and by the US National Institutes of Health through National Institute of Allergies and Infectious Diseases Grant PEPFAR 13 to the Wits Health Consortium. The opinions expressed herein are those of the authors and do not necessarily reflect the views of the funding agencies or participating patients or clinics. The funders had no role in study design or conduct; data collection, management, and analysis; decision to publish; or preparation, review, or approval of the manuscript.

Authors’ contributions: S.R. and I.S. conceived of the study and designed the protocol. B.L., J.R., and O.G. designed and conducted the analysis. C.M. and A.B. contributed to the analysis. All authors contributed to interpreting the results. J.R. and S.R. drafted the article. All authors edited the article and approved the final article.

Sources of support: United States Agency for International Development, National Institutes of Health

Prior publication: interim data were previously published in: Rosen S, Larson B, Brennan A, Long L, Fox M, Mongwenyana C, Ketlhapile M, Sanne I. Economic outcomes of patients receiving antiretroviral therapy for HIV/AIDS in South Africa are sustained through three years on treatment.PLoS ONE 2010; 5(9): e12731.(First three years of follow up and partial outcomes only.)

Rosen S, Ketlhapile M, Sanne I, Bachman DeSilva M. Differences in normal activities, job performance and symptom prevalence between patients not yet on antiretroviral therapy and patients initiating therapy in South Africa. AIDS 2008; 22 (suppl 1):S131-39.(Baseline data and partial outcomes only.)

Conflicts of interest

The authors report no conflicts of interest pertaining to this manuscript. I.S. is the Managing Director of Right to Care, a South African nongovernmental organization that supports the delivery of HIV treatment at the study sites.

Partial results of the current analysis were presented at the XIX International AIDS Conference, Washington DC, July 22–27, 2012 (Poster MOPE760).


1. Nash D, Katyal M, Brinkhof MWG, Keiser O, May M, Hughes R, et al. Long-term immunologic response to antiretroviral therapy in low-income countries: a collaborative analysis of prospective studies. AIDS. 2008; 22:2291–2302.

2. Etard J-F, Ndiaye I, Thierry-Mieg M, Guèye NFN, Guèye PM, Lanièce I, et al. Mortality and causes of death in adults receiving highly active antiretroviral therapy in Senegal: a 7-year cohort study. AIDS. 2006; 20:1181–1189.

3. Floyd S, Molesworth A, Dube A, Banda E, Jahn A, Mwafulirwa C, et al. Population-level reduction in adult mortality after extension of free antiretroviral therapy provision into rural areas in northern Malawi. PloS One. 2010; 5:e13499

4. Gargano JW, Laserson K, Muttai H, Odhiam F, Orimba V, Adamu-zeh M, et al. The adult population impact of HIV care and antiretroviral therapy (ART)- Nyanza Province, Kenya, 2003–2008. AIDS. 2012; 26:2003–2008.

5. Herbst AJ, Cooke GS, Bärnighausen T, Kanykany A, Tanser F, Newell M. Adult mortality and antiretroviral treatment roll-out in rural KwaZulu-Natal, South Africa. Bull World Health Organ. 2009; 87:754–762.

6. Beard J, Feeley F, Rosen S. Economic and quality of life outcomes of antiretroviral therapy for HIV/AIDS in developing countries: a systematic literature review. AIDS Care. 2009; 21:1343–1356.

7. Resch S, Korenromp E, Stover J, Blakley M, Krubiner C, Thorien K, et al. Economic returns to investment in AIDS treatment in low and middle income countries. PLoS One. 2011; 6:e25310

8. Rosen S, Larson B, Brennan A, Long L, Fox M, Mongwenyana C, et al. Economic outcomes of patients receiving antiretroviral therapy for HIV/AIDS in South Africa are sustained through three years on treatment. PLoS One. 2010; 5:e12731

9. Fox MP, Shearer K, Maskew M, Macleod W, Majuba P, MacPhail P, et al. Treatment outcomes after seven yers of public-sector HIV treatment at the Themba Lethu Clinic in Johannesburg, South Africa. AIDS. 2012; 26:1823–1828.

10. Statistics South Africa. Mid-year population estimates. 2011;. http://www.statssa.gov.za/publications/P0302/P03022011.pdf[Accessed 30 October 2012].


11. Johnson LF. Access to antiretroviral treatment in South Africa, 2004–2011. South Afr J HIV Med. 2012; 2012:22–27.

12. Statistics South Africa. Quarterly Labour Force Survey Quarter 4. , 2011;. http://www.statssa.gov.za/publications/P0211/P02113rdQuarter2011.pdf[Accessed 30 October 2012].


13. Kakinami L, de Bruyn G, Pronyk P, Mohapi L, Tshabangu N, Moshabela M, et al. The impact of highly active antiretroviral therapy on activities of daily living in HIV-infected adults in South Africa. AIDS Behav. 2011; 15:823–831.

14. Weiser SD, Gupta R, Tsai AC, Frongillo EA, Grede N, Kumbakumba E, et al. Changes in food insecurity, nutritional status, and physical health status after antiretroviral therapy initiation in rural Uganda. J Acquir Immune Defic Syndr. 2012; 61:179–186.

15. Habyarimana J, Mbakile B, Pop-eleches C. The impact of HIV/AIDS and ARV treatment on worker absenteeism:implications for African firms. J Hum Resour. 2010; 45:809–839.

16. Thirumirthy H, Zivin JG. Health and labor supply in the context of HIV/AIDS: the long run economic impacts of antiretroviral therapy. Econ Dev Cult Change. 2012; 61:73–96.

antiretroviral therapy; economic outcomes; employment; HIV/AIDS; South Africa

Supplemental Digital Content

This is an open-access article distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivitives 3.0 License, where it is permissible to download and share the work provided it is properly cited. The work cannot be changed in any way or used commercially. http://creativecommons.org/licenses/by-nc-nd/3.0.

© 2014 Wolters Kluwer Health | Lippincott Williams & Wilkins

Share this

Medikidz explain HIV

Medikidz is the world’s first medical education brand for children, founded by 2 doctors,  Dr Kim  Chilman-Blair and Dr Kate Hersov, who were frustrated  by the lack of engaging education for their young patients. Using a team of 5 superheroes called "The Medikidz"  they have created over 50 engaging comic book titles speaking to young people about general health and medical issues in a fun way that they can understand. Written by Doctors, peer reviewed by leading specialists and endorsed by associations and charities – Medikidz is credible, unique and engaging education that will drive positive health behaviours in children.

The ‘Medikidz explain HIV’ comic book has been brought to life here in South Africa with the help of Abbvie, a healthcare sponsor. The book has been peer reviewed by Dr Leon Levin and Prof Ashraf Coovadia.

The story begins with Sipho who is out playing football with his friends, when his mum turns up, reminding him to take his medicines. His friends are amused, but Sipho doesn't want anyone to know about his HIV, so he's furious.

Before things can get out of hand, the Medikidz teleport all of them to Planet Mediland on a medical adventure to get the low down on HIV, the effects on the body, how it's treated and the importance of sticking to the treatment plan!

More info at http://www.medikidz.com/ or the Webshop at http://www.medikidzshop.co.za

Send requests for  "Medikidz explain HIV" comic books to deborah.shikhati@abbvie.com and copy Kate Turok at in kateturok@medikidz.com)


Share this

Pediatric Disclosure materials.02/2013

This series of booklets is designed to aid caregivers of children living with HIV in the step-by-step disclosure process. The booklets are available for download in color and black and white. Accompanying cue cards offer guidance for health care providers to use in introducing these booklets to caregivers.

Healthy 1 Booklet Thumb
Booklet 1: How to Keep Healthy

This booklet is written for children from 2-6 years old, a time when children may ask many questions about why they go to the clinic or why they have to take medicines. (Download colour or Black and White version and cue cards)
Healthy 2 Booklet Thumb
Booklet 2: Knowing about Myself

This booklet is written for children who range from 6 to 12 years of age and are able to understand more complex information. (Download colour or Black and White version and cue cards)
Healthy 3 Booklet Thumb

Booklet 3: Living a Life of Health

This booklet is meant for children who are over 9 years old. (Download colour or Black and White version and cue cards)


Share this

Positive Connections: Leading Information and Support Groups for Adolescents Living with HIV. 25/10/2013

Published by Interagency Youth Working Group

Positive Connections: Leading Information and Support Groups for Adolescents Living with HIV is a unique guide that provides facilitators with background information about the needs of ALHIV, tips for starting an adult-led information and support group, and 14 sessions to follow in a group setting. The goal of the guide is to help ALHIV:
  • Understand their HIV diagnosis and participate in the management of their care and treatment.
  • Learn that many young people live healthy and productive lives while living with HIV.
  • Identify strategies for positive living including adhering to their treatment regimen.
  • Prevent transmitting HIV to others; avoid re-infection; consistently use family planning to prevent unintended pregnancy; and learn how to avoid infecting their babies, if they want to start a family.
  • Develop life skills such as understanding their emotions, communicating effectively, dealing with stigma and discrimination, making decisions about their future, and improving their quality of life.
Positive Connections was designed to be used globally. However, because the context of HIV and young people varies tremendously from country to country, some countries might like to adapt the document to more closely align with their specific needs, programs, and policies. Learn more about how FHI 360 can assist with the adaptation process.

Positive Connections is available for download below both as a single file and as individual parts:

Part 1 (2013, 33 pages, 1.25 MB)

Part 2 (2013, 43 pages, 1.43 MB)

Part 3 (2013, 22 pages, 1.69 MB)

Part 4 (2013, 59 pages, 946 KB)

Part 5 (2013, 41 pages, 695 KB)

Share this

XVIII International AIDS Conference, Vienna 18-23 July 2010

“In the 80s people expected the worst. In the 90s there was hope, followed by euphoria. Now…there are unforeseeable problems arising with long term survival. Life is not predictable for anybody, but this added uncertainty…makes decisions such as age of retirement, provisions for the future etc more difficult”
(Gay man, 50Plus)

What’s the UK data?

 - More people with HIV over 50 than ever before (8722 in 2007)
 - Set to double over next five years
 - Newly diagnosed life expectancy rising into 70s
 - 50Plus surveyed 325 MSM with HIV over 50 within 420 older PWHIV overall
 - Range from long term survivors to newly diagnosed
 - Oldest MSM respondent in survey aged 78

Financial difficulty

“My options for earning are poor now. As I get older, I foresee it will be almost impossible to find paid work.“

“Somehow, the category 'Financial difficulty' doesn't begin to address the unending stress of permanent financial anxiety”

“The specific worry that my current and future benefits are always under threat, and the insecurity that situation creates”

“Lack of funds for my old age, since I was diagnosed in 1985 I regarded this as a death warrant and ceased to make any pension provisions.”

Health and self care

“My main concern is for how long I can continue with my medication… as I get older will the problems get worse?”

“The worry that, if I needed to be cared for, even for a short period, I could lose control over taking my ARVs.”

“I am getting medical conditions that I thought would come much later in life. I wonder what is going to go 'broke' next.”

“Are there any gay care homes?”

“The thought of ending up in a straight residential / nursing home fills me with dread. Would be like going into the closet and then having HIV to contend with on top.”

Health and social services concerns

“Whenever I have a problem not directly related to my CD4 count or viral load, then I am referred to my GP, but my GP… refers me back to the HIV
clinic as they tend to see all problems in the context of my HIV. I end up being piggy in the middle.”

“Our local authority does not think HIV is prevalent in its community. Therefore no trained staff allocated to our needs exist or facilities available.”

“Medical care and support are excellent at present - but can this be maintained for decades to come? Will future politicians/governments decide to cut HIV health care ?”

Mental health

“I am particularly concerned about mental impairment, and early onset of dementia”

“Not knowing what the long-term effects of medication and HIV might be on my health”

“HIV has severe emotional links, causing me sleeplessness, worry and the feeling of utter destruction.”

“If health and social care could be integrated in some kind of one stop shop and we also had access to peer led support groups where we can discuss things with each other, we might not end up running the risk of falling into depression or severe mental health crises.”

Social stigma

“Currently, the main problem is totally unsuitable home care e.g. untrained, unprofessional, prejudiced carers.”

“I also fear that in case I need to be cared for, the carer would be as ill-informed and prejudiced about HIV as the rest of the general public.”

“I don’t want to feel discriminated against in my old age because of my status”

“HIV is not the only stigma…age is stigmatised in gay communities”

“Also old and wrinkly is not a good look”

What help did older gay men want?

 - Information about HIV and health issues for older people (75%)

 - Social care (64%)
 - Social support & networking (58%)
 - Physical therapy (57%)
 - Counselling/emotional support(48%)
 -  Financial advice & debt management (38%)
 - Employment advice (26%)

Download the poster As I get older, will the problems get worse? here (PDF. 199.63KB, 1pg)

Share this

An Introduction to Dietary Supplements for People Living With HIV/AIDS. 24/6/10

Ensuring that your body maintains optimal levels of key nutrients can be critical in maintaining your health.

The Body

By Warren Tong
24 June 2010

Table of Contents:

-Why Bother With Supplements?
-Does Age Matter?
-Are There Any Risks to Taking Supplements?
-What If You Can't Afford Supplements?
-What Nutrients Should You Take Supplements For?
-Multivitamins: The All-in-One Solution


Staying healthy when you're HIV positive is about so much more than taking antiretrovirals. Yes, HIV medications are the most important part of the equation for most people. However, they're not the whole story: For instance, ensuring that your body maintains optimal levels of key nutrients can be critical in maintaining your health.

Much of the time, people with HIV can maintain good nutrient levels simply through a balanced diet, regular exercise and a healthy overall approach to the way they take care of their body. But it's not always easy to do this -- and sometimes, no matter how hard you try, it's still not enough to ensure that you get all the nutrients you need. When this happens, taking supplements can help fill the gaps.

This article will answer a few common questions about vitamins and supplements for people with HIV/AIDS, and provide quick introductions to some of the more popular supplements that HIV-positive people take.

Please note that this article is not meant to be a comprehensive review of everything a person with HIV needs to know about supplements. It's just the beginning of the conversation, and we hope you'll add your own thoughts in the comments section to help that conversation along.

Share this



Share this

A Diet for HIV

Improve wellness and quality of life of those affected


The human immunodeficiency virus (HIV), is a virus that causes acquired immunodeficiency syndrome (AIDS). According to the U.S. Centers for Disease Control and Prevention (CDC), 42,655 new cases of HIV/AIDS were diagnosed in 2007 in 33 states with confidential reporting systems. HIV damages the immune system and reduces the body's ability to fight toxins, which increases risk for numerous health problems. In addition to medical treatments, a healthy diet may improve wellness and prevent complications of HIV.


While dietary measures cannot cure HIV, they can improve wellness and quality of life of those affected. According to the US Department of Health and Human Services (HHS), a healthy diet is vital toward maintaining immune system support, energy and strength throughout a person's life. It may also help prevent infections and other potential complications of HIV, reduce the progression of the illness, prevent or alleviate side effects of medical treatments and help the body better utilize medications.

Sponsored Links

Essential Nutrients

A healthy diet includes foods from all essential nutrient groups. HHS suggests sufficient intake of protein for muscle growth and immune system strength, carbohydrates for energy, fat for additional energy and nutrient absorption, vitamins and minerals for support of body processes, and water, which supports cell shape and a platform for body processes to take place. Fruits and vegetables provide ample antioxidants (disease-fighting nutrients), water and dietary fiber, which supports digestive wellness.

Basic Guidelines

While individuals' specific dietary needs vary, a diet based on healthy foods consumed in appropriate balance is suggested for people with HIV. According to dietary experts at Tufts University, a healthy diet for people with HIV includes five to six servings of colorful vegetables and fruits daily and regular intake of whole grains, lean protein and healthy fats. Simple sugars, such as those found in candy and soft drinks, should be limited or avoided. At least one serving of nuts, seeds or legumes daily is also suggested. Meals should contain complex carbohydrates, lean protein and unsaturated fat.

Optimum Foods

Within each nutrient group, those richest in nutrients and lowest in added sugars and saturated fats may provide most benefits for people with HIV. Tufts University recommends a variety of fresh, colorful fruits and vegetables for broadest nutritional benefits and whole grains over processed grains at least 50 percent of the time. Examples of nutrient-rich whole grains include whole wheat, spelt, oats, barley, long-grain rice, quinoa and popcorn. Ideal protein sources include skinless-white meat poultry, fish, extra-lean beef and low-fat dairy products. Unsaturated fats stem from foods such as olive oil, canola oil, safflower oil, fatty fish, nuts, seeds, avocado and nut butters.

Additional Suggestions

In addition to healthy foods, lifestyle measures, such as regular exercise and food safety precautions, may support wellness in people with HIV. The Mayo Clinic suggests that people with HIV aim for the healthiest possible diet while avoiding foods that increase risk of infection, such as unpasteurized dairy products, raw seafood/sushi, raw eggs and undercooked meat. Purified water may also prevent harmful bacteria from entering a person's body. Appropriate sleep, relaxation and exercise can promote wellness and reduce symptoms of depression that may stem from HIV. Doctor's guidance is suggested for optimum wellness and dietary results.

Read more: here


Share this

Nutritional Supplementation has Only Modest Benefits for Patients with HIV. 9/6/10

Two studies have cast doubt on the value of nutritional supplements for patients with HIV


By Michael Carter
9 June 2010

Two studies have cast doubt on the value of nutritional supplements for patients with HIV. The first study, published in the July 1st edition of Clinical Infectious Diseases showed that the provision of nutritional support has only modest benefits for HIV-positive adults without severe wasting. A separate study conducted amongst HIV-positive children in Uganda, and published in the Journal of the International AIDS Society showed that doubling doses of vitamins and minerals did not affect disease progression, nor did it boost weight or CD4 cell count.

A total of 636 antiretroviral-naïve patients were enrolled in the adult study and on a three-to-one basis were given nutritional supplementation or standard of care. “We observed an improvement in various nutritional parameters in the supplement group, but this was not statistically significantly different from the members of the control group”, comment the investigators.

Nevertheless, the investigators believe that their study has made a number of important contributions, most especially that they showed that it was feasible to deliver nutritional support to a food-insecure population via clinics.

Nutritional supplements and outcomes amongst HIV-positive adults in India

Food insecurity is widespread in the world regions hardest hit by HIV. Malnutrition is common in people with HIV in these areas, and this has been associated with faster disease progression.

Investigators hypothesised that supplementation with added calories and fat would improve the nutritional status of patients with HIV, and possibly their body composition and CD4 cell count.

They therefore conducted a prospective, six-month study in southern India between 2005 and 2007.

At the first baseline visit, patients provided details of their diet to a nutritionist who calculated their daily intake of calories, protein and fat. The patients’ height and weight were assessed and their body mass index calculated. Individuals’ mid-arm circumference was also measured.

Blood samples were obtained to assess the patients’ CD4 cell count and levels of haemoglobin, serum albumin, triglycerides, and cholesterol.

All the patients were given multivitamins and prophylaxis against opportunistic infections.

Nutritional supplementation providing 400 calories per day, 15 g of protein and 6 g of fat was given to three-quarters of patients. The other 25% of patients constituted a control group.

After six months, the effect of supplementation on weight, BMI, body composition, CD4 cell count and blood chemistry was measured.

There was a high rate of discontinuation (30%), and 10% of patients died. The patients who did not complete the study had more advanced HIV disease having significantly lower CD4 cell counts (p < 0.001), and lower serum albumin (p < 0. 001) than individuals who completed the study

The investigators comment, “patients who were severely ill, who were about to initiate antiretroviral therapy, or who required hospitalisation were not included in the study, and this may have been the group most likely to benefit.”

Of the 361 patients who completed the study, 282 received supplementation. The mean age was 31 years and mean weight was 50 kg. Approximately a third of patients were severely malnourished.

Although patients in the control group had a lower daily calorific intake (1616 vs. 1911, p < 0.001), they nevertheless had a higher baseline CD4 cell count than patients who received supplementation (488 vs. 365 cells/mm3).

The investigator’ first set of analysis showed that supplementation had a number of benefits. Compared to the control group, the individuals who received six months of nutritional supplements had significant gains in weight, BMI, mid-arm circumference, and albumin levels (all p < 0.001).

However, after adjusting for baseline differences in CD4 cell count, age and sex between the two study arms, none of these changes remained statistically significant.

Next, the investigators categorised the patients who received supplementation according to their CD4 cell count: below 200 cells/mm3; 201-499 cells/mm3; and above 500 cells/mm3.

Regardless of CD4 cell count, six months of supplementation increased weight, BMI and mid-arm circumference (p < 0.001).

Improvements were greatest in patients with the lowest CD4 cell counts.

“In summary”, write the investigators, “an energy-dense oral micronutrient supplement did not have additional benefits on nutritional parameters or immune function among antiretroviral therapy-naïve HIV-infected individuals in South India, compared with high-quality standard of care. The effect of supplementation on specific subsets of patients and on preserving immune function needs further research.”

Micronutrients and disease progression in children

A separate study conducted in HIV-positive children in Uganda found that increased doses of key micronutrients did not reduce the risk of disease progression.

A total of 847 children aged between 1 and 5 years were recruited to the study, which is published in the Journal of the International AIDS Society.

The children were randomised to receive double the recommended daily allowance of 14 vitamins and minerals, which were taken daily for twelve months, or the standard daily dose of six vitamins, which were taken for six months.

After twelve months, 6% of the children who received increased amounts of vitamins and minerals had died compared to 7% of those who received the standard dose.

Mortality rates were also similar between the two groups when the investigators restricted their analysis to those taking antiretroviral therapy (7% vs. 7%).

In addition, increased amounts of vitamins and minerals did have any benefits for either weight or CD4 cell count.


Swaminathan S et al. Nutritional supplementation in HIV-infected individuals in South India: a prospective interventional study. Clin Infect Dis 51: 51-57, 2010.

Ndeezi G et al. Effect of multiple micronutrient supplementation on survival for HIV-infected children in Uganda: a randomised, controlled trial. Journal of the International AIDS Society, 13: 18, 2010.

Share this

Regular Dietician Consultation Effective at Preventing HAART-Associated Fat Changes. 25/07/07

Edwin J. Bernard,
Wednesday, July 25, 2007

A twenty minute consultation with a dietician every three months appears to be effective at lowering drug-associated lipid increases following initiation of highly active antiretroviral therapy (HAART), according to a small, randomised trial presented to the 4th IAS Conference in Sydney on Wednesday.

Dietary change is recommended first-line dyslipidaemia intervention

Many individuals who begin HAART see rises in their total cholesterol levels as well as in the more harmful forms of lipids, LDL cholesterol and triglycerides. In some cases, these are high enough to warrant treatment with lipid-lowering drugs in order to reduce the risk of cardiovascular disease.

However, US dyslipidaemia guidelines recommend lifestyle changes, including improving dietary habits, as a first-line intervention for HIV-associated dyslipidaemia, although there is little hard evidence to support this approach in HIV-positive individuals.

The investigators – from Hospital de Clinicas, Universidade Federal de Rio Grande do Sul in Porto Allegre, Brazil – had previously studied aerobic exercise along with a low fat diet in individuals on HAART already presenting with dyslipidaemia and body fat changes. However, this study was of short duration, and although this intervention improved participants’ quality of life no significant changes were observed in plasma lipid levels.

Study design

In order to evaluate the effect of dietary orientation and intervention in blood lipids in treatment-naive individuals starting antiretroviral therapy for the first time, 90 individuals initiating HAART were randomised into two equal-sized groups.

At baseline, both groups received nutritional counselling to reduce consumption of simple carbohydrates as well as saturated and trans fats, and to increase consumption of complex carbohydrates and fibre. Body mass index, waist/hip ratio and lipid profiles were also taken at baseline and at three monthly intervals, and all 90 were asked to recall everything they had eaten in the previous 24 hours at baseline and after six and twelve months.

The 45 individuals in the dietary intervention group also received a brief, twenty-minute consultation with a dietician every three months. The consultation included nutritional counselling based on US Department of Health and Human Service’s National Cholesterol Education Program (NCEP) guidelines, which aimed to help the participants achieve the ideal balance of macronutrients and to reach the NCEP guidelines-recommended target of total cholesterol, HDL and LDL cholesterol and triglycerides.

In order to accurately assess the effect of this intervention on HAART-related lipid changes, the investigators only included in their final analysis those individuals who maintained an undetectable viral load (< 50 copies/ml) at six and twelve months. This, explained Dr Eduardo Sprinz, presenting, was the investigators’ way of excluding non-HAART-adherent individuals. This removed five individuals from the control group and two individuals from the intervention group.

A further three individuals had not yet completed the twelve month protocol (two in the control group, and one in the dietary intervention group). Consequently, the analysis included 42 individuals in the dietary intervention group and 38 in the control group. At baseline, there were no significant differences in the gender (60%-63% female), median age (37-38 years), percentage of smokers (26%-29%), body mass index (23-24), waist-to-hip ratio (0.86) or CD4 count (173-181 cells/mm3) between the two groups.

Significant lipid changes observed

Between baseline and 12 months, the individuals in the intervention arm had a significant fall in their total daily average caloric intake (from 2,655 Kcal/day to 2,289 Kcal/day), while those in the control group saw their intake rise from 2,600 Kcal/day a day to 2,814 Kcal/day; difference between groups, p < 0.001)

Similarly, daily intake of fats dropped from 31% of total caloric intake to 21% among those in the intervention group but remained unchanged in the control group (difference between groups, p < 0.001).

Both the average body mass index and waist/hip ratios remained stable in the intervention group but increased in the control group (BMI difference between groups, p < 0.001; waist/hip ratio difference between groups, p = 0.046).

Between baseline and at twelve months, mean total cholesterol and LDL-cholesterol levels were unchanged in the intervention group whereas mean total cholesterol levels increased in the control group from 150mg/dl [3.88mmol/l] to 189mg/dl [4.89mmol/l] while LDL-C levels rose from 85mg/dl [2.20mmol/l] to 106mg/dl [2.74mmol/l]. (p < 0.001 for all differences between groups).

Triglycerides were actually reduced after twelve months in the dietary intervention group from 134mg/dl [1.51mmol/l] to 101mg/dl [1.14mmol/l]. However, triglycerides increased over twelve months in the control group from 134mg/dl [1.51mmol/l] to 158mg/dl [1.78mmol/l] (difference between groups, p < 0.001).

Regular nutritional counselling for everyone initiating HAART recommended

Dr Sprinz noted that, since he and his colleagues had documented the impact of changing dietary intake on plasma lipid levels in this study, “this nutritional intervention was shown to be effective in preventing changes in the lipid profile of HIV-positive individuals who start HAART.”

He added that a one-off “routine nutritional intervention was not enough to control HAART-associated lipidaemia” and that a short, three-monthly nutritional intervention was able to do so.

He concluded that giving this type of advice is safe, effective and should be incorporated into the clinical care of individuals who initiate HAART “and not,” he stressed, “after the development of dyslipidaemia.”


Lazzerati R et al. Dietary intervention when starting HAART prevents the increase in lipids independently of drug regimen: a randomized trial. Fourth IAS Conference on HIV Pathogenesis, Treatment and Prevention, Sydney. Abstract WEAB303, 2007.

Share this

A Practical Guide to Nutrition for People Living with HIV (CATIE). 2008

PDF icon nutrition.pdf560.35 KB

“Good nutrition can keep you healthy and decrease your chances of getting other chronic diseases. People with HIV who get the nutrients they need get sick less often, are stronger and have improved quality of life. With good nutrition and medical care you can not only live longer with HIV… you can live better.” Download PDF below

Share this

Africa: Nutrition And Disease Debate Should Shift to Science. 23/08/07

SciDev.Net (London)
23 August 2007
Wieland Gevers

Science needs to be injected into the controversy over use of nutritional supplements in tackling HIV and tuberculosis, says Wieland Gevers.

An astonishing abundance of over-the-counter food supplements and food extract products in South Africa - and many other African countries - claim to modulate the human immune system to prevent or treat deadly infections such as HIV and tuberculosis.

Their presence in the marketplace has fuelled decade-long controversies about nutritional influences on immunity to the two pandemics. In South Africa, much of the coverage has, unfortunately, focused on politics and personalities. Now it should shift to science.

A panel under the auspices of the Academy of Science of South Africa has begun this process with its report released this week based on a 16-month analysis of all the relevant research.

Healthy eating habits

One important message of the report is that there is no evidence that nutritional interventions are an alternative to using the correct medications at the correct times. (See Improved nutrition cannot replace HIV or TB drugs)

In the case of tuberculosis, this means daily anti-microbial drugs for up to six months, as soon as tuberculosis is detected in the lungs.

Nutritional support is helpful, but cannot substitute for the specific drug combinations required for a cure.

For HIV, this means a lifetime on a daily combination of various antiretroviral drugs but not necessarily as soon as person is diagnosed.

Drugs are administered only when there is an opportunistic infection or the immune system's CD4 cells have dropped below a specified level.

A key issue examined by the panel is whether specific kinds of nutritional intervention can help stave off the day when drugs are absolutely required to treat HIV infections; we believe they may, but much more research is needed to be sure.

We are not saying nutrition is insignificant. Healthy eating habits still have a hugely important role to play in managing these - and other - infections. Eating a mixed diet including fruit and vegetables on a daily basis is especially important in developing countries such as South Africa where nutritional deficiencies are still rife.

The need for research

The panel noted a startling lack of well-designed, relevant studies in the field of nutritional intervention for people with HIV and/or tuberculosis, especially studies in impoverished settings.

There is an absence of evidence-based agreement on the best ways to test the extent of an individual's malnourishment in terms of vitamins and minerals, and how dysfunctional the immune system really is.

To achieve this, the country's top experts will have to put their heads together and update their knowledge. We need tests that are reliable, appropriate, affordable and available.

We need to establish research groups that will investigate the new discoveries being made every day about the vitamins we have had for half a century without properly understanding them. For example, vitamins A and D are now known to be intimately involved in the defence of the body against both HIV and TB.

Recent research has shown that low-grade inflammation in the gastrointestinal tract plays a pivotal role in the speed and severity of HIV infection, and may be a major driver of progression to AIDS. The intestine may well be the next focus in the search for better support of people who are HIV-infected.

The panel recommends a crash research programme involving virologists, immunologists, people specialising in inflammatory bowel disease and food technologists to establish the potential of interventions aside from those associated with conventional nutrition.

This absence of thorough research is a sad reflection in a country and continent where hunger and micronutrient deficiencies are common.

The astonishing chemical complexity of food may also be contributing to the confusion in the debate about nutrition and infections. Plants contain thousands of chemicals that help them grow and fight off predators. Some affect humans. Few are well understood.

We have recommended that tackling the absence of scientific research capacity in nutrition should be a policy priority.

Recommending caution

The panel brought together researchers, nutritionists, immunologists, biochemists, infectious disease physicians and paediatricians, policy experts and epidemiologists. The process of achieving consensus forced people into confronting the latest findings in areas outside their own specialisations.

The panel has had to pick away systematically at the legends, myths, marketing hype and salesmanship that have thrived like weeds around two of the most serious diseases facing humanity.

Many promising new avenues of research have opened up. It is possible that in the future, some types of foods may be confirmed as having the power to reduce the onslaught of HIV, especially food that dampens the inflammation caused by the virus in the gut.

But there is enough evidence at present to suggest caution where exaggerated claims are made on behalf of any food, nutritional supplement or plant chemical. And under no circumstances should anyone stop taking medically-prescribed drugs in favour of a particular diet or vitamin.

Wieland Gevers is executive officer of the Academy of Science of South Africa.

Share this

Food Assistance Programming in the Context of HIV.

WFP and FANTA. A guide developed to improve the design and implementation of food security programs that respond to HIV-related challenges as well as HIV programs that utilize food and food-related activities to achieve HIV-related outcomes. 

As the links between food insecurity and HIV become better understood, there is increasing acknowledgment in the development community of the corresponding need to integrate food and nutritional support into a comprehensive response to the epidemic. Food Assistance Programming in the Context of HIV addresses this need by providing a set of tools, promising practices and key considerations that enhance the flexibility and appropriateness of program design and implementation modalities. 

The guide is for program directors, program advisors and senior program managers who are directly involved in the analysis and formulation of food assistance strategies and country program activities at HQ and in regional and field offices. Download PDF (1.54 MB).  Hard copies may be requested from FANTA by emailing fanta@aed.org.


Share this

HIV/AIDS, TB and Nutrition

Scientific inquiry into the nutritional influences on human immunity with special reference to HIV infection and active TB in South Africa. An exhaustive analysis of all scientific research on the links (if any) between improved nutrition and the treatment of both HIV/AIDS and tuberculosis has found no evidence that healthier eating is any substitute for correctly-used medical drugs.

The detailed report by a 15-member consensus panel of the prestigious Academy of Science of South Africa (ASSAf) has been given to government and is now available online. ''The panel has concluded that no food, no component made from food, and no food supplement has been identified in any credible study as an effective alternative to appropriate medication,'' said Wits professor and National Health Laboratory Services pathologist Barry Mendelow, a specialist in blood disorders who chaired the study.  The study can be downloaded here (PDF,2MB)

Share this

Nutrition and HIV/AIDS: A Training Manual.

Nutrition plays a critical role in comprehensive care and support for people living with HIV/AIDS. Nutritional interventions can help manage symptoms, promote response to medical treatment, slow progression of the disease, and increase the quality of life by improving daily functioning. This manual is intended to complement materials used in institutions of higher learning to improve the quality of training in nutrition and HIV/AIDS. The manual provides a comprehensive source of information on nutrition and HIV/AIDS, and provides instructors with technical content, presentations, practical exercises, and handout materials that can be used for planning and facilitating courses and lectures. The intended users of the manual are instructors of masters or undergraduate level students of medical or health sciences, applied human nutrition, dietetics or home economics, and food technology and agriculture. It is expected that students exposed to these materials will acquire enhanced knowledge and skills in the nutritional management of clients infected with HIV. Download in Sections.

Share this

Positive Living: Food & Us.

John Snow International - UK. (2003)John Snow Int.  This book is aimed at anyone who wants better health, beautiful skin and hair and healthy teeth. It is also to help people avoid the diseases and conditions that have become so common since the 20th Century changed our way of eating. These include diabetes, high blood pressure, heart disease, obesity, tooth decay and increasing kinds of cancer. Top of the list, of course is AIDS, which has replaced cancer in the last century and TB in the one before, as the ‘Big Demon ’ whose name cannot be mentioned and whose diagnosis brings about total loss of hope. It is very important that people understand that HIV is just one more disease on the list. The secret to living positively is really very simple:

· Having a positive attitude to your life and your health.
· Learning and sticking to the kind of diet that will give your body all the weapons it needs to keep it strong and healthy.

The writer of this book is Lynde Francis, a grandmother who has been living with HIV since being diagnosed in 1986. The methods she has used to stay strong and healthy and not progress to AIDS are what she wants to share with you in this book of nutrition for life. Download here in sections.

Share this

Recommendation for the Nutrient Requirements for People Living with HIV/AIDS, FANTA. 2007

Based on the report of the May 2003 WHO technical consultation on nutrient requirements for people living with HIV/AIDS, this document provides information about the nutrient requirements of people living with HIV in a concise, two-page format. Download PDF

Share this

Uganda: Nutrition And HIV. 23/08/08

The Monitor (Kampala)
23 August 2007
Susan K. Muyiyi

People living with HIV/Aids need more energy than those without the virus. Gakenia Wamuyu Maina, a nutritionist with Makerere University Institute of Public Health attributes this to a high metabolism rate.

"Research has shown that HIV positive people with symptoms require 20-30 percent more energy than those without the virus.

And those who haven't yet shown symptoms require 10 percent more energy than people in their age group," Maina explains. HIV positive children with symptoms need 50-100 percent more energy than those who don't have the virus.

A 2005 World Health Organisation report on HIV/Aids in Africa highlights the integration of nutrition in the essential package of care treatment and support for people living with the virus.

Although proper nutrition cannot cure HIV/Aids, it can ensure optimal benefits from the use of antiretroviral treatment, which is essential to prolong the life of patients and prevent transmission of HIV from mother to child. Children born to HIV positive mothers can benefit from other fluids and drinks other than breast milk which puts the baby at risk of contracting the virus.

Food is known for its medicinal qualities and enhancing the bodily functions. Good nutrition prolongs and improves the quality of life. It enhances the body's ability to fight opportunistic infections like diarrhoea and mouth ulcers and helps achieve and maintain optimal body weight and strength.

Maina says sufficient nutrition improves the effectiveness of drug treatments. "Proper nutrition is eating a balanced diet regularly," she explains, adding it is a myth to think that you need an expensive diet when you are HIV positive. A balanced diet involves eating the right types of food in the right amounts, which any household can afford.

It is important to the vary the foods you eat. For example, if you had a matooke, you can alternate your carbohydrate source with sweet potatoes. Have matooke with groundnut stew, vegetables, avocado, a glass of juice and pawpaw, instead of having a plain meal.

Maina says that eating small regular meals can help meet the energy demand of HIV/Aids patients. "If for instance you had your breakfast at7 a.m., make sure that by 10 a.m., you are having something for break, lunch at mid day, snack at three, drink something at 6 p.m. and then have dinner at 8 p.m,"she advises.

Planning your meals is also important to ensure that you don't miss out on the nutrients you need. You can have milk tea, brown bread with butter and an egg for breakfast, take a cup of porridge with milk and a banana for break, have matooke, sweet potatoes and groundnut stew and greens plus a glass of juice or water with glucose for lunch, snack on roast groundnuts and black tea, a glass of milk or juice at 6 p.m. and any fruit of your choice, have irish potatoes and meat plus greens and some fruits for dessert.

The nutritionist adds that if you cannot afford milk daily, you can get protein from another food source like beans and other types of legumes.

Make sure that you have milk, chicken, fish and meat at least once a week. Fruits and vegetables have a high concentration of vitamins and minerals, the reason it is important to eat them often.

The Uganda Aids Support Organisation gives enhanced meals like corn Soya blend, a mixture of maize and soya, which is high in protein. Foods like millet also have a combination of carbohydrates and protein, Maina says.

Enhanced meals can also be home made. You could mix pounded fish with soy or maize flour for porridge. You could also add milk to mashed beans and Irish potatoes and some margarine or ghee, which Maina says improves the nutritional density of the meal.

She also encourages the use of fortified vegetable cooking oil, which is rich in vitamin A. Nevertheless, much as nutrition is important, sometimes people living with HIV face set backs in ensuring optimal nutrition.

What happens when one doesn't have appetite? Maina says that they should try smaller portions of food and plenty of fruits because they are appetite boosters.

Having diarrhoea shouldn't stop one from eating food. Eating more ensures that the person replenishes the energy and fluids lost.

It is also important to note that only a doctor should recommend nutritional supplement when he/she notices a nutrient deficiency.

According to Maina, it is wrong to take more tablets than are recommended by the doctor with the belief that they will be a source of more nutrients.

A multi vitamin supplements is highly recommended because it contains vitamins B and C and is also easily absorbed in to the blood stream.

Food in the right amounts will surely keep the doctor away

Share this

How Long Will You Live With HIV? Take Studies With a Grain of Salt. 9/09/09


"How long will I live?"
It's one of the most pressing, frightening questions facing people with HIV, whether they've been newly diagnosed or have been infected for some time. And like so many other questions in HIV, the answer is frustratingly complex, confusing and ever-changing.
How long will you live with HIV? It depends on who you are. Research suggests that HIVers die sooner if, for instance, they use injection drugs; are coinfected with hepatitis; are depressed; or are pretty much any race and sex other than a white male.
It also depends on where you are. It's convenient to say that HIV-positive people in "developed" countries are likely to live longer than HIV-positive people in "resource-poor" countries like those in sub-Saharan Africa or much of Latin America. But it's more accurate to say that no matter where in the world you're living with HIV, that life will be longer if you have consistent access to quality health care, the most effective HIV treatment and a solid infrastructure (we're talking about the ability to get the basics: emotional support, transportation to a health care facility, clean water, protection from the elements, no wars tearing your villages and cities apart).
It also depends on who you ask. Talk to most anybody who's been a part of the HIV/AIDS community since the 1980s or 1990s, and the answer to "How long will I live?" will probably be, "A hell of a lot longer than if you were diagnosed 15 years ago." It's a lot easier to see today's glass as half full when, for so many years, the ground was littered with the shards of so many shattered lives. HIV treatment has gotten so much better so quickly that it's easy to lose sight of just how much reality has changed for people living with HIV in 2009 compared to 1989, or even 1999 -- or, heck, even 2004, before we said hello to single-pill regimens and integrase inhibitors, and before we knew much of what we now know about the side effects of HIV and HIV meds (and how to prevent or treat them).
But here's the truth as it stands today, for better or for worse: The numbers show that people with HIV don't live as long as people without HIV. We're getting closer, but we're not there yet. A recent study spanning 25 U.S. states calculated that HIVers diagnosed in 2005 could expect to live, on average, 21 fewer years than their HIV-negative counterparts. (That's much more pessimistic than a major international study from last year which predicted that, if you were diagnosed in 2005 at the age of 35, you'd still live to be 72, just six years lower than the average U.S. life expectancy.) If you're a woman, the study suggests, you'll live about three and a half years longer than a man, on average; if you're Hispanic, you'll die sooner than an African American, and both of you will die sooner than a white person.
Here's the thing: In the real world, these two studies and their sharply contrasting, yet very specific numbers don't change anything. It's very easy to read about studies like this and fall into an obsessive trap: "OK, I was diagnosed in 2002, and I'm 33, and I'm a Hispanic woman living in Ohio, so ... multiply by the divisor, carry the two ... that means I'll die on March 29, 2034, during a full moon while Mercury is in retrograde."
Fortunately, it doesn't work like that. These studies are mathematical predictions based on a limited amount of available data. Everyone living with HIV is different: We have different genes, different family histories and different risk factors for all of the unfortunate illnesses and events that can potentially shorten our lives.
So if ever you find your blood pressure rising as you read about the latest study to predict how long you'll live if you have HIV, try to take the findings in stride. You'll die one day. It's going to happen. It may be in 50 years or five. It may because of the HIV, or you may walk across the street one day and get hit by a bus. I don't mean for this to sound morbid or depressing; it just is what it is. All any of us can do is try to make the most of whatever time we're given, however we feel we can best achieve it.
And no study can alter that.


Share this

Resources: NAM

NAM is an award-winning community based HIV information provider. NAM is based in London, in the UK, but their information is known and used across the world. Of particular intrest is:

NAMlife is a new website about living with HIV. Whether you have been recently diagnosed, have lived with HIV for a while, know someone who is, or just want to find out more then this site will have something valuable for you. This is a space where you can find out answers to some of the questions you might have and read about other people's experiences of living with HIV.
A new series of illustrated factsheets for people with HIV.  "The series covers the basic information that people with HIV need to understand about their condition and possible treatment. It is intended to support discussions between healthcare professionals and people living with HIV."
Share this

Resources: The Body

The Body has a large number of very valuable tools and resources for people living with HIV. I would like to highlight two useful resources:

A Resource for people who are recently diagnosed.

For More Information

 My Health Tracker

 You can register on My Health Tracker and use the resource to keep record of all aspects of your healthcare. My Health Tracker can help you organize your HIV treatment information privately and securely in one place. This way, you can take better charge over your health, and you and your doctor can have even more productive conversations about your treatment.

- My Labs
- My Meds
- My Journal
- My Reports


Share this

Sexual and Reproductive Health

Lyn's Comment: Being diagnosed with HIV does not make one any less a sexual being or in any way diminishes the sexual and reproductive rights of an individual:

Share this

Reproductive Choices and Family Planning for People Living with HIV - Counselling Tool.

 WHO 2006

 This tool is designed to help health workers counsel people living with HIV on sexual and reproductive choices and family planning. It also is meant to help people living with HIV make and carry out informed, healthy, and appropriate decisions about their sexual and reproductive lives. This tool addresses:
· How to enjoy a healthy sexual life.
· For clients who do not want a baby, how to prevent pregnancy and further transmission of HIV.
· For clients thinking of having a child, points to consider in making a decision.

This tool is part of the WHO materials on Integrated Management of Adolescent and Adult Illness (IMAI). The tool provides:

· Essential information you need to offer good advice.
· Tips and guidance on how to communicate with clients.
· Illustrations to make the information more clear.

Download - 76 pages

Full text (PowerPoint file, 7,226kb)


Share this

Sexual And Reproductive Health And Rights Of People Living With HIV

1. The Right to reproduction, sexuality and desire

People Living with HIV (PLHIV) have the right to a pleasurable and enjoyable sexual life; the right to intimacy, to have children, and to love.

Sexual and reproductive health rights imply that the choices and decisions regarding our sexuality and reproduction should be ours to make – free of coercion and stigma.

People living with HIV have freedom of choice regarding consensual and pleasurable sexual expression; reproduction, marriage and planning a family. 

HIV positive people also have the fundamental right to access sexual and reproductive health services without fear of being stigmatized or judged for their sexual and reproductive health choices.

2. Articulating the sexual and reproductive dreams and desires of people living with HIV

The sexual and reproductive health desires of people living with HIV are as varied as the epidemic itself.

The issues facing young people living with HIV as they embark on new relationships (repeated disclosure; potential sexual rejection because of HIV status, etc) are very different to the issues facing an HIV positive couple who may wish to conceive (health care provider attitudes; accessibility of appropriate services).

Prioritizing the sexual and reproductive health needs of people living with HIV will necessitate a shift in donor and foundation priorities.

People living with HIV need to guide this process in order to both avoid the 'cherry-picking' approach that dominates the current agenda for many donors and foundations and to clearly articulate what this agenda encompasses.

Addressing the sexual and reproductive health needs of people living with HIV means we also have to address the realities of men who have sex with men; injecting drug users and sex workers.

3. Linking HIV and sexual and reproductive health is part of the core business of the HIV community

HIV, sex and reproduction are intimately linked and at the core of any response to the HIV epidemic. 

Acting on the links is not the sole mandate of the sexual and reproductive health movement.

The HIV community – particularly networks and associations of people living with HIV - need to embrace and guide this agenda. 

It is important that HIV positive people help to lead this ‘linkages’ agenda and to proactively shape the content in order to respond to our sexual and reproductive health needs and rights.

Addressing the diverse range of issues within the sexual and reproductive health mandate will have to cover a diverse range of issues, from the fertility intentions of women living with HIV, to issues facing concordant and sero-discordant couples.

4. A shared responsibility for prevention

The responsibility for reducing transmission of HIV is a shared one and there should be no undue burden on people who are aware of their status.

Safer and responsible sexual behaviour is the responsibility of all partners – irrespective of status.

Promoting a culture of shared responsibility could also improve communication and equality within relationships. PLHIV have a shared responsibility to look after their sexual and reproductive health.

5. Challenging the changing face of stigma and discrimination

Stigma and discrimination have become more subtle.

While people living with HIV still have to contend with blatant discriminatory attitudes, it is imperative that innovative ways are found to document the changing face of stigma and discrimination in various settings.

Sexual and reproductive health care providers can and should play an active role in combating stigma.

Ensuring that the sexual and reproductive health and rights of people living with HIV are met will require that stigma is challenged in all its forms.

Tools such as The People Living with HIV Stigma Index allow us to establish a more nuanced evidence base for understanding and dealing with stigma.

Armed with this evidence people living with HIV should lead the advocacy effort to change policy and strategy and develop appropriate and accessible sexual and reproductive health programmes and interventions.


Share this

Positive Living in the News


Share this

How To Tell Your Child You Have HIV. 27/10/2017

Published by BHEKISISA

More than three decades into the HIV epidemic, some conversations haven't become any easier. This is one of them.

Nokuthula* called her eldest daughter into her bedroom.

Her four kids often joked that this was her “courtroom”. Whenever somebody was beckoned, they knew they were in for a serious talking-to. “We’re going to court,” they would laugh.

But the house was quiet now. Nobody else was around.

Nokuthula and her then 21-year-old sat on the edge of the bed, a mountain of scatter cushions piled up behind them.

Nokuthula felt nervous, emotional. For 10 years she’d held on to the secret she was about to let out, and she had no idea how her firstborn — who had just started dating — would take it.

“In this world, we have this disease you can catch when you sleep with someone,” she started. “But I have people who have helped me understand what this thing is. I’m okay with it. I can live with it.”

Condomise, she advised her daughter.

“She was so cool,” Nokuthula, 42, remembers now. “It wasn’t easy but she understood. She said she had no problem with it. As long as I went to the clinic and took my pills, she would support me.”

But three years on, it’s a conversation Nokuthula can’t quite bring herself to repeat with her youngest daughter — the daughter she was pregnant with when she was first diagnosed.

Before prevention of mother-to child-transmission programmes were introduced in South Africa in 2002, up to 40% of babies born to HIV-positive mothers contracted the virus before, during or shortly after birth. Today, just 1.4% of infants born to women living with HIV become infected with the virus.

Nokuthula’s 12-year-old, born HIV negative, has seen her mother taking medication but hasn’t asked any questions about it. Yet.

“I think she thinks it’s for my arthritis,” says Nokuthula. “I don’t think I can talk to her right now. Maybe when she’s 16 or 17.”

Nokuthula grappled with disclosing her status to her children and still hasn't told her youngest, 12. (Madelene Cronje)

Nearly half of the estimated seven million HIV-positive South Africans are now on antiretroviral treatment, according to the United Nations Joint Programme on Aids. But more than three decades into the country’s HIV epidemic, many parents like Nokuthula still struggle to tell their children about their status.

About 70% of parents living with HIV have disclosed their status to their children, according to a large national survey conducted by the South African National Aids Council in 2014

But the study, the first large-scale research to look at the stigma still attached to HIV, also reveals how difficult it is for many parents to break the silence. Among the almost 10 500 people surveyed, nearly one in four people with children admitted they hadn’t told them.

Bridging that gap is where Tamsen Rochat comes in.

“The epidemic is evolving,” she says. “We need to address and respond to the parenting needs of this rapidly growing population. Supporting parents to communicate and educate their children about HIV is central to that.”

A chief research specialist at the Human Sciences Research Council, Rochat together with a team from the African Health Research Institute in KwaZulu-Natal developed a programme called Amagugu to support HIV-positive mothers in talking to their children about their status.

“The medical profession’s come a long way in beginning to understand children’s psychological capacity,” says Rochat.

“Over the last three or four decades, we’ve seen more and more research that shows that from nearly as young as six children have a capacity to understand perhaps not that death is permanent, but the basic biology around illness.”

Now, Rochat says many psychologists recommend that parents living with serious illnesses ranging from HIV to cancer be open with their children from as early as possible in communicating what’s happening to their bodies.

But for parents faced with having the conversation, it’s a daunting task. What if they ask how I got it? What if they tell someone else? Why do they even need to know?

Unseen and unspoken consequences 
"You have to look at a person as part of a network of social relationships,” says Wits University developmental psychologist Linda Richter.

The director of the university’s Centre of Excellence in Human Development, Richter says that although families are on the frontline of HIV prevention, the focus has tended to be on treating individuals “as if one’s health status, one’s sense of the future and the sacrifices one has to make are unrelated to other people”.

But a parent’s diagnosis affects the entire household. Adolescents who have lost a parent to Aids-related illnesses or are in the care of adults battling these kinds of conditions are more at risk of experiencing mental health problems, feeling isolated from peers and even engaging in transactional sex, reveals 2011 research published in the journal Nature.

Meanwhile, caregivers living with the virus also face their own battles. More recent research reveals that HIV-positive parents may be more at risk of depression and anxiety.

And children can pick up on this from a very early age.

“Human beings are built to respond to stressors,” says Richter. 

From as early as just 20 weeks old, she explains, a foetus is responsive to shocks in its environment. “It’s called stilling — if there’s a loud noise like a gunshot in the house, something that will shock the mother, that stress response will hit the baby and it will still, the metabolism will slow down.”

A two-year-old toddler can feel embarrassed or shy, and notice when others are anxious or sad.

They know when a parent is angry and that they must be still and quiet,” says Richter. “They’re picking up the emotional tone of a household very quickly.”

By the time they reach primary school, children are able to start piecing together concepts about illness and mortality — and this was the age group the Amagugu intervention targeted.

“We call them little scientists at that age,” says Rochat. “They have these radars: even if you manage to hide your medication and you have these extravagant stories about where you go once a month when you have to visit the clinic, they will experience some shift in you — and that’s what we believe drives the poor mental health outcomes in children.”

Nomsa's decision to tell her children her HIV status was in part fueled by their father's illness. She wanted to let her teenagers know she would be okay. (Madelene Cronje) 

The conversation was not going well. Admittedly, Nomusa hadn’t picked the best moment. But with their father lying on what the whole family had come to assume was his death bed, she wanted her two teenagers to know that she also had the virus in her body — and that she was fine, healthy even. Everything was going to be okay.

Her daughter, then 19, sat there in disbelief. Her 17-year-old son got up and walked out. “Was it true, Mom?” he asked her when he finally came home the next day.

According to the health department’s HIV disclosure guidelines, telling a child about one’s own HIV status is a process that should start as early as possible, progressing in detail as a child’s capacity to understand the virus grows.

A five-year-old can grasp the concept of germs and that they need to take medication daily — what the guidelines call “partial disclosure”. But a 12-year-old can understand not only that they have HIV, but also how it’s spread and the implications of infecting someone else.

Covering up a child’s HIV status, say the guidelines, does more harm than good.

There is no comparable framework for HIV-positive parents who want to disclose their own status to their children but Marnie Vujovic, a clinical psychologist at the non-profit Right to Care, believes many of the same rules apply.

“As they mature, children are able to take in more and more information and absorb it in a meaningful way,” she says. “Parents can get a pretty good sense of where a child is just in a conversation — and often they’ll give you natural opportunities to tell them more just by asking questions. That’s a perfect time to say, ‘Okay this child needs more information. He or she has seen something and is concerned about it and I need to answer it honestly and openly as I can rather than side-stepping the issue.’”

The Amagugu intervention sought to teach the participating mothers an age-appropriate way of telling their HIV-negative kids about their status, with toys and games specifically targeted at six- to 10-year-olds.

A sticker activity was used explain how HIV attacks a body: the virus becomes angry red dots, the CD4 cells — bodies that typically help the immune system’s response — are depicted as spears trying to fight it off, and antiretrovirals (ARVs) emerge as green shields.

A memory card game helped mothers to explain their monthly clinic visits and everything the children could expect to see there: doctors, nurses, ambulances, needles.

And throughout the conversation, the mothers were trained to keep the emphasis on their love for the child — to keep their arms wrapped around their shoulders, to speak calmly and reassuringly.

“For this age group of children, the disclosure goes better with more preparation and if mom is more emotionally contained,” says Rochat. For the mothers, it meant counselling sessions before their disclosure to help them to come to terms with their own narrative about how they had contracted HIV.

“You don’t have to tell your kids the whole truth,” says Rochat. “They don’t have to know if you were raped or that your partner cheated on you.”

Instead, the counsellors helped the mothers to craft the stories that were “strength-based and that reflected the love she had for the child” — a story that was true enough, without adding to the hurt.

It would be another 16 years before either one of Nomusa’s teens believed she had HIV — and even then only after she began treatment following the government’s decision last year to provide medication to all HIV-infected people regardless of how sick they are. Previously, most people had to wait until their CD4 count — a measure of the immune system’s strength — fell to 500 before they could start taking ARVs.

She’s been trying to do things differently with her three youngest — aged 10, 14 and 16 — since participating in the Amagugu study, gradually dropping the topic into conversation and playtime.

“It’s been much easier,” she says.

The children don’t seem to believe her just yet. But every few days, they come back with more questions: Did Mommy really mean it? If she has HIV, how come they don’t? The youngest two have since joined her on trips to the clinic and know to be careful around open wounds. Every evening, her 10-year-old reminds her to take her medication.

But that kind of “parentifying” can be concerning, warns Vujovic: “Children need to be able to enjoy life, to play — not be stressed out about whether their parent is going to survive or not.”

Meanwhile, a tactful disclosure provides a real opportunity to educate children on HIV and just how well treatment can work.

“There’s this huge fear that ‘I might lose this person, this person’s going to die’,” says Vujovic. “And I think a really important aspect around disclosure is to reassure — to help children understand just how efficacious the medication is. “It does seem like a sort of modern concept, but we’ve increasingly seen the benefits of families communicating openly,” she continues. “We know there are a number of taboos around having discussions about sexual and reproductive health — but we also know that young people who are able to talk openly with their families are much less likely to engage in risky behaviours.”

'A lot of moms still worry about stigma. We can't be naive about that'
At 13, Sakhile* is fairly typical for his age.

He likes football and accounting, and laughs easily with his siblings — even as he smiles shyly in the company of adults. Every day after school, he does his homework, washes the dishes and cleans his uniform.

At exactly 8pm, just as Generations starts up on SABC 1, he fetches a glass of water and a large, pinkish tablet and takes them to his mother, Zanele*.

He’s coy about what the tablets are for, but he knows. He started asking questions a few years ago when the Amagugu counsellors began visiting the family homestead. Now he’s also learnt about HIV in school. He knows you can contract it by having sex without a condom and he knows that you can get it from an open wound. That’s how his mom said she got it when he asked. She said she wasn’t wearing any gloves.

When she’s ill, he and his five older siblings cook her porridge and fetch her water.

“It helps me to know that she has HIV,” he says quietly. “When she passes away, we must know what killed her, what she was suffering from.”

Sitting next to him on a grass mat on the floor, her twin granddaughters clambering across her lap and five more shrieking loudly in a game of catch outside, Zanele, 51, is fiercely protective of her family unit.

She doesn’t like this community. When the Amagugu counsellors first came to visit her, the whispers among her neighbours left her feeling ostracised. “Bad people,” she calls them.

But she credits the programme with helping her to learn to let it go.

“I don’t care what people say, as long I’m here with my family. We’re strong. Our problems are our problems. Everything stays here.”

“A lot of moms do still worry about the stigma. We can’t be naive about that,” says Rochat.

Just who a child might tell about a parent’s HIV status was a concern that came up again and again.

To combat it, the Amagugu team introduced a disclosure “safety hand” — a contract between the mother and the child about who it was safe to speak to about her status.

Then they began to notice a change in the children’s behaviour.

“They didn’t want to talk to us anymore,” recalls counsellor Samukelisiwe Dube. “We asked ourselves what had happened, why they didn’t want to talk. Then we realised it was the safety hand.”

The children were sticking to the agreed list of names — and the counsellors’ names weren’t on it.

“After that we had to ask the mothers to make sure that we are also included,” says Dube.

Samukelisiwe Dube is a counsellor with the Amagugu programme. To keep families in the project safe from HIV stigma, children can only discuss their mothers' HIV status with a set of approved adults including counsellors like Dube. (Madelene Cronje)

When the findings from the Amagugu intervention were published in the medical journal The Lancet in August, they showed a significant increase in disclosure.

Nearly 90% of the 235 mothers taking part in the training revealed their status to their children. Among mothers who were not part of the programme, only 56% could say the same

The researchers noted improvements in both the mothers’ and their children’s mental health, better adherence to treatment programmes, and an overall decrease in parenting stress. The Amagugu mothers were also 27 times more likely to take their children with them on their clinic visits.

“Communication is a positive thing,” insists Rochat. “It builds strengths, it builds relationships, and it gives the mother an opportunity to be the hero in her family.”

Even then, some mothers still didn’t think their children were ready to know.

“For all the training and tools we provide, sometimes there has to be this leap of faith, to just trust that it isn’t going to go badly,” says Rochat.

When Zanele told her older children about her diagnosis back in 2004, when she was pregnant with Sakhile, she wanted them to know they could always come to her with their issues.

Now, Sakhile’s big sister keeps track of Zanele’s monthly visits to the clinic and, although the other older children are struggling for work, they always put a little something aside to make sure Zanele has food in her stomach before taking her pill each night.

Telling her family, she says, saved her.

“I’m so proud of my life. As long as I’m with my family, I’m okay.”

Share this

HIV and Aging. 11/09/2017

Published by POZ

Today, more than half of all people living with HIV in the United States are 50 years or older. This is mostly because people are living much longer with HIV thanks to effective antiretroviral (ARV) therapy, and that’s good news.

The bad news is research increasingly shows that diseases that typically strike HIV-negative people in their 60s and 70s are occurring in people with HIV in their 40s and 50s. These concerns have brought the issue of aging with HIV to center stage. One of the biggest unanswered questions is why this is occurring. Whether it’s heart attacks, bone fractures, kidney disease or certain cancers, the rates of these conditions in HIV-positive people are alarming. It’s unclear how much HIV contributes to these conditions and how much is explainable by other factors (such as smoking, HIV drugs and coinfection with other viruses).

But most HIV-positive people can do quite a lot to slow the aging process and guard against the onset of age-related illness. Before first, it’s important to understand how aging works.

What is aging?
When we think of someone as “old,” we tend to think of that person as having lived a certain number of years: 70, 80, 100. For the National Institute on Aging, however, the focus is not on how long someone has been alive, but on the inevitable decline in physical ability and health that occurs once a person reaches later life.

At one time, researchers looked for a central cause of aging, but they’ve since realized that a variety of factors—including our genes, our environment and infections with harmful viruses and bacteria—contribute to the phenomenon of aging in overlapping ways.

Some people win the genetic lottery. They inherit genes that allow them to remain healthy and vital well into their 80s and 90s, whereas others have genes that place them at higher risk for developing cancer or cardiovascular disease by the time they reach their 40s.

Some people are able to minimize environmental and behavioral factors known to hasten the aging process. They eat well, exercise and remain socially and intellectually engaged in life. The effects of such environmental and behavioral factors on a person’s health are profound.

Likewise, some people are able to avoid infection with the most harmful viruses and bacteria throughout their lives, or they have immune systems capable of keeping infections in check. Others may have to contend with harmful infections, such as hepatitis B virus (HBV), hepatitis C virus (HCV), human papillomavirus (HPV), cytomegalovirus (CMV)—and HIV—all of which can significantly increase the risk of health problems later in life.

These factors—genetic, environmental and biological—can overlap and cause us to begin the aging process, called “senescence,” which goes all the way down to the cellular level.

The cells in our bodies depend on a short snips of DNA, called telomeres, to reproduce. When we are young, the cells in our body also tend to be young, in that they look and act similarly to the first generation of cells we start out with when we were first developing in the womb. As we get older, however, the cells in our body are many hundreds or thousands of generations removed from the original cells, and the strands of code on the end of the DNA—the telomeres—get shorter. If the telomeres are in good shape, as they are in young people, each new generation of cells functions well. When the telomeres get too short, however, each new generation of cell functions and reproduces more poorly, to the point where the cells sometimes can’t reproduce at all.

Defective cells can lead to real problems. If our muscle and bone cells can’t make new cells that function well—because the telomeres have become too short—this makes it more likely that our muscles and bones will be weak. Weak muscles and bones mean a greater risk of falling and a greater risk that we’ll break a major bone. Defective brain cells can lead to coordination and memory problems. Defective immune cells aren’t as able to keep infections and cancers at bay.

It is this last category of senescence, called immunosenescence, which has particular relevance for people with HIV.

How does HIV affect the aging process?
Educators often explain what happens in the bodies of people with HIV as a battle: a war between the virus and immune cells. HIV isn’t unique in this regard, however. The immune system is constantly “at war” with a host of harmful organisms—viruses and bacteria that get into our bodies—and also with our own cells that become defective and start reproducing too quickly—what we call cancer.

Where HIV differs from many other diseases is that in 99 percent of HIV-positive people, the immune system doesn’t control the virus very well. This constant state of battle, where the virus reproduces and the body fights against it, keeps the immune system chronically in high alert, a syndrome called inflammation.

Inflammation isn’t inherently bad—we need it to fight off infections like the flu, to repair damage to body tissues and to ward off the growth of certain cancers—but unchecked inflammation can wreak utter havoc on the body: causing the buildup of heart attack- and stroke-causing plaques in our arteries, feeding the growth of some types of cancer, and burning out our immune systems.

We’ve known since the early years of the epidemic that the immune systems of people with HIV were chronically inflamed, but before the introduction of potent combination antiretroviral (ARV) therapy in the late 1990s, most people with HIV died too young and too quickly for the long-term consequences of this inflammation to be known. Once potent ARVs became available, and people began living much longer, scientists were finally able to study the long-term effects of inflammation in people living with HIV.

In the past decade, numerous studies have yielded some important findings. We know that inflammation is greatly reduced in people who are able to get and keep their viral loads undetectable using ARVs. This is one of the reasons that the Department of Health and Human Services (DHHS) treatment guidelines recommend that people start HIV treatment earlier. Unfortunately, we’ve also learned that an undetectable viral load doesn’t mean that inflammation is blocked completely—it can still be detected, and potentially cause problems, in people who are otherwise responding well to ARVs.

While researchers are concerned with how inflammation directly affects major organs such as the heart, liver and kidneys, they’re also interested in how chronic inflammation affects the immune system itself. The longer a person’s immune system continues to battle HIV—even if ARV therapy is being used—the more likely that person is to experience immunosenescence, also sometimes called “immune exhaustion.” This condition means that immune cells can’t react appropriately when confronted with a new challenge. They also don’t reproduce easily or efficiently. In fact, when scientists look at the immune cells of people with HIV, they find that those cells often have the same degree of immune exhaustion as HIV-negative people who are many decades older.

Are people with HIV aging more rapidly?
As mentioned above, any number of factors can make people more likely to have age-related diseases and conditions at higher rates and younger ages. People with HIV are more likely to have some of these risk factors than HIV-negative people thus leading them to have poorer health as they get older. Researchers have also wondered how or whether HIV—all by itself—is a risk factor for age-related diseases and conditions.

There is no dispute that many of the diseases associated with aging occur at much higher rates in people with HIV and at much younger ages than in people not living with the virus. Here are just a few of those conditions:

Some experts believe that a number of factors besides HIV can significantly contribute to these problems. Consider the following:

  • People with HIV take ARVs, some of which can contribute to bone loss, kidney damage, fat redistribution and elevated cholesterol and triglycerides.
  • People with HIV are far more likely than the general population to be coinfected with either hep B or hep C—or sometimes all three—and these increase the risk of liver cancer, liver failure, kidney disease and diabetes.
  • People with HIV are many times more likely to be chronically infected with human papillomavirus (HPV), which causes cervical and anal cancer as well as cancers of the head, neck and throat.
  • People with HIV are up to three times as likely to smoke tobacco, which is one of the leading causes of heart attacks, strokes, lung cancer and emphysema.
  • People with HIV have rates of mental illness and substance abuse that are many times higher than in people who don’t have HIV, and these illnesses increase the risk of numerous other diseases.
  • HIV can directly infect key tissues in the bone, brain, circulatory system and elsewhere, and it can cause inflammation-related damage to the heart, nervous system, liver and kidneys.

These factors likely play major roles in the increased rates of aging-related diseases and conditions seen in people with HIV. What experts haven’t yet agreed upon is how much HIV infection itself might exacerbate underlying risk factors—via inflammation and immunosenescence—known to contribute to aging-related problems.

Researchers are working to try to understand how quickly inflammation and immunosenescence occur in people with HIV after they become infected. There is evidence that it begins to happen very soon after a person contracts HIV, but that good control of the virus (either because a person naturally controls HIV well or because he or she takes ARV therapy) may slow this process down somewhat.

Experts haven’t yet agreed on the best way to measure inflammation and immunosenescence, and we don’t yet know how much they independently contribute to the aging-related diseases either in HIV-negative people or in people with HIV. Research is ongoing, however, to try and answer these questions. In the meantime, there is much that the average person living with HIV can do to reduce the risk of many age-related diseases and conditions.

Is it possible to slow down the aging process?
We’re a long way from discovering a fountain of youth, but a number of factors are consistently associated with reducing the risk for developing age-related diseases and conditions

Don’t smoke tobacco. Smoking tobacco is one of the most harmful things that people can do to their bodies—and to their chances of living a long and healthy life. Most people know it can cause lung cancer and other lung diseases. Some even know that it can increase the risk for heart attacks and strokes. But it is also associated with numerous other age-related ailments—including bone mineral loss, muscle wasting, problems with memory and concentration—and age-related cancers, such as anal, breast, cervical and prostate cancer. Click here for some tips on quitting smoking.

Minimize alcohol and drug use. Consistent data suggest that moderate alcohol consumption might actually protect the heart and lower blood pressure. However, the American Heart Association recommends that men who drink alcohol should consume no more than two drinks per day and that women should consume no more than one. Studies have found that people who regularly drink more than that are at increased risk of strokes, diabetes, obesity and serious accidents. People with HIV who have liver problems have to take particular care with alcohol.

Data are less clear about how various recreational drugs affect the aging process, though chronic amphetamine (“crystal”) and cocaine use have been implicated in thinking and memory problems, bone mineral loss and heart disease. In addition, excessive use of most drugs is associated with shorter life spans, increased risk of depression and suicide, and other serious health consequences.

Exercise. On average, people who exercise regularly are far healthier in numerous respects than people who don’t exercise. Exercise is good for just about every part of the body. Benefits of regular exercise include reductions in the risk of:

  • Cardiovascular disease, diabetes and metabolic syndrome
  • Age-related cognitive decline
  • Bone-mineral and muscle loss

Exercise also reduces inflammation throughout the body, improves symptoms of depression and anxiety, and hastens recovery when illness strikes. Not everyone is equally able to exercise, and a doctor should sign off on any exercise plan, but there are a number of ways to get moving. Click here for some suggestions.

Eat well. Aside from exercise, diet also helps determine who will live a long and healthy life. Experts are divided on the ideal diet. Some argue against the consumption of almost any fat. Others say that fats (at least healthy fats from nuts and fish) aren’t the problem, but that sugar is. Some argue for a vegetarian way of life, while others say meats are just fine. Fad diets that come and go just confuse matters further. All of this can make it quite difficult to decide on the best diet.

What most reputable diets have in common is watching caloric intake, along with an emphasis on including lots of fruits, vegetables, whole grains and beans, and then enjoying everything else in moderation. Most also stress the importance of eating the healthiest types of fish and limiting meat consumption to the leanest meats, such as from chicken and turkey, whenever possible. When it comes to fats, there is growing consensus that “healthy” fats—for example, from olive oil, nuts and avocados—are actually good for you.

What the most reputable diets also agree on is that too much sugar and too many processed and fried foods are a primary driver of diabetes, cardiovascular disease and a host of health problems in the United States. Switching from an unhealthy to a healthy way of eating is hard for many people—that’s why diets so often fail. For more on nutrition and HIV, click here.

Treat HIV. Current HIV treatment guidelines recommend starting ARV therapy at least as soon as your CD4 count drops below 500. The primary rationale for this advice comes from data showing that untreated HIV, and the resulting high level of inflammation, can greatly increase the risk for cardiovascular disease, liver disease and other conditions. Some experts now recommend treating at even higher CD4 counts for the same reason, especially in those with a high underlying risk for cardiovascular disease, liver disease or other health problems.

Not everyone has the same underlying risks for the kinds of diseases that the panel was most concerned with, however. For instance, people with no family history of heart disease, who have never smoked and who don’t have hepatitis C or B have a low baseline risk for becoming ill with cardiovascular, liver or kidney disease. For such a person, the decision about when to start treatment might be different from that of a person who does have a family history of heart disease, or who smokes or has HCV. In that regard, the guidelines offer some flexibility.

What is clear, however, is that the longer people wait after their CD4s drop below 500, the greater their risk for developing age-related illnesses will likely be. In fact, one of the most potent predictors of a higher risk for the majority of age-related diseases is a CD4 count under 200.

Treat other infections. Current HBV and HIV guidelines recommend that people with both infections should begin HIV therapy (with a backbone of treatments that also fight HBV) as soon as possible. This is because treating HBV early significantly reduces the risk of liver cancer and other liver problems, without significantly increasing the risk of side effects from the medication.

There are a number of highly effective treatments currently approved by the U.S. Food and Drug Administration (FDA) to treat hepatitis C. Many others are being studied in clinical trials or are awaiting FDA approval. For details on these medications, click here. To check out the AASLD-recommended regimens for those who are coinfected with HIV, click here.  (The treatment recommendations are based on your hep C genotype and how well your liver is functioning. If you don’t know your virus genotype or how well your liver is functioning, these are good things to discuss with your doctor.)

Follow disease prevention and screening guidelines Researchers have begun to question whether certain age-related screening guidelines might need to start at a younger age in people with HIV. For instance, some have questioned whether the most popular screening tool to assess heart attack risk, based on data from the long-running Framingham study, should be modified for people with HIV.

Experts also question whether others tools, such as the FRAX score for assessing bone mineral loss, might need to be adjusted for HIV-positive people. In fact, some now recommend that HIV infection alone counts enough as a risk factor that bone screening ought to begin at a younger age, particularly for HIV-positive men, than is typically recommended.

Studies are being conducted to help identify whether current disease screening guidelines for people older than 50 are sufficient for people with HIV. While we wait for the results of those studies, however, it is important to ask your doctor what types of disease prevention and screening guidelines are in place for a person of your age and medical background and to insist on following those guidelines in your own care. The U.S. Preventive Services Task Force produces disease screening and management guidelines may be found here.

Stay socially and mentally connected. Numerous studies have found that people who maintain social connections with their family, friends and colleagues and who engage in activities that they feel add meaning to their lives not only live longer, but also remain healthier than people who are socially isolated and who do not engage in meaningful activities. There are a variety of ways to get connected socially if you aren’t close to family and don’t have many friends. Many local AIDS service organizations (ASOs) have support groups for people with HIV to connect with one another.

Volunteering with a charity that works on causes you believe in, or with a political campaign, can also help you connect socially. Finding local groups of people to exercise with would accomplish two goals: social connection and fitness.

If you are unable to get out of your house easily, or if you live in a rural area without many opportunities meet like-minded folks, it is possible to connect with others online in forums. Check the POZ Forums for topics that interest you, and begin connecting with others today.

Are there experimental treatments to slow aging in people with HIV?
Many research teams are looking at ways to slow the aging process, both in HIV-positive and HIV-negative individuals. So far there are no proven methods for actually reversing aging. Here’s a sample of some of the more promising examples of research to slow aging, and a few examples of those that are more risky and require caution.

Reducing inflammation. As already explained, a chronically over-active immune system is harmful in many ways. Not only can it directly damage our blood vessels and vital organs, but it can also hasten the turnover of our immune cells, leading to immunosenescence.

A variety of compounds—some currently available for other conditions, and others experimental—are being tried in people with HIV to calm the immune system. Available drugs under study include aspirin, HMG-CoA reductase inhibitors (commonly called “statins” and used to lower cholesterol), the entry inhibitor Selzentry (maraviroc) and drugs that are typically used to treat malaria. Experimental drugs include those that have been designed to treat arthritis and other inflammatory diseases.

Lengthening and repairing telomeres. If damaged or shortened telomeres lead to immune exhaustion, then we should be striving to repair or lengthen them, right? The best answer to that question is yes, but only if we can do it safely. There’s a good reason that we’ve evolved in such a way that our telomeres break down if a cell reproduces too much: cells that can’t stop replicating turn cancerous. Drugs that stimulate the enzyme telomerase, which helps maintain telomeres, could hypothetically increase the risk for certain types of cancers. There are some promising drugs in early animal studies, but a lot of research will be required before they are ready for humans.

Riskier alternatives. One of the most written-about methods for lengthening the life spans of animals and (hopefully) people is extreme calorie restriction. Studies have progressed from insects to small mammals, and thus far it does seem that a diet containing about half of the “ideal” amount of calories for an individual animal can significantly lengthen that animal’s life span and increase its health and vitality during those extra years of life. We’re a long way from being able to study this method in humans, however, and most researchers and health care providers would not recommend that people with HIV initiate a super-low calorie diet.

Another treatment common in “longevity” clinics around the United States is the use of hormones, such as testosterone, human growth hormone and anabolic steroids. While each of these has been approved to treat the loss of fat and muscle common in people with advanced HIV disease (wasting), none is approved to slow or reverse the aging process and all come with side effects that can actually increase some age-related conditions, such as cardiovascular disease, liver problems and diabetes.

Potent combination ARV therapy is not perfect—all of the available treatments can cause some side effects; the drugs must currently be taken with almost perfect regularity and for the rest of one’s life; and all can stop working. That said, many experts now agree that a person who starts ARVs early has a great shot at living a nearly normal life span.

Though rates of age-related diseases are much higher in people with HIV, this doesn’t mean that everyone who is HIV positive will have multiple illnesses by the time they reach their 50s. In fact, the actual rates of some age-related diseases remain well under 10 percent in people with HIV. What isn’t yet clear is who will be most at risk of which diseases, how vigilant we need to be in screening for various diseases and whether treatment for any diseases will need to be different in people with HIV.

Researchers are actively working on these issues. In the meantime, the best available methods for preventing age-related physical and mental decline are the old standbys: dieting, exercising, maintaining social connections and abstaining from harmful behaviors.

Share this

What is “Successful Ageing” for People Living with HIV? 26/8/2017

Published by AIDSMAP

When Canadian researchers asked HIV-positive people over the age of 50 how they would define “successful ageing”, six key themes emerged – accepting limitations, staying positive, maintaining social support, taking responsibility, living a healthy lifestyle, and engaging in meaningful activities.

Writing in the International Journal of STD & AIDS, Patricia Solomon and colleagues note the emphasis on individual control. Clinicians and service providers should work with people living with HIV to understand their values and aspirations and help them identify their personal goals, the researchers say.

In relation to the general population, there are numerous definitions and models of successful ageing. For example, some authors have said it has three components: avoidance of disease, maintenance of cognitive and physical function, and social engagement. However, the concerns and priorities of people with HIV may be different. The experience of stigma and discrimination may mean that social isolation is a particular concern. Having already dealt with health issues over many years, people with HIV have different feelings about their physical health.

For a qualitative study on HIV, ageing and disability, researchers in Ontario, Canada conducted a series of in-depth interviews with older adults living with HIV. Each person was interviewed on four separate occasions, over an 18 month period.

The 24 interviewees were aged between 50 and 73, with a mean age of 57. Fourteen were male and 10 were female. The length of time since their HIV diagnoses ranged from 6 to 30 years, with a mean of 18 years. While three-quarters had an undetectable viral load, three-quarters also reported that they experienced at least six “bothersome” symptoms. Only one in five was employed and incomes tended to be low.

At the end of the fourth interview, participants were asked how they would define successful ageing and to reflect on whether they considered themselves to be ageing successfully. The six key themes that emerged are described below.

Accepting limitations

The interviewees talked about the importance of coming to terms with the realities of ageing, of not expecting to be able to do as much as when they were younger and of setting limits. When one man was asked if he considered himself to be ageing successfully, he responded:

“I’m in a happy place. I could be happier but I mean I’m sort of accepting. I’m accepting what my life is.”

Staying positive

While many participants talked about being positive and happy, they defined this in a variety of ways – avoiding depression, having dreams and aspirations, and maintaining a sense of humour.

“Having a sunny disposition on life, don’t let things drive you down, don’t sweat the small stuff. That’s a big one. Don’t sweat the small stuff.”

Maintaining social support

Connectedness with others was recognised as an essential element of successful ageing. This could be with friends, family, other people with HIV, and other social networks. Interviewees recognised the practical (as well as emotional) support that they sometimes needed.

“I’ve learned, this was a hard one for me, I’ve learned to ask for help.”

Taking responsibility

Being involved in managing one’s own healthcare was important to many participants.

“We’re dealing with HIV and it’s not going to go away, so we have to be self-reliant and we have to be good managers of our health and our psyche so that we don’t fall into the doldrums.”

Healthy lifestyle

Many interviewees recognised the importance of a healthy lifestyle. They spoke about eating healthily, abstaining from drugs and smoking, getting rest and sleeping well, minimising stress and regular exercise.

“If you want to live a full and long, healthy life, you can… Adherence to your medications is paramount, but coupled with that is the changes you will make in your personal life.”

Engaging in meaningful activities

A key element was the ability of people to take part in activities that were meaningful to them. These could be maintaining existing activities or finding new ones, including taking care of oneself, taking care of other people, volunteering or employment.

“Everyday I just keep going, I’m not going to stop working. And that helps the mind and the body to keep going.”


While academic and professional models of successful ageing tend to emphasise physical health and the absence of disease, the researchers say that their interviewees were less concerned about this – only one interviewee mentioned living to an old age – and were more concerned about the psychological and social aspects of getting older.

“Our participants appeared to focus on components of successful aging that emphasised individual control,” the researchers say. “From a clinical perspective this highlights the importance of working with PLWH [people living with HIV] to understand their values and aspirations, and create patient-centered goals that are meaningful to the individual.”

Share this

Drinking while HIV+. 25/6/2017

Published by NEWS24

Alcohol not only increases the likelihood of risky sexual behaviour, it also affects HIV treatment adherence.

Booze and HIV do not mix, in more ways than we think.

During the SA Aids Conference in Durban last week, Dr Paul Shuper, an expert scientist in the field of alcohol and HIV, said that “when you consume alcohol, you might forget to take your medication or may not even have it with you”.

“There is evidence from a number of studies that link alcohol to non-adherence to antiretroviral drugs (ARVs). What they found was that alcohol use was the strongest predictor of non-adherence, and ­another study showed that, in binge drinkers, the likelihood of non-adherence increased ninefold,” he said.

But Shuper also dispelled the myth that ARVs should not be taken while drinking.

“We need to change perceptions about anti­retroviral therapy and alcohol toxicity. We need to work with healthcare professionals to ensure nonjudgemental attitudes when it comes to drinking and taking ARVs,” he said.

“Instead, we need to create an environment where people can come and talk about their alcohol use, and providers can help them take their medication even when drinking.”

So while alcohol increases the likelihood of engaging in risky sexual behaviour and getting infected with HIV, it also affects adherence to HIV treatment, which then negatively affects the spread of HIV. Drinking alcohol is the main driver of risky sexual ­behaviour and there are many theories around ­alcohol’s causal role in sexual risk-taking.

Limited ­cognitive capacity

However, it’s not just alcohol that leads to unprotected sex – the person’s personality traits and their sexual expectations after drinking also contribute.

“There are other arguments, such as that it might not be alcohol that causes risky behaviour, but the ­individual’s personality. For example, as a risky ­person, I might like to go out and drink a lot; on the other hand, I may like to go out and meet partners and have sex without a condom,” Shuper said.

“It might look like alcohol is causing risky ­behaviour, but, in fact, both of those things are ­stemming from me as a risky person.

“There are also expectations surrounding alcohol use. Some people believe that when they consume ­alcohol, they will engage in risky sexual behaviours and those thoughts end up contributing to this,” he explained.

Shuper and his colleagues tested this theory on a group of 140 men who have sex with men, who were ­recruited from a clinic specialising in HIV care in ­Toronto, Canada, and they looked at the ­theory of ­alcohol, sexual arousal, personality traits and in-the-moment risk factors in sexual decision making.

They then took the participants to a specialised laboratory that resembled a bar. To ensure that it met “bar standards”, researchers poured 30ml of vodka into a shallow container out of sight behind the bar about 20 minutes before the participants ­arrived. This provided a strong alcohol olfactory ­cue that could be sensed immediately upon entering the bar.

Half of the participants were given real alcohol, a quarter got placebo alcohol, which smells and tastes like alcohol, but isn’t, and the other quarter were just given water to drink. Shuper said what was surprising was that the group that received placebo alcohol ­believed that they were drunk after the experiment.

Afterwards, participants were presented with hypothetical scenarios of imaginary partners and were asked if they would engage in condomless sex with these partners. Many indicated that they would.

“The theory behind this suggests that, when we consume alcohol, it’s not that we become completely uninhibited, but rather that our cognitive capacity ­becomes very constrained. Because of this, we focus on the cues that drive us towards risky behaviour – being sexually aroused at the time and being presented with an attractive sexual encounter,” Shuper said.

“We focus on those aspects and, with limited ­cognitive capacity, we disregard the prospects of ­becoming infected with HIV or passing on the virus.”


Share this

HIV Life Expectancy Now Nearly The Same as General Population. 11/5/2017

Published by PINKNEWS

Young people with HIV now have a practically normal life expectancy, new research has revealed.

The expected age at death of a 20-year-old patient starting antiretroviral therapy (ART) between 2008 and 2010 before the disease had fully taken hold was 78 years old.

Life expectancy in the US is 78.9 in the US and 80.1 in the UK.


The 17-year government-funded study published today in The Lancet was conducted on more than 88,000 people over the age of 16.

It showed that between 1996 and 2010, life expectancy in 20-year-old patients beginning ART increased by about 9 years in women and 10 years in men.

The increase in life expectancy was down to rapid improvements made in treatment, the study’s authors said, commenting that HIV healthcare had “improved substantially in the past two decades”.

Prof Helen Stokes-Lampard, who chairs the Royal College of GPs, told the BBC: “It’s a tremendous medical achievement that an infection that once had such a terrible prognosis is now so manageable, and that patients with HIV are living significantly longer.

“We hope the results of this study go a long way to finally removing any remaining stigma associated with HIV,” she continued.

This, in turn, would mean “ensuring that patients with HIV can live long and healthy lives without experiencing difficulties in gaining employment and – in countries where it is necessary – obtaining medical insurance.”

She added that steps were being taken to increase appropriate HIV testing by GPs.

The study followed news last week that scientists have cured living animals of HIV for the first time.

Starting treatment early is crucial to increasing your life expectancy, emphasised the experts behind the study, known as Bristol University’s Antiretroviral Therapy Cohort Collaboration.

ART involves a combination of three or more drugs to block the usual advance of HIV.

And the study’s authors said the latest developments in the field meant newer drugs have fewer side effects and are better at preventing the virus from spreading.

The virus is also less likely to build up a resistance to these drugs.

And improved screening and prevention programmes, in conjunction with more awareness and treatment of the health issues caused by HIV, have helped as well.

Around one in eight people are still unaware that they have the virus, a deficit which doctors say must be fixed to ensure this crucial treatment is carried out.

Mental health issues are prominent among people with HIV, with a study last month finding that HIV-positive men are twice as likely to die by suicide than the general population.

More than 100,000 people are living with HIV in Britain.

There have been ongoing legal battles around the funding of PrEP, a drug that can reduce the risk of being infected with HIV by up to 86% if taken daily.

It has been endorsed by the World Health Organisation and Centers for Disease Control and Prevention for at-risk men who have sex with men (MSM).                         

Share this

Teaching Happiness to Men with HIV Boosts Their Health. 17/4/2017


When individuals recently diagnosed with HIV were coached to practice skills to help them experience positive emotions, the result was less HIV in their blood and lower antidepressant use, reports a new Northwestern Medicine study.

“Even in the midst of this stressful experience of testing positive for HIV, coaching people to feel happy, calm and satisfied — what we call positive affect — appears to influence important health outcomes,” said lead author Judith Moskowitz, professor of medical social sciences and director of research at the Osher Center for Integrative Medicine at Northwestern University Feinberg School of Medicine.

This is believed to be the first test of a positive emotion intervention in people newly diagnosed with HIV. Based on the study results, the intervention is promising for people in the initial stages of adjustment to any serious chronic illness.  

The paper was published recently in the Journal of Consulting and Clinical Psychology.

The HIV study is part of a larger body of positive affect research being conducted by Moskowitz. She also is studying the health effects of teaching the skills to individuals with type 2 diabetes, women with metastatic breast cancer and caregivers of dementia patients.

For the HIV study, which was based in San Francisco, 80 participants (primarily men) were taught a set of eight skills over five weekly sessions to help them experience more positive emotions. Another 79 participants were in the control group. 

Moskowitz and colleagues designed the tools based on evidence showing these particular skills increase positive emotions. Some of the skills included: 

  1. Recognizing a positive event each day
  2. Savoring that positive event and logging it in a journal or telling someone about it
  3. Starting a daily gratitude journal
  4. Listing a personal strength each day and noting how you used this strength recently
  5. Setting an attainable goal each day and noting your progress
  6. Reporting a relatively minor stressor each day, then listing ways in which the event can be positively reappraised. This can lead to increased positive affect in the face of stress
  7. Understanding small acts of kindness can have a big impact on positive emotion and practicing a small act of kindness each day
  8. Practicing mindfulness with a daily 10-minute breathing exercise, concentrating on the breath

Fifteen months after the interventions, 91 percent of the intervention group had a suppressed viral load compared to 76 percent of the control group. In addition to the potential benefit of a lower viral load on the infected person, there may be public health benefits.

“From a public health perspective, that is potentially huge for prevention of HIV,” Moskowitz said. “HIV is less likely to be transmitted with a low viral load. To have a difference like that is amazing.”

The reduced viral load could be because of a stronger immune system, Moskowitz said. Observational studies in people living with HIV have shown positive emotion is related to a higher CD4 count (an indicator of less HIV-related damage to the immune system).  Or, the reduced viral load may be the result of participants’ better adherence to their antiretroviral drug therapy, which generally leads to a suppressed or undetectable viral load, Moskowitz said.

The positive emotion intervention also improved mental health. At baseline, about 17 percent of the control group and intervention group reported being on antidepressants.  Fifteen month later, the intervention group was still at 17 percent but the control group’s antidepressant use rose to 35 percent.

“The group that learned coping skills did not increase antidepressant use, whereas overall the control group increased its antidepressant use,” Moskowitz said. In addition, the intervention group was significantly less likely to have repeating, intrusive thoughts about HIV.


Share this

French Study Reveals the Growing Complexity of Medical Needs as People with HIV Age. 25/10/2016

Published by AIDSMAP

The complexity of the needs of people living with HIV will continue to increase as the population ages, and clinicians need to go beyond thinking about co-morbidities to consider multi-morbidities – clusters of medical conditions which complicate one another – when caring for these people, Dr Edouard Battegay of University Hospital Zurich told the International Congress on Drug Therapy in HIV Infection (HIV Glasgow) on Tuesday.

Following analysis of multi-morbidity in the general population, University of Zurich researchers found that medical conditions tended to cluster into eight groups, and that individuals tended to fall into one of these clusters. For example, they found a strong relationship between dementia, depression and hip fracture, but much less frequent overlap between coronary heart disease and hip fracture and depression. Instead, people suffering from cardiovascular problems tended also to suffer frequently from thyroid dysfunction and chronic obstructive pulmonary disease.

These patterns of clustering indicate which groups of specialists might need to work together more frequently, and who needs to be involved in the care of people with HIV.

Dr Battegay suggested that among people living with HIV, a number of clusters of multi-morbidity present with greater frequency, such as HIV infection, depression and pain, or HIV, depression and non-adherence. HIV and hypertension overlap with cardiovascular disease, and may also overlap with pain. Further research is needed to examine these clusters of multiple morbidity, so as to help in the development of algorithms for the management of multiple morbidity, such as those recently issued by the European AIDS Clinical Society.

Research from France also presented at the conference showed that by the time people living with HIV reach middle age, a high proportion already have complex medical problems requiring multidisciplinary management. The study found that just over half were at high risk for serious kidney disease, 46% were at high or very high risk of a cardiovascular event in the next five years and 56% had hypertension.

Investigators from the Aquitaine regional cohort wanted to establish a clear understanding of the evolving medical needs of HIV-positive patients in the modern antiretroviral therapy era. They therefore analysed cross-sectional data gathered from patients enrolled in the prospective ANRS CO3 Aquitaine cohort to see how the spectrum of health problems observed in HIV-positive patients changed between 2004 and 2014.

A total of 2138 patients had study visits in both 2004 and 2014. Most (71%) were male, 40% were men who have sex with men and the median age in 2014 was 52 years. Sixty-two per cent of the cohort was over 50 years of age in 2014.

HIV markers improved over the ten years of the study. The proportion of patients with an undetectable viral load increased from 51% in 2004 to 91% in 2014 (p < 0.0001). This was accompanied by a significant increase in the proportion of patients with a CD4 cell count above 500 cells/mm3, from 44% in 2004 to 72% in 2014.

However, there was a significant increase in the proportion of patients diagnosed with age-related co-morbidities and taking therapy for these ailments.

Prevalence of chronic kidney disease increased from 4% to 18%; fractures from 1% to 7%; cardiovascular disease events from 4% to 14%; use of blood thinning agents from 1% to 8%; therapy with aspirin from 1% to 8%; hypertension from 19% to 56%; diabetes from 8% to 19%; use of anti-diabetic therapy from 2% to 6%; prevalence of elevated lipids from 14% to 54% and use of statins from 9% to 24% (all comparisons, p < 0.0001).

Of particular concern, the proportion of patients with a Framingham High Risk score (5-10%) for cardiovascular disease increased from 13.1% to 26.5%, while the proportion with a Framingham score above 10%, indicating a risk of one in ten or more of having a cardiovascular event – either stroke or heart attack – in the next five years had jumped from 5.3% to 19.9%. In other words, one in five of the cohort are now at very high risk of a cardiovascular event, compared to one in twenty ten years ago.

Similarly, the proportion of patients with the highest risk of kidney disease, as measured on the D:A:D renal risk score had risen from 29.9% in 2004 to 50.5% in 2014, indicating the importance of selecting antiretroviral regimens that minimise the risk of further loss of kidney function.

Share this

AIDS2016: HIV and Hypertension a Growing Problem. 22/7/2016

Published by HST

Three-quarters of people on antiretroviral treatment at a clinic in Khayelitsha were also being treated for hypertension. Yet there is not enough information about how HIV and common non-communicable diseases (NCDs) such as hypertension and diabetes interact, or how medicines to treat them interact.

This is according to Dr Tolu Oni, from the University of Cape Town, who is investigating the “collision” between HIV and NCDs.

“As people living with HIV are living longer, we are facing a new challenge. NCDs pose a new threat to people with HIV, but there are many unanswered questions,” Oni said.

These questions include the extent of NCD co-infection, medicine interactions and how to co-diagnose and co-treat these.

Aside from having the largest HIV population in the world, South Africa is the fattest nation on the continent.

Up to 70% of South African women and a third of men are overweight or obese, while a quarter of girls and one in five boys between 2 and 14 years are overweight or obese.

Obesity is associated with type 2 diabetes, heart disease, stroke, hypertension, joint pain and certain cancers.

“Some NCDs are related to HIV infection itself, and to the side effects of some of the medicines used to treat HIV infection,” according to UNAids.

“Several opportunistic illnesses associated with HIV are NCDs in their own right, such as HIV-associated lymphoma and cervical cancer.”

Australian Professor And-rew Grulich reported that “the pattern of cancer and HIV is beginning to collide” as the population of people with HIV ages. “There is an exponential increase in cancer as a person ages,” said Grulich.

A skin cancer called Kaposi’s Sarcoma was common in people with low immunity, but could be treated once a person was on ARVs. However, lymphoma was the most common cancer in people with HIV with mildly suppressed immunity, he said.

Californian epidemiologist Dr Melissa Frasco reported that two classes of ARVs were associated with an increase in diabetes, while “untreated HIV could lead to metabolic syndrome” (including obesity), which put patients at risk of heart attacks and strokes.

Share this

A Look at the Graying of HIV. 4/6/2016


Jack Cox has been living with HIV for the last 31 years. He is part of the first generational cohort to grow old with the disease, thanks to advances in drug therapies.

Survivors from the U.S. AIDS epidemic of the 1980s and '90s are accustomed to being told they dodged a bullet. They know they are fortunate to be alive, all these decades later.

But on this 35th anniversary of the first public scientific notice of a rare and mysterious pneumonia afflicting five young gay men in Los Angeles, those who made it through the early years of panic, confusion and grief say it's not as if they can ever feel the disease is all in the past.

It's more like they are veterans of a war, they say, living with that bullet still inside them.

Today, more than half of the 1.25 million Americans infected by the human immune deficiency virus are 50 and older; in just four years, that share should reach 70 percent. Remarkably, 18 percent of all newly diagnosed cases occur in this age group. As the longevity boom collides with a resurgence of HIV diagnoses nationwide, scientists are just now learning how this persistent, incurable virus — along with the powerful drugs that keep it at bay — takes a toll on the body that makes natural aging look like a gift.

“A 60-year-old with HIV,” says Scott George, director of advancement for the Community AIDS Network in Sarasota, “really has the body of a 75-year-old. And it's devastating.”

If caught in time and treated appropriately, the retrovirus that could develop into a fatal case of acquired immune deficiency syndrome rarely gets that far anymore. But like other chronic illnesses and the pharmaceutical regimens they entail, HIV accelerates the aging process. Scientists have only just started comparing notes on the burden that years of infection and medication can place on an elder.

“Treating HIV disease does not necessarily restore health,” says Steven Deeks of the AIDS Research Institute at the University of California San Francisco, adding that health experts see “an excess amount” of the chronic conditions associated with aging, “particularly cardiovascular disease and cancer.”

These discoveries come at a time when the rate of new HIV infections is once again on the rise in Florida, with 380 new cases reported in Sarasota and Manatee counties from 2010 to 2014. In the last documented year, the rate for Manatee County nearly doubled. Physicians and public health workers worry that, because an HIV diagnosis is no longer a virtual death sentence, people in at-risk populations don't fully consider the downsides of unsafe sex and drug use.

It is becoming clear, Deeks says, that the downsides include more than the lifelong necessity and expense of medication and monitoring of white blood cell counts, to keep a compromised immune system functional. Being HIV-positive also means an earlier, vastly more challenging old age.

“This has not gone unnoticed in the community,” he points out. “The classic comment that patients make is, 'Doc, you're always obsessing about my numbers. But I just don't feel right; I'm not as healthy as my father was at this age.'”

A lifelong infection

Jack Cox has lived with the virus for 31 years. At 76, the Sarasota resident is part of the first generational cohort to grow old with HIV, and he would not recommend it to anyone.

“You still have the flu all the time,” he says with a wry smile. “I have to work really hard to stay positive, because that part of me that was life-affirming became life-threatening. I ache a lot. I have to process myself into an OK place where I don't have to fight every minute.”

A year ago, researchers at the University of California Los Angeles reported that people with HIV experience age-related changes in their DNA more than 14 years sooner than healthy individuals. This in turn boosts their risk for earlier onset of frailty, certain cancers, osteoporosis, liver and kidney damage, cardiovascular disease and diabetes.

“HIV is a lifelong infection,” Beth Jamieson, the study's lead author, noted at a spring scientific conference in New York that targeted the complex interplay between chronic diseases and aging. “Individuals have high levels of virus coming at their T-cells all the time.”

“T-cells” — a common term during the AIDS crisis — are the foot soldiers of the human immune system, and HIV destroys them. A normal T-cell count between 600 and 1,500 is a sign of health, and a count below 200 triggers a diagnosis of AIDS. Nowadays, someone who tests positive for HIV is immediately prescribed anti-retroviral therapy medications, known as ART, and can avoid progressing to full-blown AIDS.

“A person who is adherent, motivated and has access to therapy can pretty much get the virus under control,” says Deeks. An HIV researcher and physician since 1993, he also spoke at the New York Geroscience Summit.

But, he added, “anti-retroviral drugs are not benign, and only recently have we begun to discover the damage they can do.”

An estimated 126,100 Floridians were living with HIV in 2014, a figure that includes almost 13 percent who are unaware of the virus inside them. The concentration is highest in the Miami region, but no part of the state is untouched. While the highest infection rate was among 20- to 29-year-olds, 23 percent of new HIV cases were among people 50 and older.

Most remarkably, this oldest sector had the highest share of new AIDS cases — 33 percent — suggesting that they are less likely to be tested for the virus until it's too late to prevent the disease.

“These undiagnosed seniors are really scary to me,” says George of the Community AIDS Network, who relates cautionary tales of promiscuous older men and their unsuspecting multiple partners, male and female. “These people have no idea they're infected with anything because they're not screened for these things. And they die earlier than they have to, because they're fighting a virus in their body that they don't know is there.”

'Sort of important'

Jack Cox remembers a time, in the early 1980s in San Francisco, when the host of things people didn't know about AIDS generated a lot of denial.

Even after the virus was identified and a test became available, he didn't line up for it right away. He felt fine, and at 44 he believed he was too old to contract the disease.

“All of that was just emerging; we didn't even have a name at that point: 'GRID,' 'the gay cancer,'” he recalls. “In those days they were not being clear about what the transmission route was; it might be related to poppers” — a club drug. “And it was all younger men, so I didn't have to worry about that. It was to my advantage to think that way; I didn't have to be responsible. It was becoming more clear, but in your personal economics, sex is sort of important.”

As the AIDS epidemic spread, Cox left a corporate job at American Express and moved to Portland, Oregon. After his partner fell ill, he tested positive for the virus. But he was one of the fortunate few who remained symptom-free.

“At that point we were having really black messages from physicians. It was almost imperative that you die, and it added to another part of what's common in gay culture: a kind of drama, a grim drama,” Cox says. “But my training was in social theory. I said the only way I'm going to be able to deal with this is to create a counterbelief that I don't have to die.”

Cox embarked on his own therapeutic regimen: Chinese medicine and a network of loving friends. It took 11 years for his T-cell count to fall below the diagnostic threshold of 200. By this time, 1996, he had avoided the toxic doses of early experimental medications. Those who survived those crude blasts of chemotherapy in the early 1990s are still feeling their effects, Deeks says.

“There are a lot of similarities between chronic HIV and people who survive cancer,” he explains. “You get a constellation of stuff that tends to be more than additive. When people get into their 60s, 70s and 80s, it creates a challenging set of obstacles that add up to unhealthy aging.”

Deeks and other researchers say that the doctors who treat HIV — mostly epidemiologists who specialize in infectious diseases — will need to get up to speed on geriatrics and preventive medicine as their patients age. Cox, who has endured bouts of depression and heart disease, adds that emotional and spiritual support are also important. Every day, before swallowing the many pills he needs to stay alive, he arranges them in a circle, as a sort of ceremonial ritual.

“Acupuncture was weird: It was 'woo-woo' to me, but it worked,” Cox says. “The pain went away and the angst went away. So I thought, not everything that I ever believed is true, and I need to learn some new stuff. I believed that I had to feel confident with this disease: You take a positive posture toward it and you don't let it control you.”

Cox has a gentle way of talking, as someone who spent his life in the Western states before moving to Sarasota a year ago to live with his son. A longtime organizer in causes to combat poverty and the Vietnam War, he moved naturally into working with others to raise awareness and gather information on HIV, and he gave years to the effort. Now he volunteers at Bethesda House, a drop-in center for people with the virus. When he speaks about his personal history, his mild gaze settles on a distant point, as if he is seeing things that others cannot.

At a 1998 Project Inform meeting in San Francisco where he learned that “a bunch of us would live a long time,” Cox got his first real inkling that old age would be a possibility for him. Participants were among the first to learn that the latest mixture of drug therapies actually worked, and people with the disease no longer had to die.

“I cried when I heard that, because that was what I had been thinking,” he says simply.

“It was a door that was open,” he adds, then smiles. “I was sort of disappointed that it was going to be medicine that made it happen, though: The economics of pharma are scary.”

'Business is good'

The financial burden of fighting the virus is enormous, especially for survivors who abandoned or switched careers because of their diagnosis. According to the latest research, it costs more than $23,000 per year to keep the average HIV-positive American's immune system in working order.

This is one reason why the Community AIDS Network's George is so frustrated when he meets prospective donors who say, “But I thought the disease has been cured.”

It is also the reason behind CAN's phenomenal growth spurt. The nonprofit education and treatment center, founded in 1991, has gone from 23 to 73 employees in the last 18 months and is expanding its headquarters near Ed Smith Stadium.

It started, George says, when the organization's financial officer — who has since retired — discovered a fairly obscure federal program that allows a nonprofit clinic to buy drugs from the manufacturers at cost. This saved CAN from going under, and when the word spread, other Florida clinics with fragile finances asked the Sarasota group to take them over. The result is an HIV support network that now stretches from Miami to Jacksonville.

While there is agreement that new cases of the virus are on the rise in Florida, controversy persists over the actual extent. The Department of Health has taken heat for revising its 2014 numbers downward, giving this state the third-highest new infection rate in the country instead of the first. In April, the department created a new “HIV Data Center” on its website, floridahealth.gov, to explain its methodology, and demonstrate its “commitment to treating and preventing HIV in Florida.” Totals for 2015 are due out soon.

George says each community that CAN serves requires a different response.

“We're starting in Miami to give out free bus passes,” he says. “We're opening a storefront in Palmetto in about a month. It will be a testing center and education center. Business is good, but that's not a good thing. We now have well over 6,000 clients, close to 1,000 in Sarasota.”

The graying of HIV is challenging the skills of CAN's clinicians and caseworkers, he adds, and the pharmaceutical industry is not responding quickly enough.

“When you've had the virus for 20 or 30 years and you've been on all these medications, there are very few medications you haven't grown resistant to,” he says. “Drug companies have nothing in the pipeline. As the virus mutates, we have nothing to take care of what's mutating.”

George recently formed a support group for HIV-positive men, to complement the network's long-standing group for women. Most of the 20 or so men who attend are over 50, he says, but even those who are openly gay prefer to keep their health status private.

“You can't have a normal life; you live with this thing in the back of your head, no matter what happens,” he says. “It's a horrible secret to hide. People will judge you. Stigma is one of the biggest things.”

Don, a 60-year-old Sarasotan, says he doesn't tell most people about his positive status. But he does talk to at-risk groups about testing and prevention, because he wants them to know that living with HIV is not a picnic.

“The drugs are horrific; they're powerful,” he says. “They have many side effects: kidney stones, rashes. I had Kaposi's sarcoma and it affected my lungs. It's hard for me to breathe sometimes.”

But Cox, who came out as gay in 1970 along with two other men at Montana State University, feels no need for secrecy about his years of experience with HIV.

“I'm different,” he says with a shrug. “I'm gay, so I grew up different. And there's a whole bunch of people in Sarasota who are positive as long as me and thriving — that's pretty unusual.


“But I have been lethal, and I haven't recovered from that,” he adds reflectively. “Not that I killed anybody with it. But I stopped being a creator and became a killer, in some way, during that era.”

Share this

Improving The Health Of Older Adults Living With HIV. 26/5/2016

Published by LGBTSR

More than three decades after the onslaught of the AIDS crisis, many long-term survivors are now entering their senior years. Due in large part to improvements in treatment and care, half of people living with HIV in the United States today are age 50 and over. The fact that HIV-positive people can now expect to live long, full lives is wonderful, but with longer life comes the challenges of aging. The National Center for Innovation in HIV Care, a project of The Fenway Institute, has released Strategies to Improve the Health of Older Adults Living With HIV, a brief exploring the unique issues that older HIV-positive adults may face and offers resources for health care providers and AIDS service providers to address these challenges.


“Today, half of PLWH in the U.S. are age 50 or older,” said Sean Cahill, Director of Curriculum and Policy at the National Center for Innovation in HIV Care. “In this issue brief, we’ve outlined five strategies AIDS service providers and health care providers can take to improve the health of older people living with HIV (PLWH). We’ve also highlight resources that can help people with HIV live happier, healthier lives.”

The five key steps outlined in this brief include training staff to provider affirming and culturally competent care for older adults living with HIV; screening for comorbidities, including mental health issues; addressing substance use, including tobacco use; promoting sexual health and HIV/STI prevention with older adults; and strengthening social support networks.

“Older PLWH exhibit a great deal of resiliency and strength,” the brief notes. “In fact, many ASOs and government HIV prevention and care programs would not exist were it not for the vision and leadership many older PLWH exhibited in the early years of the AIDS epidemic. Still, older PLWH require core medical care services that address comorbid conditions in addition to HIV, and management of the many medications they may be taking in addition to antiretroviral medications. They may also need services, such as those funded by the Ryan White HIV/AIDS Program (RWHAP), to remain in continuous care and treatment adherent.”

Reducing the isolation often felt by both older adults and PLWH is absolutely crucial to ensuring that an aging HIV-positive population remains healthy both physically and emotionally. Many seniors who survived the dark days of the 1980s and early 1990s lost huge portions of their support networks – friends, partners, family – to AIDS. Today, this population may be hesitant to enter new social situations due to fear of rejection or stigma based on their diagnosis and/or sexuality.

“Group activities, either held within a health care organization or conducted by a partner site, could increase this population’s access to social support,” the brief suggests. “Topics – such as dating and being sexually active while living with HIV, medication adherence, dealing with stigma (from family, friends, coworkers, and health care professionals), and navigating insurance issues – can provide clients with more information on pertinent issues and create a space where individuals can connect with those who are facing similar difficulties.”


The National Center for Innovation in HIV Care provides free training and technical assistance to Ryan White-funded AIDS service organizations (ASOs) and community-based organizations (CBOs) to help them navigate the changing health care landscape. The Center helps organizations develop strategies to improve operational effectiveness, and implement best practices to optimize outcomes along the continuum of HIV care.

Share this

Depression and HIV: The Search for Solutions in Sub-Saharan Africa. 10/5/2016


Many people with HIV worldwide suffer from some form of mental health problem. Although antiretroviral therapy has drastically reduced HIV-related death and disability, reports of the psychiatric repercussions of HIV are on the increase.

In high-income countries, HIV-related depression – the most common mental health problem in HIV-positive people – was recognised early in the AIDS epidemic as a factor that affects treatment outcomes. Yet it is only recently that the issue has drawn attention in sub-Saharan Africa, where research has found that one in three people living with HIV suffers from depression.

Addressing co-occuring mental health problems is a necessary step in controlling the HIV epidemic. But mental health care is not yet part of the HIV care package in the region.

There are efforts to change this. Our research shows how group psychotherapy interventions that give HIV-positive people emotional and social support, as well as positive coping and income-generating skills, can make a difference.

The link between mental health and HIV

There are biological, psychological and social factors that can cause mental health problems in HIV-positive people.

Depression is the natural grief response to being diagnosed with a terminal illness and to the chronic disability that may arise from it. It can also be linked to the stigma and discrimination associated with the illness. And new psychiatric symptoms and syndromes may occur as the virus affects the brain, or because of opportunistic diseases or treatment side-effects.

Mental health issues can, in turn, influence treatment outcomes. Co-morbid depression may affect motivation to seek HIV treatment or adhere to antiretroviral therapy.

It is also linked to behaviour that may facilitate HIV transmission. People commonly internalise negative stereotypes, expecting discrimination and devaluing themselves. This can interfere with their ability to choose sexual partners and negotiate safer sexual behaviour.

Depression is also associated with reduced coping capacity, poor HIV-related disease prognosis, diminished quality of life, greater social burden, increased health-care costs and higher mortality.

Our research focused on rural primary care settings in Uganda where we developed a group support psychotherapy model to treat depression. Group support psychotherapy treats depression by providing emotional and social support, and teaching positive coping and income-generating skills.

HIV-positive people suffering from depression met in eight weekly, gender-specific sessions. They were provided with information about depression and HIV. They were guided to share personal problems and taught problem-solving and coping skills. These included how to deal with anxiety and unhelpful ways of thinking, and basic livelihood skills.

High level of engagement

Unlike previous studies of group psychotherapy for depression in sub-Saharan Africa, the participants in our group support psychotherapy sessions were eager to engage in the process. More than 80% attended six or more sessions. Given the stigma attached to HIV and mental illness, this was surprising.

There are three possible explanations for the programme’s success.

First, the target community was involved in developing the model. Group support psychotherapy had also been piloted prior to the study and word had spread in the community about its benefits.

Second, trained mental health workers created a safe environment in which the participants could experience the therapeutic processes of group therapy. For example, facilitators reported that all participants had powerful cathartic experiences. Such catharsis has been shown to result in immediate and long-lasting change.

As sessions progressed, group members also began to provide feedback and support each other, during therapy and later, in their livelihood groups. The opportunity to help others, or altruism, has been shown to restore a sense of significance and increase self esteem.

Third, unlike other psychotherapeutic interventions, facilitators taught income-generating skills to mitigate poverty, which has been shown to be a potent risk factor for depression.

Addressing depression in resource-poor settings

Our study provides the first evidence of the success of this kind of group intervention in breaking the negative cycle of poverty and poor mental health in a resource-poor setting.

Six months after the programme ended, 80% of participants said the intervention had reduced their depression and motivated them to make positive changes in their lives.

Our findings also suggest that it is possible to roll out this kind of treatment in poorly resourced rural areas. Non-mental health professionals can be trained to deliver psychotherapeutic interventions in places where it is not possible to employ sufficient numbers of mental health providers.

The shifting of mental health-related tasks from health professionals to para-professionals or non-health professionals has been well-documented in non-HIV populations.

But less is known about the effectiveness of such a shift in HIV-positive populations. We now have evidence that specialists at tertiary institutions can train mid-level mental health workers to effectively deliver group support psychotherapy.

Looking ahead

We plan to expand capacity at primary health-care centres in three districts in northern Uganda. This will allow for depression diagnosis and treatment for those receiving HIV services at these centres.

Strategies include developing tailored training curricula to teach non-specialised health workers to recognise depression and employ group support psychotherapy in its treatment.

They will also be trained to teach lay health workers to deliver group support psychotherapy to HIV-positive people. This will make first-line treatments more widely accessible and sustainable.

Share this

For the First Time, Alzheimer’s Is Diagnosed in Someone With HIV 28/04/2016

Published at: Treatment News

April 28, 2016

Clinicians at Georgetown University have reported the first case of a person living with HIV receiving a diagnosis of Alzheimer’s disease. Publishing their findings in Alzheimer’s & Dementia: Diagnosis, Assessment & Disease Management, clinicians diagnosed a 71-year-old HIV-positive man with Alzheimer’s disease after a PET scan showed deposition of amyloid in the brain.

Some clinicians have theorized that people with HIV might not develop Alzheimer’s because HIV-related inflammation in the brain may prevent the formation of amyloid clumps. This man’s diagnosis may be an indicator of what is to come for an aging HIV population.

The report suggests that some older people living with HIV and dementia may be incorrectly diagnosed with HIV-associated neurocognitive disorders (HAND) when in fact they are developing Alzheimer’s disease. In addition, some may develop HAND as well as Alzheimer’s disease, experiencing a new form of mixed dementia.

To read a press release about the study, click here.

Share this

What Is Chronic Inflammation and Why Is It Such a Big Deal for People With HIV? 5/4/2016

Published at

April 5, 2016 Benjamin Ryan

Antiretrovirals (ARVs) have added decades to the life spans of people living with HIV who have access to treatment. Nevertheless, when compared with HIV-negative people, those taking treatment for the virus still have a higher risk of various health problems typically associated with aging. The reasons behind these increased health risks still aren’t very well understood, but the scientific community is eagerly looking for answers. Researchers are inclined to point the finger at a phenomenon known as chronic inflammation as a main culprit.

When you get a cut or infection, your immune system jump-starts a cascading process that sends to the site a diverse army of cells that promote healing and infection control and give rise to inflammation. Included in this complex, interconnected battalion are CD4 and CD8 cells (known as “helper” and “killer” T-cells), antibodies, clotting factors and pro-inflammatory cytokines, among many others.

Normally, certain cells will turn off this healthy inflammatory process when the healing or infection-fighting process is complete. But sometimes, inflammation persists over the long term and can become counterproductive, causing damage to healthy cells and tissues. In HIV-negative people, chronic inflammation is tied to a host of diseases, including cardiovascular, autoimmune, liver and kidney diseases and cancer.

HIV itself appears to give rise to chronic inflammation. The virus also leads to dysregulation of the immune system, which can further fuel inflammation. Many scientists believe that HIV-related chronic inflammation contributes to HIV-positive individuals’ increased risk of cardiovascular disease, neurocognitive disease, osteoporosis (bone loss), liver disease, kidney disease, frailty and some non-AIDS-defining cancers. These are all conditions associated with getting older. People with HIV tend to get them at younger ages than their HIV-negative counterparts.

Within weeks of infection, HIV begins a massive assault on the gut, which has a high concentration of CD4 cells. Even very early treatment of the virus may not totally reverse this damage, which appears to cause chronic inflammation by allowing harmful microbes to seep into the body (in a process called microbial translocation), thus spurring more immune activation and chronic inflammation.

While HIV treatment does help fight the immune dysfunction and chronic inflammation caused by the virus, ARVs don’t necessarily wipe out these effects. For one thing, having an undetectable viral load doesn’t mean the virus is totally silent. Low-level viral replication may still persist—and at a high enough level to prompt a constant state of alert from the immune system, a chronic inflammatory state. Consequently, over-activated immune cells may be driven to a state of exhaustion, similar to what is seen in older people. HIV may also disrupt the cells that turn inflammation on or off, possibly compromising the body’s ability to properly regulate inflammation.

People with HIV tend to have higher rates of other viral infections, such as hepatitis B or C viruses (HBV, HCV) and cytomegalovirus (CMV, which is in the herpes family), which may also contribute to chronic inflammation and immune activation.

Additionally, HIV may cause scarring in both the thymus and the lymph nodes, leading to interference in the body’s ability to fight infections. The thymus is an organ in the chest that is responsible for manufacturing T-cells, while the lymph nodes are responsible for coordinating immune responses to infections.

The numerous serious health problems to which chronic inflammation could give rise may sound alarming. But Steven Deeks, MD, a professor of medicine at the University of California, San Francisco (UCSF), who is an expert in HIV-related chronic inflammation, says, “It’s important to emphasize that the effect that we’re talking about is not dramatic.” Such an effect, he says, “will likely not have much of an impact on people’s quality of life—their overall health, really—until people are in their sixth, seventh decades of life, at which point in time it could very well be much more apparent.”

Research into treatments for chronic inflammation:

“I think the jury is still out whether the best approach is to target the inflammatory response or rather to target the root drivers of the inflammatory response: HIV itself, coinfections, microbial translocation,” says Peter Hunt, MD, an associate professor of medicine at UCSF who also studies HIV-related chronic inflammation. “One of the problems is that we don’t really have successful interventions to block those root causes; we don’t have any interventions that turn off HIV expression.”

Several research studies have suggested that the cholesterol-lowering medications known as statins may lower chronic inflammation among people with HIV and protect them against its harmful effects. But results from a study that provides gold-standard scientific evidence of such benefits from statins are still lacking. Researchers are currently enrolling a planned 6,500 participants into such a trial, called REPRIVE. The study includes people with HIV who are taking ARVs and who wouldn’t normally be in a position to take a statin; they will be randomized to either receive a statin or a placebo. The study will hopefully answer whether statins’ anti-inflammatory effects will translate into a lowered risk of disease, such as heart attack or cancer, among people with HIV. Unfortunately, results aren’t expected until 2021.

Other on-the-market medications currently under investigation as anti-inflammatory agents for people with HIV include Micardis (telmisartan), a blood-pressure medication, and the diabetes medication Vildagliptin (galvus). Research has already shown that aspirin does not apparently help HIV-related inflammation.

Scientists are also investigating to see whether probiotics, which promote desirable bacteria in the digestive system, may affect the body’s so-called microbiome in a way that helps lower gut-related inflammation.

Seeking to directly affect inflammatory pathways, researchers are looking at drugs used for inflammatory diseases, like the autoimmune disease rheumatoid arthritis, and are even looking at some cancer treatments. Other research is examining drugs that inhibit major indicators of inflammation, called biomarkers, such as the cytokines interleuken-1 or -6 (IL-1, IL-6).

Experts generally agree that a cure for HIV, if it is ever developed, remains decades away (contrary to recent erroneous news reports). In the meantime, as researchers strive to develop ways to shrink the size of the viral reservoir and, in turn, likely reduce low-level viral replication, they may wind up with treatments that, even if they don’t cure someone, end up dampening chronic inflammation.

Things you can do to fight chronic inflammation and its potentially harmful effects:

According to Deeks, the long-term damage caused by HIV-related chronic inflammation may be easier to prevent when people are younger, as opposed to reversing the damage once people are elderly.

Ways to prevent such damage include:

  • Early treatment. Research has shown that starting ARVs as soon after infection as possible reduces the likelihood of health problems linked to inflammation, such as heart attack and certain cancers.
  • Take your ARVs every single day. Recent research found that anything less than 100 percent adherence was tied to higher inflammation.
  • Don’t smoke. Smoking is especially harmful among people living with HIV (not to mention highly common) and can exacerbate inflammation in the arteries.
  • Eat a healthy diet. Research has shown that the so-called Mediterranean diet reduces the risk of heart attack or stroke.
  • Get moving. Regular exercise reduces your risk of numerous health problems.
  • Shed body fat. Fat tissue may be a source of inflammation.
  • Treat coinfections. Hep C is now curable through as little as eight weeks of treatment, and hep B is treatable. Both infections can cause severe damage to the liver; even well-treated HIV can accelerate such damage.
Share this

Out of the Blue 4/4/2016

Out of the Blue

Mark Leydorf

 Depression is often a silent partner to HIV

You’ll never forget the day you learn you’re HIV positive. The experience of walking out of the clinic in a fog and collapsing into sobs is all too common. For most of us, a period of depression followed our diagnosis, but for a lot of us, depression predates the bad news.

Mary Ann Cohen, MD, a clinical professor of psychiatry at Mount Sinai Hospital in New York and a private practitioner, says HIV incidence is 10 to 20 times higher in people with mental illness. “It’s a triad—depression, substance use and violence—that can lead to HIV/AIDS,” she says.

Studies have found that people with mental illness are up to five times more likely to get HIV. In a 2009 study of people who’d recently contracted HIV, 85 percent had a history of substance use, and 53 percent had a depressive or bipolar disorder. Other studies suggest that 35 to 40 percent of all people with HIV have had a major depressive disorder, compared with 15 percent of the general population, and that alcohol and drug use are two to five times as common among people with HIV.

Even for those without a history of mental illness, depression often comes after an HIV diagnosis. “People with HIV go through a long period of adjustment,” says Paul Bellman, MD, a former board member of GMHC who retired in 2013 after 28 years of treating people with HIV at his Manhattan practice. “There’s a lot of variability, but everyone pretty much struggles with it—they do better, then they struggle again.”

How do we cope? Below are the stories of three people living with HIV who have found a way to coexist with, and even overcome, their depression.

Chad Taylor does not recall being depressed growing up in Richmond, Virginia; at least he never had a need to see a doctor for it. Regardless, his 1990 HIV diagnosis—he was in the Army, stationed at Fort Benning, Georgia—changed everything. “I felt alone and doomed,” he says. Soon he stopped saving money, forgot about finding a career, and became cavalier about sex and drugs.

In 1999, he moved to New York and dove headfirst into the crystal meth scene. He found a bit of relief from his terror and isolation in the “peculiar fraternity” of HIV-positive men having anonymous, drug-fueled sex. He remembers meeting someone who’d survived for 12 years. “I was amazed and inspired by him,” he says. “I never imagined I’d be a long-term survivor.”

Ultimately, drugs were a flawed solution, leaving him to vacillate between despair and giddiness. Finally, Taylor sought psychiatric treatment. His doctor diagnosed him with bipolar disorder and put him on a mood stabilizer and antidepressant, but they didn’t help much.

“The problem was that I was actively using drugs by then, drugs that affect [pleasure chemicals in the brain such as] dopamine and serotonin,” Taylor says. His story underscores the importance of being diagnosed properly: If he’d been honest about his substance abuse, his doctor might have come to a different conclusion.

Eventually Taylor did get sober, but it took years of emotional seesawing to settle on the correct treatment, a low dose of Prozac (fluoxetine), which he still takes. But more important to him than medication has been his 12-step recovery program, which taught him to rethink his response to conflict and perceived rejection. “Recovery has given me tools to put those feelings into perspective and frame them in a different way,” he says.

Taylor pays a lot of attention to his diet; with his doctor’s help, he became a vegan four years ago. He’d like to work out more, but finding time is a challenge. He began teaching three years ago, and his job keeps him very busy. “I poured myself into my work, was outgoing and friendly with my colleagues, doted on my students and formed relationships with their parents.”

Now sober for around seven years, Taylor says his work life has eclipsed his social life—but he doesn’t mind. “I spend my days interacting with adolescents, which is invigorating.” Last year, he was elected Teacher of the Year.

Susan Rodriguez tested positive after her husband was diagnosed with AIDS in 1995. “My three children—Samantha, Christina and Joseph—had to be tested,” she says. “It turned out Christina, my middle child born in 1991, was also HIV positive.”

Rodriguez, 56, who lives in Upper Manhattan, never suffered from depression in her youth, but the dual HIV diagnoses—and her husband’s AIDS-related death a year later—left her reeling. “All I could think about was dying and what would happen to my kids.” In 1996, she quit her job as a legal secretary. “It was too much for me,” she says. “I just couldn’t concentrate anymore. This probably was my darkest hour.”

Making matters worse, Rodriguez was diagnosed with breast cancer not long after she started antiretrovirals (ARVs) in 1999. She began chemotherapy that November, immediately after she turned 40—“Happy birthday to me!” she jokes—and between that and her ARVs, she dealt with months of side effects, including losing her hair. Undaunted, she stayed on all of her meds. And it paid off on both counts: She’s been cancer-free and has had an undetectable viral load since 2000. Apart from a mini-stroke in 2007, she’s been in great health.

Rodriguez saw a series of therapists and took antidepressants for the next several years. In addition to psychotherapy, she says, “What gave me the most control was taking better care of myself. Eating healthy and staying active became part of my treatment regimen, not only for HIV but for me, mentally.” Walking a few miles with her dogs, Ollie and Mork, is central to her sanity. “That’s one of the reasons I have them,” she says. “And they’re fun to be with.”

But like Taylor, Rodriguez says finding support and a passion—hers is activism—turned things around. When she was diagnosed, she picked up a copy of Body Positive, a now-defunct HIV/AIDS magazine, and was inspired by what she read. “It gave me some kind of hope.”

She then saw a woman on the cover of POZ magazine. “It was Michelle Lopez with her daughter,” she says. “I thought, ‘Wow, how could she do that?’ It was a time when I couldn’t tell anybody!” This was around the time she quit her job. “I really had no community.” But the magazines directed her toward one: The PWA Health Group.

In 1998, with help from her new friends, Rodriguez founded SMART: the Sisterhood Mobilized for AIDS/HIV Research & Treatment. “First, we came up with the name ‘SMART’; then we came up with what the acronym would mean,” she laughs. “I don’t know what possessed me!”

She started going to HIV/AIDS conferences. Her life really turned around when she spoke in front of an audience for the first time. Each subsequent speaking opportunity gave her even more confidence. “I would get up to a mic and say, ‘I am living with HIV.’ I didn’t realize what that power was.”

Fairly reserved when talking about herself, Rodriguez explodes when the topic turns to SMART, which celebrates its 18th anniversary this year. “I have the most wonderful team,” she says. Paging through a glossy cookbook the organization produced, she starts talking about its Food for Life project. “This keeps me energized, hopeful and positive about SMART moving forward, beyond HIV.” She adds, “I never thought of SMART as part of my recovery, but I guess it has been.”

Peter Robinson was 11 years old and playing with a cap gun when his friend fired a shot that ricocheted off a Quaker Oats box and hit Peter in the eye. “It was that thing you always hear,” Robinson says. “It’s fun until someone loses an eye.”

Going through life with only one eye hasn’t limited his vision at all. “I’ve been making art—doing something—since I was a kid.” Robinson, a photographer in New York, has always had what he calls “a pioneering spirit,” and began traveling when he was 22. Now 69, he’s been around the world close to 50 times. Working in international trade has meant he’s often traveled to Asia. “When Nixon signed the deal opening China up, I was in Hong Kong waiting for the train,” Robinson remembers. “I was the only black person in all of China, probably, apart from a newspaper reporter.”

In addition to leading the way in his travels, Robinson has been an AIDS pioneer. He spent much of the 1980s in hospitals, volunteering for buddy programs and caring for sick friends before they died. One of those men’s deaths stands out in his memory. “He was so angry,” he says. “I was living, and he knew he was dying.” Robinson learned in 1986 he had the virus. “Finding out I was positive eased my guilt.”

He had been sure his partner, Gary Jacinto, would have the virus, but he himself would not. When it turned out they were both positive, “of course I was shocked,” Robinson says, but he wasn’t the type to get depressed.

Although he’s been HIV positive for more than 30 years, Robinson doesn’t think of himself as a survivor. “Did we really make it?” he asks. “I don’t know. I’m a witness. I’ve seen a lot happen.”

Like many people who came through the plague years, he struggled with post-traumatic stress disorder (PTSD). At his East Village apartment in the 1990s, he’d put up pictures of his friends as they passed away, filling both walls of a long hallway. “It was my way of dealing with the loss,” he says. “I finally realized I had to take down the pictures—they kept me in a constant state of mourning.”

That he might die never occurred to him until the early ’90s, when Kaposi’s sarcoma lesions turned up in his stomach. “It became real when I had to tell my family,” he says. But even this didn’t depress him. It wasn’t until 1995, when his father and his partner were both told they had lymphoma, that Robinson finally experienced a prolonged bout of despair. His father died, and it seemed as if his partner would soon go, too. “Gary and I had buried all our friends, and he wasn’t long for life.”

To cope, Robinson went online—AOL was just becoming a thing—to find a community. “I went out on AOL as Black Man Looking for Friend, BMLKG4FRND.” His openly HIV-positive profile began attracting other positive people. “Some of those people are still friends today.” The chat rooms gave him something to do, a place where he could deal with reality.

Robinson had never actually talked about HIV to anyone. Online he began to come out of his shell. Thankfully, his partner survived lymphoma and a host of other illnesses. Although marriage for same-sex couples wasn’t legally recognized at the time, they tied the knot in 1998. Unfortunately, a different kind of setback lay ahead.

Robinson’s career had evolved to where he was giving international commerce seminars at the World Trade Center. He lost his business when the buildings came down on September 11, 2001. The depression that set in then hasn’t gone away completely, he says. He started going to therapy in 2001 when he closed his company, and stuck with it until 2009.

“The issues I have are so different now. Photography has changed my purpose.” He started taking pictures to document his travels, but later began selling the prints. His work has since been shown at several exhibits and galleries, including Visual AIDS, the Leslie-Lohman Museum of Gay and Lesbian Art and the New York Center for Photographic Art.

This last year has been hard, and Robinson, practical as always, says he’s thinking of reaching out to his old therapist. He fell down last winter pulling another animal off his dog—Clyde is a rescue from Long Island, who, like his owner, has one eye—and rehab from those injuries has taken almost a year.

He still can’t venture far from his studio in Battery Park City. But that’s OK. He wakes up every morning and goes to bed at night looking out a picture window up the Hudson River. “I guess it’s God’s way of telling me, ‘This is what you’ll see.’ I amaze myself with what I see.”

Offering further insight on how to cope with depression, Mary Ann Cohen and Paul Bellman point out that all too often, we ignore our depression, are afraid to mention it or only reveal part of the story—and that doesn’t work.

“The denial aspect is huge,” Bellman says. “If someone doesn’t tell you they’re depressed, it can be pretty hard to know.” With people like Taylor who have substance use problems, it’s usually more obvious they’re depressed. “The two work together in a negative way,” Bellman says.

Cohen believes a combination of therapy and medication is the best treatment for a depressive disorder. “If you look at functional MRIs [brain scans], like 40 percent or 50 percent improvement can be clearly documented whether you give talk therapy or psychiatric medication,” Cohen says. “But if you give both—it’s like 90 percent improvement.” Finding the right therapist is key. “The one thing I can’t overemphasize enough is that if it’s not working—try someone else!” Bellman says.

Bellman and Cohen, who’ve been working with people living with HIV since the beginning of the epidemic, both lament that the number of support groups has dwindled since the ’90s. In this respect, people in recovery from substance use have a unique advantage: the community they find in 12-step groups.

“They’re there because of an addiction issue, but then they get this other benefit,” Bellman says. “I often wonder, ‘What about people who don’t have a 12-step group?’” He also extols the benefits of fitness and exercise. “Do yoga, join a team, get your endorphins going. Find out what works for you.”

Cohen agrees that social and mental engagement, a good diet and exercise, and a spiritual practice can all mitigate depression. She also emphasizes the value in having a job: “Someone who’s continuing to work has a much better prognosis,” she says. “People get so much better when they feel passionate about something.” Bellman concurs: “If a person is just withdrawn, they tend to become homebound,” he says. “And that creates a vicious cycle.”

“A person who’s self-isolating, or has been cut off by their family—and it still happens, even in 2016—has a much harder time overcoming depression,” Cohen adds. “I try to help people create a network. Work is important, and love is important.”

Share this

The Cost of Long-Term Survival 02/2106

Published at

New Fears Evolving With Age

January/February 2015

"We long-term survivors get lost in the present atmosphere that says HIV is no longer a big deal. It is a big deal for us as we deal with the effects of long-term infection and the accumulated ravages of taking the meds. I feel alone and forgotten; and, I envy those who died back in the '80s and early '90s."

"Recently I had to add testosterone to my daily medication regimen and as soon as I get myself to the doctor for an A1C screening I know I'm going to be put on oral diabetes medication. I mean, when is enough enough? What is the reason for scraping to stay alive and healthy when there's nothing to look forward to but more chaos, uncertainty, and pain?"

"I recently read the question by someone [wondering] whether he 'deserved to live.' My question is, 'Do I want to live?'"

These are some of the comments HIV treatment advocate Nelson Vergel has received in his work with Ask the Experts at TheBody.com, a website devoted to people living with the virus. Earlier this year he sent out a message to the PozHealth listserv and to Positively Aware, linking to these letters from readers who had virtually given up or who feared for their future.

Wrote Vergel, "I am getting so many emails like these. We really need to have a discussion about how prevalent depression while aging with HIV is, and how we should advocate for special services for the 'AIDS veterans.'"

The former chemical engineer and co-author of Built to Survive travels extensively around the country giving talks on HIV nutrition, exercise, and treatment, so he constantly hears the concerns of people living with the virus. He wrote a blog entry entitled "The Long-Term Survivor Dilemma" three years ago, but said he's hearing more and more about the problems he discussed then, including a sense of shame about admitting fears.

"People wonder, 'Why have I tried this hard if my future doesn't look that great?' The thing is, those people can't say that to anyone because people say you should be happy you're alive, but sometimes we don't feel very happy to be alive," Vergel said. "We don't feel safe enough to admit any of this. Gay, straight, male, female -- we had this intense fear of death. You're almost afraid to release it. And we are still waiting to be happy."

Vergel said he experiences mood swings, crying jags, numb emotions, and constant unexplained aches and pains.

"Maybe you have PTSD [post-traumatic stress disorder]," a friend told him one day. It suddenly all began to make sense.

"We don't have a place to go for vets with HIV. That's what we are -- veterans of a war, but we don't have that recognition or support," said Vergel. "I had to bury all these friends and my boyfriend. I completely shut down that part of myself so I don't suffer. I don't cry and I don't grieve." He didn't even feel anything when his father died, making Vergel wonder what was wrong with him.

"We have concentrated on viral load and T-cells for 30 years, and we have neglected this side of us," Vergel said.

Although married to a psychiatrist, his long-term partner of 20 years, Vergel finds that only others who have lived his experience can understand it. "We're a minority within a minority. Only another person who's gone through it really gets it. People tell us, 'you need new friends' or, 'get out of the house more.'" Many, he points out, also continue to live with lingering body and facial changes from lipodystrophy as well, creating yet another stressor.

Having talked with people all over the country who are living with HIV and getting constant messages from many others, Vergel has seen that having survived trauma and perhaps not having dealt with it, long-term survivors now face renewed fears about illness, with all the added concerns of the later stages of life. As the epidemic shifted to one with viable medications, those who have survived the earliest days live not only with leftover health issues, but with the financial constraints that go hand-in-hand with medical care. Now there are health problems on the horizon with no foreseeable extra resources for those with limited incomes. Vergel's cancer diagnosis and chemotherapy last year brought out all these fears and insecurities.

In that blog entry, he wrote, "Many people with HIV on permanent disability struggle by on less than $1,000 a month to pay all their bills. Others who get payments from private disability policies from their last job will lose them when they reach age 65. But who thought we were going to live to be 65 anyway?!"

Vergel has eight friends who are set to lose their former job's disability income, and it terrifies them. The City of San Francisco is looking at its aging HIV-positive population and what will happen as those who have private disability plans reach retirement age and lose that income. The activist group Let's Kick ASS, or AIDS Survivor Syndrome (see "Kicking ASS: Long-Term Survivors of HIV/AIDS Take Control of Their Destiny" in this issue), is reaching out to people who are in this position. (Contact LKA co-founder Tez Anderson at Tez@LetsKickASS.org.)

"They feel trapped financially," Vergel says of long-term survivors. "They can't regain their financial health. There's lots of fear and depression, a lot of anxiety."

Vergel also wonders what will happen to nursing homes and other care facilities for those with the added layer of HIV. There might be a lack of LGBT-friendly places. "Where are we going to fit?" he asked. Then also, there are no non-profit organizations working on any of these issues, he said. "We're lacking creative solutions."

Meanwhile, bad news about aging and HIV continues to come out from medical journals and conferences. "We don't want to hear that," said Vergel. "We want solutions."

"We used to have retreats," he recalls. "We don't have the social networks we used to have. All we have now is the Internet."

One of the difficulties of long-term survivors is not wanting to appear weak or whiney. Said Vergel, "We try to live in the present and be happy, but there's also this ticking time bomb."

Share this

First HIV-to-HIV Organ Transplants Performed 31/03/2016

Published at

March 31, 2016

One donor, an HIV-positive woman who recently died, provided a liver to one recipient and a kidney to another. According to Johns Hopkins, both recipients are doing well; one has already left the hospital, and the other will be discharged soon.

Since 1984, organ transplants between two HIV-positive people were prohibited. Thanks to advocacy by transplant surgeon Dorry L. Segev of Johns Hopkins University School of Medicine, the ban was lifted when the HIV Organ Policy Equity (HOPE) Act was passed by Congress and signed by President Obama. In February of this year, Johns Hopkins became the first hospital to be approved for the transplants.

According to research by Segev, about 500 to 600 HIV-positive donors would be eligible to donate kidneys, livers and other organs once the ban was lifted, which would save about 1,000 lives each year.

Hospital protocols require that the donor and recipient be on similar HIV-drug regimens.

The donor and recipients remain anonymous. But the Baltimore Sun reports that the donor’s family provided a statement to the New England Organ Bank. “From early childhood she always stuck up for the underdog,” said the statement. “HIV was not a choice she made, but she fought it for herself and our family every day. As we all know, HIV is a stigma and people with the disease are unfortunately at times treated differently.... She was able to leave this world helping those underdogs she fought so hard for.”

Read POZ’s March 2012 cover story “The Right to Give Life” to learn about one couple’s battle to overturn the ban on HIV-positive organ transplants.

Share this

Even One or Two Drinks a Day Can Be Harmful to People With HIV. 18/02/2016

Published at aidsmeds.com

12 February 2016

The safety threshold for alcohol use is lower for HIV-positive people. Publishing their findings in Drug and Alcohol Dependence, researchers analyzed data from the Veterans Aging Cohort on 18,145 HIV-positive and 42,228 HIV-negative individuals receiving care from the Veterans Health Administration between 2008 and 2012.

Seventy-six percent of the HIV-positive population had undetectable virus.

The researchers found that people living with HIV were more likely to die and experience physiological harm connected with drinking alcohol than HIV-negative individuals. Consuming as little as one or two drinks per day was enough to raise the risk of harm among the HIV-positive population. This finding held true for those with a fully suppressed virus.

Specifically, having at least 30 drinks per month was associated with a 30 percent higher risk of death or physiological harm among people with HIV. Meanwhile, consuming at least 70 drinks per month was associated with a 13 percent increased risk of death or physiological harm in the HIV-negative group.


Taxonomy upgrade extras: 
Share this

For HIV-Positive Teens, Stigma Seen as Greatest Threat, Not Virus. 07/01/2016

Published at nation.co.ke

Writen by Pauline Kairu

21 December 2015

In Summary

  • Her colleagues, part of the 200-member initiative dubbed Sauti Sikika (Voice Be Heard), a small outfit supported by the National Empowerment Network of People Living With HIV/Aids in Kenya (Nephak), watched as she started addressing the President.
  • But children are wired to believe their teachers, not their colleagues, and so most carry on with the misleading assumptions that reinforce the misconceptions Nduku and her colleagues are trying to eliminate.
  • The problem is a global phenomenon. For instance, the US Aids Info support centre, in a 2014 article titled Considerations for Antiretroviral Use in Special Patient Populations, says that “adolescents are developmentally at a difficult crossroad.”


Sometime in February this year, President Uhuru Kenyatta was addressing an anti-HIV gathering in Nairobi when he suddenly deviated from his speech, looked into the crowd and asked one of the HIV-positive teenagers listening to him to rise up and tell him what his government could do to make their lives better.

With that sudden invitation, the room went silent. The President’s baritone vanished from the loudspeakers in the room. Heads turned towards the group of teenagers, from where they expected a volunteer to rise. The teens, in return, bowed their heads, unwilling to rise up to the challenge.

Pin-drop silence.

After what seemed like an eternity of uneasy calm, a young girl rose from among the teens. You could hear the collective heave of expectation as she made the first unsteady steps towards the microphone.

Mercy Nduku, 17, was not part of the programme, not even part of the youth leadership invited for the event. She had just itched to end the uncomfortable silence.

She knew the things she wanted the government to do for her and her peers. She, after all, had sat through numerous discussions with her HIV-positive colleagues to take stock of their struggles, and inwardly had waited for this moment.

Her colleagues, part of the 200-member initiative dubbed Sauti Sikika (Voice Be Heard), a small outfit supported by the National Empowerment Network of People Living With HIV/Aids in Kenya (Nephak), watched as she started addressing the President.


Her message was simple: end the discrimination, and the stigma. She did not ask for mountains, but for something she believed every human being could afford. And then, amid a thunderous applause, she walked back to her seat.

Ten months later, Nduku was invited to address the gathering at the World Aids Day celebrations in Nairobi on December 1, graced by, among others, the First Lady Margaret Kenyatta.

“Stop discrimination,” she repeated her message. “It is the biggest threat to overcoming the spread of HIV, especially among us the young people.”

It was, again, a simple message, but one laden with a lot of questions. Why, for instance, did she think discrimination was the “biggest threat” to overcoming the spread of HIV? And what kind of discrimination was this she kept talking about? Was it from the society? Or colleagues? Or state institutions?

To answer those questions, we traced her to her Masewani home in Kangundo, Machakos County, and there she clarified her never-changing message.

“The shame and stigma of HIV is literally killing us as we suffer in silence,” she said. “That is why none of my colleagues stood up to address the gathering in Nairobi when the President invited us.”

Even as she talked to us, you could see the passion in her eyes. And beneath that passion you could sense the desperation in her voice. She lamented the lack of access to HIV drugs, the outdated sex education curriculum that she and her agemates are expected to study in school, and the outright refusal by opinion leaders to address the realities of the disease on the ground, especially in rural Kenya.

“For instance,” she said, “even though sex and HIV education are part of the school curriculum, they are not taken seriously in most schools. The teachers, for whatever reason, just wearily brush over the topics, skipping some really important sections of the lessons and so giving half-truths to their students. This seems to be a general problem, because it has been repeated in our discussions at the group level.”

Nduku is particularly bothered by a science book that she says claims HIV kills. Yet, she stresses, “we know HIV does not kill”.


“I have argued with teachers and fellow pupils about this several times. I remember arguing with my science teacher in Standard Six about the same. He insisted I was wrong, and then threw in the authority card by reminding me that he was the teacher. But I know my truth. I have HIV and I am not dead, that’s all that matters.”

But children are wired to believe their teachers, not their colleagues, and so most carry on with the misleading assumptions that reinforce the misconceptions Nduku and her colleagues are trying to eliminate.

“I think this old message has continued to entrench stigmatisation,” she explains. “We need to unlearn it, and that can’t happen unless the curriculum is changed.”

When she brought this to the attention of the President, Kenyatta promised that the curriculum would be changed to reflect the realities of HIV/Aids.

He then asked the Cabinet Secretary for Education to re-examine the national curriculum to better engage with young people living with HIV and to eliminate stigma and discrimination in schools.

Nduku, who was born with the virus, was only put on medication for the first time in 2003, then aged five, when her mother died of Aids-related complications. Her aunt, Ann Yula Mutuku, says Nduku’s father died three years later, again of similar complications, and that Nduku has been in her care since then.

The family only came to know of her condition when a doctor, who had treated her for various diseases — a never-ending cough and frequent bouts of malaria and pneumonia, for instance — advised a detailed blood sample analysis. Immediately, Nduku was put on Septrin medication.

She began taking antiretrovirals (ARVs), the drugs given to patients to suppress the HIV virus and stop its progression, after six months.

“She still didn’t know what the drugs were for. She was only five and in nursery school at the time, too young to understand,” says her aunt.

Being the guardian, Mutuku was counselled and educated on how to treat and feed her niece. But when Nduku came of age, the burden shifted from her aunt to herself. She was the one to explain herself to colleagues, friends and whoever wondered why she kept popping pills.


“While I was in primary school I didn’t have much trouble swallowing the medicine because I did it early in the morning at around six before I went to school, and again in the evening when I returned home. The problem came when I joined secondary school,” says the Form Two pupil at Fr Heeran High School in Nguluni, Kangundo.

“It was while in Form One, and still a First Term fresher, that I had my first ‘medicine holiday’. I skipped medication for about three days because I was stressed about having to always hide while taking the pills,” she says.

She had made plans to have a constant supply of the ARVs, and had carried to school a whole term’s supply of pills, but now she was finding it difficult to explain to fellow students why she was taking drugs yet she looked healthy.

And so she told herself that since she felt okay, she was okay. Nothing would happen to her if she stopped taking the medicine. Of course she was wrong, and she immediately started losing weight and developing complications. That, she says, explains why so many young people living with HIV die young when they join boarding school. All of a sudden thrust into a world where they have to take charge of their lives, and with hundreds of pesky teenage eyes rummaging through their lives, they cannot cope with the negative attention, and so they stop taking their ARVs altogether.

The problem is a global phenomenon. For instance, the US Aids Info support centre, in a 2014 article titled Considerations for Antiretroviral Use in Special Patient Populations, says that “adolescents are developmentally at a difficult crossroad”, and that “their needs for autonomy and independence and their evolving decisional capacity intersect and compete with their concrete thinking processes, risk-taking behaviours, preoccupation with self-image, and need to fit in with their peers”.

This explains Nduku’s hesitation with ARVs in school, and also “makes it challenging to attract and sustain adolescents’ focus on maintaining their health, particularly for those with chronic illnesses”.

The paper goes on to say that “HIV-infected adolescents are especially vulnerable to specific adherence problems on the basis of their psychosocial and cognitive developmental trajectory”, and that, compared with adults, “these youth have lower rates of viral suppression and higher rates of virologic rebound and loss to follow up”.

According to the National Aids Control Council (NACC), 435,225 adolescents (ages 10 to 19) are HIV-positive, while another 119,899 have the virus “but are not yet identified”.

As a result of delayed treatment, and the overbearing stigma and discrimination associated with being HIV-positive, about 29 per cent of all new infections are among adolescents and young people, according to a survey released by the Ministry of Health on World Aids Day this year.


As a result, Aids-related complications are the leading cause of death among adolescents and young people, with 9,720 adolescent and young people dying of such in 2014 alone.

The report further shows that one in every five youth aged between 15 and 24 years had sex before the age of 15. Of concern to researchers is the fact that even though more girls than boys use condoms during their first sexual encounter, they abandon the protection with partners of unknown status (89 per cent) as sexual relationships progress.

“We are the most vulnerable group,” says Nduku. “We are one of the segments most at risk of HIV. We need prevention strategies tailored and testing campaigns focused specifically on adolescents. Many of us are dying young because we do not know our status, or because of the stigma associated with the virus.

“Our parents think we are too young to know our status, or to know about sex and HIV. Nobody wants to discuss these things with us. They mistakenly think they are protecting us by not disclosing it to us or how it is spread. Yet some of us were born with it and HIV and sex amongst teenagers is a reality. The earlier you know your HIV status the better because then you are put on medication and you protect yourself and others.” 

Many HIV-infected adolescents face challenges in adhering to medical regimens for reasons that include: 

  •  Denial and fear of their HIV infection

  •   Misinformation

  •   Distrust of the medical establishment

  •   Fear and lack of belief in the effectiveness of medications

  •   Low self-esteem

  •   Unstructured and chaotic lifestyles

  •   Mood disorders and other mental illness

  •   Lack of familial and social support

  •   Absence of or inconsistent access to care or health insurance

  •   Risk of inadvertent parental disclosure of the youth’s HIV infection status if parental health insurance is used.

 As Kenyan youth struggle, Chinese counterparts are falling 

CHINESE HEALTH OFFICIALS and researchers have raised alarms over an increase in new infections among high school and college students. Most are young men who have had unprotected sex with other men, Wu Zunyou, director of the National Center for AIDS and Sexually Transmitted Disease Control and Prevention, told China Daily in November this year.

As of October, China had about 575,000 people living with HIV/AIDS, according to Chen Zhongdan, a Chinese adviser to UNAIDS, the United Nations’ AIDS-fighting agency.

Before 2009, most reported HIV infections in China were caused not by sex but by intravenous drug use, blood transfusions, mother-to-child transmission and an “unknown” factor as high as 17.5 per cent, according to the figures from the Chinese Center for Disease Control and Prevention.

But now sexual transmission accounts for more than 92 per cent of all new infections, more in line with international norms, the figures show. (By the end of 2014, nearly 39 million people were living with HIV/AIDS worldwide, according to UNAIDS.)

From 1985 to 2005, the statistics showed, about 30 per cent of HIV infections in China were caused by the blood trade, which was often supported by local officials. A common practice was to extract plasma from the blood, which was then pooled and reinjected into blood sellers so they could give more often. The sharing of needles in intravenous drug use was also a major route of infection.

The state has been effective at containing those two problems, said Jing Jun, the director of the Center for Research on Public Health at Tsinghua University.

“But the government seems much less effective in controlling the private sphere of ordinary people’s lives, as evidenced by the rapid increase of HIV infections via heterosexual and homosexual routes,” he said. “The government needs to learn how to use soft power through educational means to change people’s unsafe sexual behaviour.”

So while blood sales, drugs and mother-to-child transmission have dropped drastically as factors, sexual transmission is taking their place and increasing infections overall, with growth especially fast among gay men.

From 1985 to 2005, just 0.3 per cent of reported new infections occurred among men having sex with men. By the end of June 2015, that had risen to more than 27 per cent, the statistics showed.

Male high school and college students ages 15 to 24 are an emerging high-risk group, according to Wang Ning, an Aids specialist at the Chinese Center for Disease Control and Prevention.

Share this

Life Expectancy is Steadily Improving for Older People with HIV. 26/10/2015

Published by POZ

HIV-positive people over 50 have an increasingly longer life expectancy during the modern era of antiretrovirals (ARVs), although it still falls short of the general population’s, Reuters Health reports.

Publishing their findings in the Journal of Acquired Immune Deficiency Syndromes, researchers looked at data from 2,440 members of the Danish HIV Cohort Study (DHCS). They also established an age- and sex-matched control group of 14,888  HIV-negative Danes from the nation’s Civil Registration System.

The median survival after age 50 for the HIV-positive individuals was 11.8 years from 1996 to 1999 and 22.8 years during 2006 to 2014. Between 1996 and 2014, the control group had a median post-50 survival of 30.2 years.

The researchers looked at data on 517 HIV-positive people taking ARVs for at least a year, who had at least 350 CD4 cells and a fully suppressed viral load. The researchers found that this HIV-positive group had a median post-50 survival of 25.6 years, compared with 34.2 years for the group of 3,192 controls matched to this group who did not have major health problems.

Share this

Do Geriatric Conditions Occur Early in HIV-Positive Men? 29/6/2015

By Mathew Rodriguez

The Body

Getting older can give rise to a host of conditions. According to a study of HIV-positive adults in a San Francisco clinic, middle-aged HIV-positive men developed "geriatric" symptoms at a much younger age than did the general population. They experienced difficulties with daily activities, cognitive impairment and urinary incontinence at equal or higher rates to HIV-negative men in an over-65 community, even though their median age was just 57, reports aidsmap.com.

While improved antiretroviral therapy has made a normal life expectancy possible for people living with HIV, it means that researchers must work diligently to find out how HIV interacts with common age-related comorbidities (additional illnesses or medical challenges), including cardiovascular disease and low bone mineral density.

Researchers are especially interested in finding out how frailty, falls and functional impairment affect people with HIV, because these multifactorial conditions are little-studied in HIV-positive populations. These factors are important in identifying vulnerable older adults.

The study authors emphasized that people living with HIV should also seek clinical care for the geriatric symptoms seen in their research.

On average, participants had been living with HIV for 21 years and had a median CD4 count over 500. Fifty-four percent of patients had two or more geriatric syndromes, the most common being "pre-frailty" (a combination of factors such as unintentional weight loss, low physical activity level, weakness, exhaustion and slow walking speed), and impairments in functioning and thinking. Twenty percent of patients reported mild depression and another 18% met criteria for moderate-to-severe depression.

Ultimately, the authors found that these conditions were most affected by CD4 nadir -- how low were the patients' lowest CD4 count, not their current CD4 count -- and the number of comorbidities.

Researchers said the results pointed to an even greater emphasis on early antiretroviral treatment to prevent aging-related complications, and that retention in care and monitoring of HIV-positive people is of the utmost importance.

"Consideration of how to incorporate assessment of geriatric syndromes into HIV care and development of targeted interventions for risk factors of geriatric syndromes is needed as the HIV-infected population continues to age," the authors concluded, as reported by aidsmap.com.

To read more about HIV and aging, visit TheBody.com's Resource Center on Aging With HIV.

Mathew Rodriguez is the community editor for TheBody.com and TheBodyPRO.com. You can follow him on Twitter at @mathewrodriguez, like his Facebook page or visit him on his personal website.

Copyright © 2015 Remedy Health Media, LLC. All rights reserved. 

Share this

Study finds high rates of cancer among older people living with HIV. 6/3/2015.

Published at AIDSMAP
Written by Theo Smart
3 March 2015

 Older people living with HIV (over the age of 65) are at greatly increased risk of HIV-associated cancers, although many of the most commonly diagnosed cancers may be related more to ageing than to HIV, according to a study reported last week at the Conference on Retroviruses and Opportunistic Infections (CROI 2015), in Seattle, USA.

“In our study population, over the course of five years, more than 10% of people with HIV had a cancer diagnosis. This is reflecting the contributions of both ageing and HIV to cancer risk in this population,” said Elizabeth Yanik from the US National Cancer Institute, who presented the study findings during a thematic discussion on cancers in young and older people living with HIV.

Panel including Elizabeth Yanik and Matthias Egger, at CROI 2015. Photo credit: Robb Cohen www.RobbsPhotos.com.

Cancers associated with HIV

As pointed out by Eric Engels of the National Cancer Institute, who moderated the discussion and was a co-author of the study, HIV has long been linked to three AIDS-defining cancers – Kaposi’s Sarcoma (KS), non-Hodgkin’s lymphoma (NHL) and cervical cancer – the risks of which are greatly increased in people with HIV compared to the rest of the population. Another four cancers – Hodgkin’s lymphoma, anal cancer, lung cancer and liver cancer – are also found more commonly in people living with HIV than in the general population.

The relative contribution of these cancers to the overall burden of cancer in people with HIV has been changing, though. Since the era of antiretroviral therapy (ART), opportunistic infections and AIDS-related cancers have been decreasing in incidence – although NHL is still the most common cancer in people living with HIV. The trends for other HIV-associated cancers have been more variable, however. Recently, lung cancer and Hodgkin’s lymphoma appear to be declining in incidence, while the incidence of liver and anal cancer seems to be increasing. In addition, the population with HIV is ageing, and the incidence of certain cancers increases greatly with age.

As of 2010, two-thirds of cancers in people living with HIV were estimated to be non-AIDS-related. And it is important to note that people living with HIV still get prostate, colorectal and breast cancer, as well, though not in excess of what one would typically expect in the general population.

While most of these data come from industrialised countries – because of the availability of good cancer registries – there is some evidence that these trends are similar in developing regions of the world. During the session, Matthias Egger from the Universities of Bern and Cape Town presented data from five cohorts of South African children with HIV linked with cancer registries, identifying high numbers of KS and NHL and lower rates of non-AIDS-related cancers. Encouragingly, the risk of these cancers was about 70% lower among children on antiretroviral therapy.

Cancer among older people living with HIV in the US

One would expect that most of the older people living with HIV in the US would be on antiretroviral therapy and thus have a reduced risk of cancer, but according to Yanik's study, the incidence of HIV-associated cancers remains exceedingly high.

The study looked at cancer incidence among people living with HIV and the HIV- negative population in the US between 2002 and 2009. To do this, the researchers took a 5% population sample of people using Medicare – the national health insurance programme for people aged 65 and older in the US – which was linked to all cancer cases diagnosed in individuals aged 65 or older identified through the Surveillance, Epidemiology, and End Results (SEER) cancer registry. HIV diagnoses were identified through Medicare claims and cancer diagnoses were identified through the linked cancer registries. The 5% Medicare sample contained over 450,000 people, roughly 0.08% of whom had an HIV diagnosis.

The study found an elevation in cancer risk for many of the same cancer types that have been associated with HIV in younger populations – although the increased risk was somewhat lower than observed in younger populations, particularly for NHL (which in general is found more commonly among the elderly). This was also partly due to the differences in the distribution of specific subtypes. HIV-related NHL subtypes, such as Burkitt lymphoma and diffuse large B-cell lymphoma, were more strongly associated with HIV, whereas in the general population 25% of NHL cases were of other specified subtypes that are not closely linked with HIV.

Cancer type

Hazard ratio

Comparing HIV-positive to HIV-negative

(95% Confidence interval)

Kaposi’s sarcoma:

79.2 (42.9-146)

Non-Hodgkin’s lymphoma (NHL)

3.01 (2.24-4.05)

NHL diffuse large B-cell lymphoma

5.56 (3.69-8.39)

NHL Burkitt lymphoma

21.8 (6.91-68.5)

NHL, other specified

1.16 (0.67-1.99)

NHL, unspecified

6.78 (3.93-11.7)

Hodgkin’s lymphoma

9.96 (4.89-20.31)

Anal cancer

32.4 (21.6-48.5)

Liver cancer

3.83 (2.46-5.97)

Lung cancer

1.52 (1.21-1.91)

Colorectal cancer

0.97 (0.69-1.36)

Breast cancer

0.96 (0.56-1.65)

Prostate cancer

0.78 (0.61-0.99)

However, looking specifically at cancer incidence over a period of five years within the population living with HIV, many of the most frequently diagnosed cancers in the study population were those that are more closely related to ageing than to HIV, such as prostate cancer or colorectal cancer. Of the cancers diagnosed, prostate cancer was the most common, followed by lung cancer, NHL, colorectal cancer, anal cancer (caused by human papillomavirus), liver cancer (associated with hepatitis B or C), breast cancer, KS and Hodgkin’s lymphoma.

Overall, the total cancer incidence in this population was substantial: 10.2% of the older people with HIV had a cancer diagnosis within a five-year period. Given the increased risks of cancer associated with both ageing and HIV, Yanik and colleagues concluded that there is a clear need for cancer prevention and screening efforts in people living with HIV.


There was some debate over whether the risk of prostate cancer is truly decreased or whether there is simply less prostate-specific antigen (PSA) testing of men with HIV. On the other hand, this population sees doctors more often than men in the general population. In the past, the somewhat lower risk of prostate cancer among men with HIV has been attributed to hypogonadism, or low testosterone, which was more common among men living with HIV – though it is not clear that this association will persist with earlier and more effective antiretroviral therapy.

One potential limitation of the study was that the population of older people with HIV was somewhat younger than the older people in the general population. At the start of follow-up people with HIV were in their late sixties versus the HIV-negative people who tended to be in their early seventies. If anything, this suggests that the study would tend to underestimate the elevated cancer risk in people living with HIV.

The study also could not collect data about how long people had had HIV or their history of immune suppression or antiretroviral therapy. With earlier and more effective antiretroviral therapy, it is possible that the incidence of the HIV-associated cancers, at least, could be greatly reduced.


Yanik EL et al. High cancer risk among the HIV-infected elderly in the United States. 2015 Conference on Retroviruses and Opportunistic Infections (CROI), Seattle, abstract 725, 2015.

View a webcast of this presentation.

Sawry S et al. (Egger M presenting) Cancer in HIV-infected children: record linkage study in South Africa. 2015 Conference on Retroviruses and Opportunistic Infections (CROI), Seattle, abstract 724, 2015.

View a webcast of this presentation.

Share this

Counselling during routine HIV care reduces rates of risky sex among people on ART in South Africa. 6/10/2014

Published at NAM AIDSMAP
Written by Michael Carter
6 October 2014

HIV prevention counselling delivered during routine care reduces sexual risk behaviour in people receiving antiretroviral therapy (ART) in South Africa, according to research published in the online edition of the Journal of Acquired Immune Deficiency Syndromes. Approximately 2000 people were randomised to receive risk-reduction counselling or standard of care. Over 18 months of follow-up, people in the intervention arm were less likely to report any recent unprotected sex and also recent unprotected sex with a partner who was HIV negative or of unknown HIV status.

“Results demonstrated a substantial decline in HIV risk behavior and persistence of reduced risk behavior supported by the continued presence of the intervention,” comment the authors. “The intervention was delivered during routine clinical care visits, on an ongoing basis, by trained lay counselors…this approach provides effective and continuing intervention exposure linking HIV treatment with prevention while deploying resources effectively.”

However, the counselling did not have any effect on rates of sexually transmitted infections (STIs).

A significant proportion of people taking ART in South Africa do not achieve an undetectable viral load. In addition to the potential impact on their own health, these patients remain potentially infectious and could pass on HIV during unprotected sex.

An international team of investigators wanted to see if HIV prevention counselling delivered during routine care reduced rates of unprotected sex among people receiving ART.

They therefore designed a study involving 1891 people who received care at 16 sites in South Africa between 2008 and 2010. Half the sites were randomised to provide prevention counselling during clinical visits; the others standard of care. Prevention counselling was provided by trained lay counsellors. The counselling was based on an intervention called Options that had previously been shown to reduce sexual risk taking among people living with HIV in the United States.

The aim of the study was to see if counselling reduced the number of sexual events without a condom in the past four weeks with a partner of any HIV status. Data were also gathered to determine if the intervention had an impact on rates of unprotected sex with partners who were believed to be HIV-negative or were of unknown HIV status. Assessments were conducted at baseline, month 6, month 12 and month 18. Participants in the study were also screened at baseline and at regular intervals during follow-up for penile/vaginal bacterial STIs.

At baseline, the participants had a mean age of 37 years. Approximately two-thirds had been taking HIV therapy for less than two years, 30% had a CD4 count below 200 cells/mm3 and a quarter had a detectable viral load.

During follow-up, the reported number of unprotected sex acts with partners of any HIV status during the previous four weeks declined significantly in both arms of the study. However, the magnitude of the reduction was greater in the intervention arm (p < 0.002). Results favoured the intervention arm at all follow-up points.

People in the intervention arm were also significantly less likely to report recent unprotected sex with an HIV-negative partner or partner of unknown status (p < 0.0001).

“The findings support the efficacy of our intervention for reduction of HIV risk among HIV-infected South Africans on ART,” write the authors.

Despite these apparent differences in sexual risk behaviour, approximately 7% of people in both study arms were diagnosed with an STI during follow-up.

“Our intervention provides effective, efficient, continuing support for HIV risk reduction among HIV-infected South Africans on ART,” the researchers conclude.


Fisher JD et al. HIV prevention counseling intervention delivered during routine clinical care reduces HIV risk behavior in HIV-infected South Africans receiving antiretroviral therapy: the Izindlela Zokuphila/Options for Health Ranomized Trial. J Acquir Immune Defic Syndr, online edition. DOI: 10.1097/QAI.0000000000000348 (2014).

Share this

'I Still Have Sex, Even With HIV' 04/10/2013

Two young people speak out about life, and love, and the very real risk of rejection writes Ina Skosana of the Mail and Guardian


Phindile Sithole-Spong says that while being HIV positive is hard because of the stigmas surrounding the disease, but she remains hopeful of starting a family one day. (Clarissa Sosin)

"As a young person, coming out about your HIV status to anyone is an emotional thing," says Phindile Sithole-Spong. 

She's wearing a long, blue-grey floral dress. Her make-up is done carefully. And she's confident. 

"It's a stressful journey and I feel like a lot of the time people undervalue how strong you have to be and how prepared you have to be because it's not something you take lightly," she says. "The possibility of rejection is so real."

Sithole-Spong has everything going for her. She owns her own media company. She loves a glass of good red wine and she can cook up a storm. She's been a youth ambassador to a United Nationals conference in Washington, DC.

She's come a long way.

When she was 19, she discovered that she had been born with HIV after she fell ill and landed in hospital. 

 "It was quite traumatic for me; not only the fact that I was HIV positive but [also that] I had a really low CD4 count [a measure of the strength of the immune system. The higher it is, the healthier the person is. A normal CD4 count is between 400 and 1600, according to online HIV information service Aidsmap]. 

"My CD4 count was two, so I had full-blown Aids at the time," she recalls, sitting in a sunny room at the Parkhurst home in Johannesburg, she shares with her adoptive mother. Her biological mother died when Sithole-Spong was eight years old. 

"I had heard about HIV and seen the campaigns. But I never ever thought it would happen to me. I thought I had been educated enough about it; it was never something that came up," says Sithole-Spong. 

"Finding out was emotionally and physically exhausting." 

Having had only one sexual partner at the time, Sithole-Spong was catapulted into a world of confusion, wondering how she could have been infected. She told her boyfriend that she was HIV positive just hours after she found out. His test came back negative. Doctors then realised that she had been born with HIV.

"Even though he was comfortable with it and was there for me, our relationship ended because I was struggling to come to terms with my status," she says. "HIV is not just a physical manifestation but it's psychological as well and it does take a toll on you – whoever you are."

Sithole-Spong says she took "time out" from dating to "deal with the emotional implications" of living with HIV before venturing into her next relationship. She had decided early on that she would tell everybody she got involved with about her status. Fortunately, she had the "luxury of having doctors who spoke openly" to her about disclosing her status and supported her.

When she was in her second year at the University of Cape Town, Sithole-Spong publicly disclosed her status at an event hosted by the institution. 

"I dont think my love life has changed much at all; I guess because I'm so public with my status. People already know [I'm HIV positive] before they meet me," she says. 

"The sooner someone knows, the better for both of you. Its not like you stop having sex when you find out you are positive." 

According to the World Health Organisation, the risk of HIV transmission in serodiscordant relationships, in which one partner is infected with HIV and the other is not, is significantly reduced when the HIV-positive partner is on antiretroviral treatment, regardless of their immune status. HIV treatment is usually only introduced once the immune system is below a certain point. 

Normal love life "elusive"
However, a counsellor with the HIV organisation loveLife, Dorcas Mshayisa, says although "antiretroviral therapy reduces the risk of transmission to a sexual partner, what is considered a normal love life remains elusive [for people living with HIV]. 

"Support groups play an important role in educating and giving support to people who are living with HIV. Ongoing counselling and having conversations with your partner help one to accept his or her status and to love the person for who they are, not what they have."

But Sithole-Spongs choice to speak candidly about her status and her sexuality has drawn some criticism. She says she has been confrontated by people who believe that it is wrong of her to have sex or engage in "normal people behaviour". 

"If people dont take it well I dont take it personally, I dont hate or dislike them for it because I understand that a lot of people dont understand the virus. And people normally fear what they dont understand.

"I think some of the biggest fears people have about going into a relationship with someone who is positive is getting infected with the virus and the stigma around HIV. Because stigma doesn't only happen to the infected person, it also happens to the people around you. 

"So if you are dating someone who is HIV positive, people might deduce that you must be positive too," she says. Some relationships end because families or communities oppose them. 

Sithole-Spong says that it is often the people living with HIV who isolate themselves because they think their communities won't accept them.

"The biggest problem with stigma is self-stigmatisation and I think that's really where it starts. People who live with HIV are the ones to judge themselves first by thinking they are not good enough to date someone who's negative. I think it's the HIV community itself that has a problem with the virus.

"I also have my moments of insecurity about my status and sometimes you just need or want someone who understands that there are ups and downs," she says.  

Romantic by nature
But there is little that can keep this self-confessed romantic down. 

"I would love to get married someday and have a soccer team of kids and the course of my treatment has been geared towards me having children. I want a big family and it's a very real possibility."

The dream of finding true love is shared by American singer and HIV activist Jamar Rogers, who has been living with HIV for seven years. He made headlines last year when he disclosed his status on the singing reality show The Voice. 

                                                                                                          ( Jamar Rogers (Madelene Cronjé))

Rogers spoke to Bhekisisa about love, life and living with HIV while in South Africa earlier this year. 

"Dating is probably one of the hardest factors of living with HIV," he said. "That moment when you decide to tell that girl or that guy that youre interested in that you are HIV positive your stomach clenches up, your hands get clammy and theres a fear of rejection there. 

"There's always that risk that theyre not going to be cool with it – that they're going to freak out. And they may smile and say that it's okay and then never call you again. These are all instances that I have faced."

He said that, although American society is advanced about a lot of things, HIV isn't one of them as it is considered to be a virus that mainly affects homosexuals and drug addicts. This made it difficult for him to talk about his status.

When Rogers found out at the age of 24 that he was HIV positive he had a CD4 count of five and Kaposis sarcoma [an Aids-related cancer]. 

Wake-up call
The 32-year-old said that being diagnosed with HIV was the wake-up call he needed to clean up his life. It was at that point, he said, that he called his mother and asked her to help him to get his life back on track.

"I was an avid crystal meth user. I started using at the age of 18 and because of my drug addiction, I wasn't just sharing needles, I was also into prostitution," he said.

"I was definitely living a very high-risk lifestyle but when the doctor came back and told me I had HIV, I was completely shocked. I don't know why I thought that I was discounted from that."

Rogers said that, before falling ill, he had only been tested for HIV once despite the fact that he was in a relationship at the time. 

The World Health Organisation estimates that only 40% of people with HIV know their status. The organisations figures show about half of HIV-infected people in long-term relationships have HIV-negative partners. According to loveLife, most new HIV infections occur among young adults and adolescents. 

The United Nations National Programme on HIV and Aids report says that 35.3-million people were living with HIV in 2012, "an increase from previous years as more people are receiving the life-saving antiretroviral therapy". 

Released this week, the report states that new infections had decreased by 33%, from 3.4-million in 2001 to 2.3-million in 2012. The number of Aids-related deaths was 1.6-million, down by 30% since 2005.

The report found that the persistent stigma around the epidemic delayed HIV testing and encouraged nondisclosure to partners. 

loveLifes Mshayisa said the stigma also posed a challenge to HIV treatment and prevention efforts. However, she said, as HIV services improve and the disease proves to be manageable, "attitudes will change, and denial, stigma and discrimination will rapidly be reduced".

Rogers said he believed that, over time, people will come to terms with the epidemic and those who are HIV positive will see that "as long as they take care of themselves they can have a healthy dating life, a successful career and even start a family".


Share this

Harsh Price of HIV-linked Longevity 04/10/2013

HIV+ people on ARVs are now living longer lifespans. But the virus's associated diseases could put an unbearable strain on the health system. writes Amy Green of the Mail & Guardian 


People living with HIV are mostly scrupulous about getting check-ups. (Delwyn Verasamy, M&G)

Research studies show that people with HIV who are on antiretroviral (ARV) treatment now live almost as long as their HIV-negative peers.

But this gain in life years also has a downside: it has put HIV-infected people at risk of developing non-communicable diseases (NCDs) such as diabetes, heart disease and high cholesterol, which normally only appear in older people.    

There is an "extra epidemic" on the horizon, according to the health department's head of noncommunicable diseases, Melvyn Freeman.

"People over the age of 45 have a higher risk of developing these conditions and many people with HIV now live far beyond that age."

According to Freeman, if NCDs are not addressed properly, the financial cost to the health system will be "massive".

A 2011 paper, published in the medical journal Aids, estimated that HIV prevalence (the proportion of a population with HIV at a designated time) in people over 50 will "nearly double in the next 30 years, whereas the fraction of HIV-infected patients aged over 50 years will triple in the same period".

Freeman said it's expensive to treat chronic conditions such as NCDs.

"For example, once you need hypertensive medication, you're probably going to need it for the rest of your life. One pill may be cheap but a lifetime of medication is extremely expensive."

Weight sensitive
The longevity of HIV-infected people may be compromised by the generally unhealthy lifestyles of South Africans, resulting in them getting fat, said Francois Venter from the Reproductive Health and HIV Institute at the University of the Witwatersrand. "We have some of the highest rates of obesity in the world," he said.

Obesity, especially a disproportionate accumulation of fat around the abdomen, places one at a much higher risk of developing a number of medical conditions, including diabetes and cardiovascular disease, according to Jeffery Wing, a medical doctor and diabetes expert working at Charlotte Maxeke Hospital.

He said that this is often more pronounced in people living with HIV as they are very "weight sensitive" because being underweight is a well-documented side effect of being infected with the virus.

"They tend to push the calories more than patients without HIV."

The Human Sciences Research Coun­cil's 2013 health and nutrition survey revealed that almost half of South African women are obese (40.1%) and 11.6% of men. 

Apart from the fact that people with HIV are living longer and therefore may develop age-related illnesses, there is also a body of research emerging that suggests that HIV medication, as well as the virus itself, may put HIV-positive individuals at a higher risk of developing some chronic conditions than the general population and at a younger age.

According to a Chris Hani Bara­gwanath doctor and researcher, Colin Menezes, the ARV drug, Stavu­dine, is associated with the early onset of several NCDs.

Opportunistic infections
"What I saw [in my study] was the metabolic consequences - things we're concerned about - like diabetes and dislipidemia [high cholesterol]," he said.

Stavudine, also known as d4T, was part of the state's first-line regimen until 2010, when the country adopted the World Health Organisation's guidelines to substitute it for the less toxic drug Tenofovir.

However, when public-sector clinics run out of Tenofovir - there have been many documented stock-outs this year - patients receive Stavudine as a replacement, Menezes said.  According to him, patients with kidney failure are also switched to Stavudine.  

Menezes said, although he is seeing fewer cases of opportunistic infections like tuberculosis (TB), he's seeing more patients as a result of "the side effects of ARVs, and clinicians and patients should be aware of this".

Thandi Nyawo, a secretary from Mpumalanga, took Stavudine for six years and developed a common side effect - fat in the body is redistributed largely around the waist, making it disproportionately large. After four years on Stavudine, she was diagnosed with diabetes but doesn't know what caused it.

"[The doctors] don't know [what caused my diabetes]; they say maybe it's a family thing but at home no one has got diabetes. Just me," she said.

According to Wing, "about 30% of patients on ARVs get it [fat redistribution], which we know is a very strong risk factor for developing diabetes."  

Insulin resistance
Because Nyawo does not have a family history of diabetes, which would make her more vulnerable to the condition, Stavudine could "very possibly" have caused her diabetes,  Menezes said.

Although Stavudine has been associated with much of the weight redistribution side effect, Wing said other ARVs, particularly protease inhibitors that are used in second-line treatment, can also cause it. Patients go on second-line treatment once they have become resistant to the initial regimen.

HIV itself, because it is an inflammatory condition, can also place one at risk of developing diabetes, according to Wing.

"Inflammation produces inflammatory molecules, which cause insulin resistance in the various tissues, so poorly controlled HIV is also associated with a higher diabetes risk."

However, Venter cautions that this is a "theoretical area" of research.

"It's possible [that HIV, ARVs or a combination of the two can elevate the risk of developing NCDs] but we don't know for certain what the impact of HIV is going to be on these diseases, other than the fact that people are living longer and are, therefore, more likely to get them."

According to Freeman, diseases lower the body's resistance to fight off other illnesses. "So diseases in themselves are mechanisms which change the body's way of dealing with other sicknesses."

Exact mechanism

For example, studies have shown that diabetic patients are three times more likely to contract TB but the "exact mechanism" through which this happens is still not clear. A TB patient is also at a higher risk of developing diabetes.

According to the World Health Organisation, South Africa has the third-highest TB burden in the world, with more than 70% of TB patients also living with HIV.

But, said Venter, being HIV positive and on treatment could also be an advantage regarding NCDs. He said there is an "absolutely fascinating development": where people living with HIV are actually living longer in some countries because they are managing all of their conditions better than the general population.

"There are studies in the Unites States, Europe and Uganda which show that patients are actually getting [their NCDs] sorted out earlier rather than later and are doing very well."

According to Venter, the average HIV-negative person doesn't access health services often enough to detect these conditions at an early stage before complications arise.

"Personally, I never get my cholesterol or blood pressure checked when I'm supposed to but, once you're in the healthcare system getting your ARVs, checking these things is really easy."

Wing said that, because HIV-infected individuals will soon qualify for drugs when their CD4 count (a measure of the strength of the immune system) is below 500 (unlike the current threshold of 350), many more patients will be on treatment, which will significantly increase the costs to the health system.

"The same concept is being applied to diabetes so young prediabetic patients may qualify for drug treatment earlier rather than just be advised to change their lifestyles."

Freeman said that the government can only do so much and that patients need to take some responsibility for their health.

"The minister has said that, if the National Health Insurance system is going to work, we need a healthy population. HIV is a massive burden on the fiscus. You don't give antiretroviral therapy for a year or two; you give it for life. Unable to afford user fees or to reach faraway health centres, the same is true for NCDs. You can just imagine the burden chronic diseases place on the health system."  

Share this

Multivitamin-Selenium Combo May Delay Ill Health, Mortality From AIDS When Antiretrovirals Are Unavailable - 29 Jan 2014

This article was reported by Harvard School of Public Health News.

Harvard School of Public Health (HSPH) News reported on a study of a special multivitamin with selenium that could slow progression to ill health significantly in HIV-positive individuals. HSPH researchers studied the effect of multivitamins on the health of HIV-positive persons since they tend to have deficiencies in micronutrients such as B vitamins, vitamin C and E, thiamin, riboflavin, niacin, and folic acid. The lack of these substances may hasten disease. Also, the trace element selenium helps support the immune system.

The researchers, including Richard Marlink, executive director of the HSPH AIDS Initiative and the Bruce A. Beal, Robert L. Beal, and Alexander S. Beal Professor of the Practice of Public Health at HSPH, followed up on a 2004 Tanzanian study. The Tanzanian study suggested that HIV-positive pregnant women who took a certain multivitamin remained healthier longer than those who did not. These women were in different stages of HIV before antiretroviral treatment (ART) was available to them. The researchers conducted a new randomized, controlled study from 2004 to 2009 in Botswana with 878 HIV-positive women who were not pregnant and men who had never been treated with ART. The researchers divided participants into four groups; each group received either a multivitamin alone, selenium alone, a combination of multivitamins plus selenium, or placebo.

Results showed that participants who received the multivitamin with selenium had an approximately 50-percent reduced risk of getting sick or dying from AIDS during the 24 months of study, and they were more likely to have higher CD4 counts. Marlink warned that multivitamins should not be considered a substitute for ART for persons with low CD4 counts, as ART is very effective in maintaining health and preventing AIDS for a very long time. He explained that depending on the African country, only approximately half of the need for ART has been met, so anything else that can be done for the HIV-positive individuals who do not yet have access to ART is helpful.


The full report, "Effect of Micronutrient Supplementation on Disease Progression in Asymptomatic, Antiretroviral-Naive, HIV-Infected Adults in Botswana: A Randomized Clinical Trial," was published in the Journal of the American Medical Association (2013; 310(20):2154-2163 doi:10.1001/jama.2013.280923)

Share this

Studies Reveal Health Benefits of Vitamin D in TB and HIV. 4/9/2012

by Jessica Berman

Voice of America

New research suggests that mega-doses of vitamin D, the so-called “sunshine vitamin,” may help fight both tuberculosis and reduce the risk of death from HIV, the virus that causes AIDS. 

An estimated 1.5 million people die each year of tuberculosis amid concerns that the disease is rapidly becoming drug resistant.  Now, a new study suggests TB treatment could be significantly enhanced with the addition of vitamin D to the regimen.

Researchers at Queen Mary University in London studied 95 tuberculosis patients.  All received the standard antibiotic treatment, but some were given a supplement of a very high dose of Vitamin D, about 10 times the average dose.

Investigators led by Adrian Martineau found that the TB bacterium cleared from those in the vitamin D group in an average of 23 days - approximately two weeks sooner than those on antibiotics alone.

Martineau says vitamin D - the so-called 'sunshine vitamin' - appears to bolster the body’s natural defenses. 

“But a second and interesting effect is that vitamin D also dampens down potentially harmful inflammatory responses in the lung that’s been implicated in lung damage," said Martineau. "So, it also accelerates healing of cavities caused by the TB bug.”

The tuberculosis bacterium causes cavities to form in the lungs in response to inflammation, which is part of the body’s immune response.  The microbe hides in these pockets.  Martineau suggests that reducing inflammation helps heal the cavities more quickly, causing less lung damage and helping patients clear the infection in a shorter period of time.

Before antibiotics, TB patients underwent so-called heliotherapy or “forced sunbathing” to increase their levels of vitamin D.  Martineau’s finding appears to validate the old-fashioned therapy.

“We’re very excited about these positive results," he said. "But what we need to do now is go ahead and repeat the study in a larger number of patients.  And if that also shows a positive effect, then we could be in a situation where we could begin to start recommending adjunctive vitamin D in tuberculosis treatment.”

Vitamin D levels have been shown to be reduced or very low in individuals with a number of chronic ailments, including AIDS.

In another new study, researchers in Tanzania report that HIV-positive individuals with vitamin D deficiency became sicker and were twice as likely to die as those with sufficient or normal levels.  The researchers looked at vitamin D levels in 1,100 men infected with the AIDS virus between 2006 and 2010.  

Their study on HIV and vitamin D was published in the journal PLoS One.  An article by Adrian Martineau and colleagues on the treatment of tuberculosis with supplemental vitamin D can be found in Proceedings of the National Academy of Sciences. 

Share this

The Fire Within: Research on Two Supplements Addresses HIV-Driven Inflammation in the Gut. 31/10/2013

Probiotic Supplementation Could Potentially Decrease Resistance, Micronutrient Deficiencies, Viral Replication and Immune Suppression

Gastrointestinal (GI) health is proving to be a vital, though often ignored, component of HIV infection. Recent research presented at the 7th International AIDS Conference on HIV Pathogenesis, Treatment and Prevention (IAS 2013) that took place this past July in Kuala Lumpur, Malaysia showed that microbial translocation and the damage done to gut-associated lymphoid tissue (GALT) during primary HIV infection has a dramatic effect on the pathogenesis of HIV, including the disruption of microflora, resulting in ongoing and damaging inflammation. While more research on the effects of HIV on the GI system is sorely needed, the consequences of sequestration on the National Institutes of Health (NIH) budget, along with the growing competition to prioritize directions in therapeutic investigation, ranging from viral host restrictive factors to preventive vaccines, makes putting anything else on the table an enormous challenge.

The data being presented on addressing microbial translocation, HIV-associated enteropathy and gut inflammation is compelling. HIV-associated enteropathy often accounts for diarrhea and malabsorption in patients who lack an identifiable cause and includes mucosal dysfunction as a defining characteristic. HIV-associated enteropathy results in microbial translocation and subsequent chronic inflammation as well as malabsorption, which may result in drug resistance.

HIV-associated enteropathy affected a high percentage of people with HIV in the pre-HAART (highly active antiretroviral therapy) era and continues to be a problem for some even in the presence of HAART. HIV-associated enteropathy can cause weight loss and structural and functional damage to the GI tract. Despite effective treatment with HAART, it continues to be drastically underestimated.

The only available drug for HIV-related non-infectious diarrhea is Fulyzaq. Fulyzaq, made by Salix Pharmaceuticals, was approved by the U.S. Food and Drug Administration (FDA) in 2012. In a 374-patient study, incidences of diarrhea were reviewed over a 20-week period. Results found that 17.6% of patients taking Fulyzaq had two or less watery bowel movements per week compared to only 8% of patients on placebo. Fulyzaq was found to be less effective in African Americans who participated in the study. Due to continual production issues, this drug is not widely available and appears to only help a small number of people.

Few other potential treatments for HIV-associated enteropathy are currently being studied despite the great need for interventions. One study, however, that showed promise was published in the journal AIDS (Asmuth et al., 2013) and presented at the 19th International AIDS Conference (AIDS 2012) last July in Washington, DC and the 20th Conference on Retroviruses and Opportunistic Infections (CROI 2013) in March of this year in Atlanta, GA. Dr. David Asmuth reported on a pilot study of the effects of serum-derived bovine immunoglobulin / protein isolate (SBI), EnteraGam, made by Entera Health, on patients with HIV-associated enteropathy. According to previous studies in porcine and murine models, EnteraGam has been shown to improve gut health and function and reduce markers of inflammation.

All eight participants in this study were on HAART. Administration of EnteraGam improved GI absorption and increased the density of CD4 T lymphocytes in GALT. Although markers of microbial translocation remained unchanged, D-Xylose, a direct measure of proximal small bowel function, suggested improvement in diarrhea in seven out of eight study participants. The utility of EnteraGa was significantly associated with increased intestinal CD4+ cell counts and function and demonstrated evidence of intestinal repair in patients experiencing HIV-associated enteropathy. A longer, larger, blinded study is said to be forthcoming on this medical food.

Another approach to addressing HIV-associated enteropathy is the utility of probiotics. AIDS Healthcare Foundation (AHF) conducted a study on GanedenBC30 that found that supplementation with the probiotic increased CD4+ cell counts.

"We are learning more and more about the interaction between our gut and our immune system. It is such complex machinery that keeps bacteria inside the intestines and, in a majority of the cases, very tightly controlled. Occasionally it gets out of control and that's why people get illnesses. There is more and more evidence that most likely some fragments of bacteria occasionally escape -- they make their way to our systemic circulation, our bloodstream -- and, of course, being a foreign object, the body will try to attack it and neutralize it. That leads to inflammation," Dr. Homayoon Khanlou, M.D., chief of medicine at AHF and lead investigator of this pilot study, stated in an article which appeared in A&U magazine.

Inflammation in the gut can cause bone loss and probiotics can improve bone density. A new study from Michigan State University sponsored by the NIH published in the Journal of Cellular Physiology found that probiotic supplementation utilizing lactobacillus reuteri, a probiotic shown to reduce inflammation, produced healthier bones. Lead author Dr. Laura McCabe, professor of physiology and radiology at Michigan State University, said, "We know that inflammation in the gut can cause bone loss, though it's unclear exactly why."

Studies by the AIDS Clinical Trials Group (ACTG) on new interventions for HIV-associated enteropathy, as well as other HIV associated GI conditions are long overdue. With the formation of the Delaney AIDS Research Enterprise at the NIH, the opportunities to advance research on gut inflammation, its effect on HIV pathogenesis and HIV's mechanisms for evading viral host restrictive factors have never been better.

With more data being generated on interventions such as EnteraGam and GanedenBC30 in HIV patients, the real question confronting state legislators is ensuring access to care by implementing exception to policy in public health insurance programs such as Medicaid. These supplements could be made available to patients through state enteral formularies. In these times of sequestration, cost-effective measures are of more importance than ever. Therapeutic supplementation has proven to be among the best of these interventions.

An unspoken complication of HIV-associated enteropathy is the disruption in treatment pharmacokinetics, which is the difference between successful and unsuccessful treatment. As the efficacy of these drugs is dependent upon nutritional status, the subsequent malabsorption results in varying levels of the drug in the blood that could predictably result in treatment failure.

HIV-associated enteropathy may be one of the driving factors behind the deeply disturbing data presented at AIDS 2012 by the U.S. Centers for Disease Control and Prevention (CDC) that three out of every four people living with HIV in the U.S. are not able to achieve durable viral suppression. Addressing this alarming condition in a cost-effective manner is of critical importance to achieving widespread viral suppression, which in turn would decrease the number of new HIV infections.

Share this

Lack of Housing Most Important Health Risk for People with HIV. 1/5/12

A march for AIDS housing at the 2008 International AIDS Conference in Mexico City

1 May 2012

A new study shows that housing and food are the biggest predictors of health than for people with HIV.

The study was conducted by University of California at San Francisco on 288 homeless men with HIV over a six year period (a similar study was done last year with homeless women and had similar results).

The SF Gate reported on the research study, and noted “Lacking basic necessities had a larger negative health effect than drug abuse, the virus in their blood or lack of treatment. Even among patients who were getting drug therapy for their HIV, the effects of being homeless offset most of the positive effects of treatment. But for many very poor patients, being homeless keeps them from getting consistent drug treatment at all.”

This study, which reflects what many AIDS activists have been saying for years, contradicts the recent NYC HASA policies. HASA’s new policy calls for people who fail a drug use assessment to go through drug treatment or be denied access to permanent housing benefits through HASA. Because you have to have an AIDS diagnosis to get HASA assistance, people who may be already facing the most serious health challenges can be denied housing if they are not ready or able to go through treatment.

More and more, NGOs, governments, local health departments and some activists are advocating for people to start HIV treatments as soon as they are diagnosed. Housing Works believes people should begin treatment when they are ready and able. It also seems that as long as AIDS remains mostly a disease of the poor in the US, any strategy to ending the epidemic has to prioritize housing.

The study concludes that “Impoverished persons will not fully benefit from progress in HIV medicine until these barriers are overcome, a situation that is likely to continue fueling the US HIV epidemic.”


Share this

Long-term Use of HIV Drugs is Safe, Does not Raise Risk of Death, Study Shows. 8/12/11

It is now well recognised that effective antiretroviral therapy has significantly improved the life expectancy of many patients with HIV


By Michael Carter
8 December 2011

A large international study has provided persuasive evidence of the long-term safety of antiretroviral therapy. Writing in the online edition of AIDS, investigators from the EuroSIDA study report that prolonged use of antiretroviral therapy did not increase the risk of death from non-AIDS-related illnesses.

“The main finding of our study was that there was no evidence of an increase in the risk of any non-AIDS-related death with prolonged exposure to cART [combination antiretroviral therapy],” comment the authors. “The results are reassuring that so far prolonged use of cART does not appear to be leading to increased risk of death due to some previously identified cumulative effect, or a drug effect whereby there is a long induction period before disease appears.”

It is now well recognised that effective antiretroviral therapy has significantly improved the life expectancy of many patients with HIV.

However, all anti-HIV drugs can cause side-effects, and treatment with some has been linked to an increased risk of cardiovascular disease or kidney dysfunction. Whether prolonged treatment with antiretroviral therapy carries an increased risk of death from these and other diseases is currently unclear.

Therefore investigators from the EuroSIDA cohort study looked at the outcomes of approximately 12,000 patients who received potent combination antiretroviral therapy after 1996.

These patients were categorised according to the duration of treatment (under two years; two to three years; four to six years; six to eight years; and over eight years).

Overall mortality incidence was then calculated according to treatment exposure, as was the incidence of AIDS-related and non-AIDS-related deaths. The investigators adjusted their results to take into consideration factors known to independently affect prognosis including demographics, HIV risk group, co-infection status, CD4 cell count and viral load, and previous history of AIDS-related illnesses.

During 70,000 person years of follow-up, a total of 1297 patients died. A little over two-thirds of deaths (68%) were attributed to non-AIDS-related causes.

AIDS-related mortality accounted for 32% of all deaths. The investigators attributed 9% of deaths to non-AIDS-related infections, 14% to liver-related causes, 10% to non-AIDS-related cancers, 9% to cardiovascular causes, 7% to violence (including suicide) and 7% to other causes. In addition, 12% of non-AIDS-related mortality had an unknown cause.

Incidence of all-cause mortality was 18.3 per 1000 person years; AIDS-related mortality had an incidence of 5.85 deaths per 1000 person years; and the incidence of non-AIDS-related mortality was 12.5 per 1000 person years.

Further analysis showed that the incidence of all-cause mortality and AIDS-related mortality fell significantly as exposure to HIV therapy increased. However, the incidence of non-AIDS-related deaths remained broadly stable.

Each additional year of HIV therapy (after year two) was associated with a 5% reduction in the risk of all-cause mortality (p < 0.0001) and a 14% fall in the risk of AIDS-related deaths (p < 0.0001). The risk of non-AIDS-related deaths fell by 3% each year, a reduction that fell just short of significance (p = 0.06).

“Our analyses confirm the prolonged benefit of cART, with a 5% reduction in the overall risk of death per additional year on treatment, which was mostly attributed to a decrease in the risk of AIDS-related deaths.”

Prolonged use of antiretroviral therapy was also accompanied by a reduction in “the risk of liver-related death, violent, and unknown death.” The investigators speculate that the lower risk of violent death “could relate to stabilised health conditions, life-style changes or improvements in socio-economic status.”

However, longer duration of HIV therapy was accompanied by an increase in mortality attributed to non-AIDS-related cancers. The authors suggest this “may reflect aging of the HIV population…or improvement in cancer screening.”

They conclude: “It is clear that death due to accumulating treatment toxicities is a very uncommon event.”

Share this

HIV and Good Nutrition. 5/12/11

Good nutrition is especially important for people living with HIV,


By Siphosethu Stuurman
5 December 2011

Good nutrition helps keep your immune system strong and it’s especially important for people living with HIV, as it enables them to better fight the condition.

Loss of weight and loss of energy are common problems for HIV-positive people. But a healthy diet and exercise can help improve their quality of life.

 “It is more important for people living with HIV because HIV has a negative effect on nutrition. If the immune system is not functioning well, that gives HIV even more opportunities to multiply and cause illness in the body.  So, an HIV-positive person must take nutrition as a serious matter in their lives”, says Dr.  Limakatso Lebina, of central Johannesburg’s Zuzimpilo Clinic.

She says a balanced healthy meal does not have to be costly.

“The old African food is usually the best. Your pap and vegetables are good nutritious food.  A balanced diet consists of your carbohydrates, a big focus on vegetables and proteins… proteins does not necessarily mean meat. Your beans, peanuts, cheese, milk… that’s good nutritious meals. That’s not that costly”, says Dr. Lebina. 

She saysexercising is also important for HIV-positive people because they often lose weight, especially their muscle mass. On the other hand, she points out that obesity is also on the rise among HIV-positive people.

“Obesity is also a problem among HIV-positive people, as it is an increasing problem in South Africa.  It does not necessarily mean if you are obese you’re healthy and you have normal nutrition. Exercise is important to keep the body mass low and increase muscle weight.  Exercise does not have to happen in the gym. Working in the vegetable garden is exercising, walking the child to school, and just running up and down your house 30 minutes is exercising - as long as it is done regularly”, says Dr. Lebina.

Dr Lebina warned against a trend where HIV-positive people have deliberate intentions to gain weight.

“Unfortunately, the stigma that came with HIV is something that we’re still working on. 

It has always been thought that those that are thin are the ones that are HIV-positive and those that are fat and heavy-weight are the ones that are well. However, we all know that you cannot diagnose HIV by looking at the person”, says Dr. Lebina. 

Frieda Nxisana, a nursing manager at Cotlands, a safe home for HIV-positive and abandoned children, warned against eating fatty foods. She says foods that are high in fat prevent antiretroviral medication from working.

“When you give a child a diet that is high in fat, that fat will prevent the ARVs from being absorbed in the stomach”, says Nxisana.

She also warned againstconvenience foods, saying that they may contribute to the HIV disease progression.

“In our community we have kotas.  A kota is bread that they put chips and achaar in.  All these things have fat and fat prevents the absorption of ARVs.  But if you can take that bread and put beans inside and serve it like that, a person gets a nutritious meal instead. A snack of a fruit is much better than a snack of chips. And also drinking water is the best, especially for children… plain water is the best”, says Nxisana. 

Nxisana advised families with HIV-positive people to buy nutritious meals that can be enjoyed by everyone in the family, including children. 

“Whatever diet you put together, it’s easy when it’s a diet that can be eaten by an adult as well as a child. For example, Nespray milk… an adult can take Nespray in her tea, and a child will take Nespray as a drink”, says Nxisana.

Share this

Life Expectancy on HIV Treatment Improving, shows Importance of Prompt Diagnosis and Treatment. 12/10/11

The life expectancy of patients receiving antiretroviral therapy in the UK improved significantly between 1996 and 2008


By Michael Carter
12 October 2011

The life expectancy of patients receiving antiretroviral therapy in the UK improved significantly between 1996 and 2008, research published in the British Medical Journal shows. Patients who initiated HIV therapy when their CD4 cell count was in the region of 350 cells/mm3 had an average life expectancy of approximately 75 years.

However, starting HIV therapy with a CD4 cell count below 200 cells/mm3 was associated with a poorer prognosis, highlighting the importance of improved HIV testing and the prompt initiation of therapy.

“Life expectancy is strongly related to the CD4 count at which individuals start treatment,” write the investigators from the UK Collaborative HIV Cohort (UK CHIC). “This highlights the need to identify people infected with HIV early in the course of their infection, before substantial CD4 loss has occurred.”

Results also showed that, overall, the average life-expectancy of patients with HIV was about 13 years lower than that for the general UK population. However, all the average life expectancy figures reported by the researchers necessarily include patients who started treatment late. This group of patients are known to have a worse prognosis.

HIV is now considered a chronic, manageable condition, and with the right treatment and care the prognosis of many patients is excellent.  Although several studies have examined mortality rates in the era of effective HIV therapy, few have examined how long patients with HIV can now expect to live.

“Estimates of life expectancy are important to individuals who want to plan their lives better, to service providers, and to policy makers,” explain the investigators. They therefore used data collected between 1996 and 2008 to estimate the life expectancy of patients who started HIV therapy when their CD4 cell count was below 350 cells/mm3, the current threshold for starting antiretroviral treatment in the UK.

The life expectancy of patients with HIV was compared with the life expectancy of the general UK population, and the investigators also calculated the impact of late initiation of HIV therapy on prognosis.

A total of 17,661 individuals aged 20 and above were included in the study. Most of the patients were men (75%), white (58%), and their median age was 37 years. Overall, 42% of patients started HIV treatment late – defined as a CD4 cell count below 200 cells/mm3.

Patients were followed for a median of 5 years, and during 91,203 person years of follow-up a total of 1248 (7%) of individuals died. The overall mortality rate was 13.7 per 1000 person years. However, this fell from 28.8 per 1000 person years in 1996-99 to 9.5 per 1000 years between 2006-08.  Improvements in HIV treatment in care over the period largely account for this fall in the mortality rate.

The investigators calculated that a 20-year-old receiving HIV therapy in 1996-99 would live on average a further 30 years. This life expectancy increased to 46 years in the period 2006-08.

Life expectancy for a 35-year-old was an additional 20 years of life in 1996-99, and 31 years in the period 2006-08.

However, prognosis differed by gender, and was significantly better for women than men. Overall, life expectancy for a 20-year-old woman was an additional 50 years compared to 40 years for men.

HIV-positive patients had a significantly shorter life expectancy than individuals in the general population. A HIV-negative 20-year-old woman would be expected to survive until she was 82 years old and an HIV-negative man until he was 78.

“Compared with the same sex in the general UK population, for patients undergoing treatment for HIV infection, life expectancy at age 20 was 18.3 years less for men and 11.4 years less for women,” write the investigators.

They note “the prevalence of smoking, drug misuse, and alcoholism are all higher among people with HIV, which leads to increased deaths from cardiovascular disease, cancer, liver disease, suicide, overdose and injury.”

But further analysis showed that starting HIV treatment promptly significantly improved prognosis – which approached normal levels for patients who initiated therapy at a level indicated by current guidelines.

Patients who started therapy with a CD4 cell count between 200 and 350 cells/mm3 had an average life expectancy of 75 years, but this fell to 61 years for individuals who initiated therapy when their CD4 cell count was between 199 and 100 cells/mm3 and to 58 years for those who started treatment with a CD4 cell count below 100 cells/mm3.

 “Patients should start antiretroviral therapy once their CD4 cell count has fallen below 350 cells/mm3,” emphasise the investigators.

“Life expectancy among people with HIV has considerably improved in the UK between 1996 and 2008, and we should expect further improvements for patients starting antiretroviral therapy now with improved drugs and new guidelines recommending earlier treatment,” conclude the authors. “The clear impact of low CD4 cell count on life expectancy implies that it is particularly important to diagnose HIV infection at an early stage.”


Share this

Serodisclosure: Experiences, Implications and Impacts. 16/8/11

This CAI paper reflects on the criticality of HIV status disclosure.

Consultancy Africa Intelligence

By Deanne Goldberg
16 August 2011

With an estimated 33.3 million people worldwide living with HIV, it is clear that treatment, care and prevention with regard to HIV & AIDS are imperative.(2) Endeavours to control and prevent further spread of the virus rely on the development and implementation of successful strategies to prevent infections and to ensure the treatment of currently infected individuals.(3) HIV serodisclosure has been identified as a critical aspect of HIV prevention, as well as treatment, care and support for those already-infected individuals.(4) As the pandemic continues to extend its reach, HIV positive individuals are often made to face serious decisions regarding serodisclosure throughout a number of areas of their lives.(5)

This CAI paper reflects on the criticality of HIV status disclosure. The character and process of disclosure are highlighted, as well as the nature of post-serodisclosure experiences and the manner in which these experiences can affect those who disclose and those contemplating doing so. The implications of failure to disclose are also noted.

Towards an understanding of the nature and process of serodisclosure

The relationship between those affected by and those infected with HIV is an important factor to consider when investigating serostatus disclosure. Implicit to this relationship is the fact that HIV is defined by its communicable nature - it has been called a “disease of society and human relationships”.(6) An awareness of the vectors for HIV transmission must therefore highlight the importance of communication and the disclosure ideally associated therewith. The value of these factors cannot be underestimated and therefore, the ability to safely and accurately communicate one’s serostatus to the appropriate parties must be carefully and critically appreciated. Research has described the disclosure of serostatus as a core component of access to treatment and management programmes, for generating behaviour changes and, in some instances, for decreasing levels of community stigma.(7,8)

Serodisclosure has been described as one of the most complex experiences for a person who has been diagnosed with HIV. Receiving a seropositive test result can be a life-changing experience and cause a paradigm-shift for which many are unprepared. In responding to this event, personal acceptance and personal disclosure skills must be considered.(9) Handled properly, this process is regarded as central to coping with the diagnosis and preventing further infection, as well as understanding and mitigating the effects of infection.(10) Disclosing one’s status can often be a critical point in accessing treatment, care and support programmes and structures.

Chaudoir and Fisher have pointed out that disclosure has the potential to affect behavioural, psychological and health outcomes, including illness progression.(11) However, it remains a complex decision with a number of implications. Benefits to disclosure certainly exist, but there are considerable barriers to serodisclosure which must be considered as well. However, before these are discussed it is important to understand the initial setting for guiding disclosure choices.

Laying the groundwork: Encouraging disclosure in the HCT setting

Within the context of HIV counselling and testing (HCT), a distinct emphasis is placed on encouraging and supporting seropositive clients in disclosing their status, especially to their sexual partners - both current and previous.(12) The Joint United Nations Programme on HIV & AIDS (UNAIDS) and the World Health Organisation (WHO) have consistently promoted education around disclosure as a core component of post-HIV-test counselling sessions; they recommend that disclosure should be guided by ethical imperatives in order to maximise the potential outcomes for those infected as well as those affected.(13) The recently released Global Health Sector Strategy on HIV/AIDS 2011-2015 hassuggested scaling up support for rights-based testing and counselling services in an effort to ensure prevention and early diagnosis, and appropriate referrals so as to create culture of safe disclosure of HIV status.(14)

To encourage disclosure, one must therefore proceed with sensitivity. However, the process of serodisclosure has been described as a possible double-edged sword for many individuals,(15) with benefits, barriers and complications characterising the process.

Benefits of disclosure

There are a number of public and personal health benefits of serodisclosure. Upon finding out the infected person’s serostatus, sexual partners of the infected person may elect to undergo HCT, and change their behaviours, which may prevent further infections.(16,17) Disclosure also has the potential to encourage other health behaviours such as participation in programmes to prevent mother-to-child transmission, and improved access to treatment services and support networks.(18)

Despite the risk of adverse reactions, research has shown that in the majority of cases, seropositive people will disclose their status to at least one person.(19) A South African study found that 92% of participants had disclosed their serostatus to one person.(20) Similarly, in an Ethiopian study, approximately 94.5% of participants had disclosed their status to at least one person - although this was not always a sexual partner.(21)

A number of studies have shown positive outcomes towards serostatus disclosure. These include reports of increased levels of social support, acceptance and kindness experienced by those who disclose.(22) Additionally, depressive and anxiety-related symptoms were reported to decrease upon disclosure with positive outcomes.(23,24)  An interesting proviso is made in some cases where it has been suggested that the benefits of disclosure for the seropositive person should be weighed against the potential outcomes in deciding to disclose.(25) This should guide understandings of all disclosure decisions.

Barriers to serodisclosure and negative serodisclosure experiences

Studies among women in sub-Saharan Africa have revealed that disclosure may be prevented or hampered by a fear of a partner’s negative reaction including rejection, accusations of infidelity, loss of economic support, abandonment, and acts of violence.(26,27,28) In a number of instances, this has indeed been the case.

Evidence has revealed barriers to testing and disclosure at the intersection of two epidemics - HIV and violence.  In 1998, a South African woman was beaten to death as a result of having publicly disclosed her HIV serostatus.(29)  In 2008 in Uganda, a man hacked his wife to death with a machete upon learning he had become infected with HIV.(30) Ten years separate these events, and yet despite the considerable advances that have been made in shifting negative attitudes and discriminatory practices towards those diagnosed and living with HIV, such violent acts were perpetrated on the basis of the victim’s serostatus alone. Research has suggested that post-test counselling support services should pay particular attention to those individuals living with abusive partners.(31)

In a study investigating the reactions of women receiving a seropositive test result, 38% of the sample responded with negative reactions including rejection, silence, denial, blame and physical violence. In the same study, two participants reported a significant fear of being physically abused should they disclose their seropositive statuses.(32) Similarly, a Tanzanian study found serodisclosure to lead to certain negative outcomes, including refusal of partners to be tested, family separations and abandonments, as well as suicide attempts.(33)

The decision to disclose is complicated and must be made in the context of risk reduction strategies. However, this decision is coupled with a significant risk of exposure to discrimination and stigma. HIV & AIDS stigma and discrimination have been identified as compromising the health and wellbeing of those living with the infection.(34) Research has indicated that a fear of stigma, discrimination and rejection lies behind numerous cases of non-disclosure to partners, families and employers. In some instances this may lead to a shameful existence which can influence attitudes towards the disease as well as treatment commitments.(35) However, with high disclosure rates it must be noted that among the positive benefits of disclosure is the fact that it may help to decrease stigma and discrimination in communities.(36) 

Additional factors influencing disclosure

There are a number of factors which can influence the manner of disclosure. Studies have shown that relationship-type may influence disclosure patterns, and it seems that disclosure is largely guided by concern for the health and well-being of partners.(37)

When assessing the impact of gender on disclosure rates, the abovementioned Ethiopian study noted that disclosure across genders followed from shared communication highlighted in relationships. Interestingly, while disclosure rates were similar across genders, reasons for non-disclosure did vary by gender. Where women feared violent retribution and socio-economic consequences for disclosure, men were characterised by a fear for their partners and of the exposure of infidelity.(38) In this study, men were encouraged to disclose by prior discussion as well as knowing their partner’s status, while for women, additional factors such as disease stage, level of education, marital status and the nature of the relationship guided disclosure decisions.(39)

Failure to disclose

In one South African study, 21% of respondents did not disclose their serostatus to their partners.(40) This means that approximately one in five participants did not elect to share their HIV status with their partners. The implications and consequences of such a failure to disclose are significant. Each person who does not know or disclose their status to a sexual partner creates the risk of an exponential number of new HIV infections as a result of this covert transmission.

Additionally, those who do not disclose their serostatus may be denied access to the support structures which enable an adaptive coping response to diagnosis. These could include family and community support systems. It must be noted, however, that many seropositive persons identify at least one person in their social networks to whom they do not plan to disclose. This has been attributed to a fear of rejection, stigma and a fear of isolation.(41)

Conclusion and recommendations

Serostatus disclosure is widely regarded as a central component of post-diagnosis adjustment and coping. Individuals may choose to diagnose their statuses either privately or publically, but ultimately the process of sharing the truth with another has been shown to be beneficial on a number of levels.

This paper has sought to touch on both positive and negative factors that may influence serodisclosure. As highlighted, anticipated post-disclosure events may, in some instances, act as deterrents from disclosing one’s status. However, anticipation of positive post-disclosure events may encourage individuals to share their statuses. Acknowledging and fostering such conditions may serve to create an environment that encourages disclosure.

Share this

HIV, Antiretrovirals and Aging. 1/7/11

No need to be alarmed by a study that received wide media coverage this week; benefits far outweigh the risks.

1 July 2011

People with HIV on antiretroviral treatment or at the point where antiretroviral treatment is recommended need not be alarmed by a study that received wide media coverage this week. Antiretrovirals save lives. Their benefits far outweigh their risks.

On Sunday 26 June scientists from Newcastle University in the UK issued a press statement explaining that they had found evidence that a class of antiretroviral (ARVs) called nucleoside reverse transcriptase inhibitors (NRTIs) could theoretically contribute to accelerated aging in people with HIV. Their paper was published in the prestigious scientific journal, Nature Genetics. The press statement was picked up by the SABC and was the top item on radio news on Sunday evening. It has subsequently received wide media coverage in South Africa and elsewhere.

We are concerned that this report has caused unnecessary anxiety in people with HIV who are taking ARVs or will soon be starting ARV treatment. NRTIs are a crucial part of ARV treatment regimens across the world, in both rich and poor countries.

The term accelerated aging refers to evidence that people with HIV may have higher rates of non-AIDS illnesses, such as heart disease, dementia, bone fractures and certain cancers than HIV-negative people of the same age.

The study examined 33 people with HIV under 50 and compared them to 10 HIV-negative people who were slightly younger on average. It found that people on NRTIs had a higher frequency of genetic mutations in their mitochondrial DNA of a type known to accumulate during normal aging in HIV negative people.1 The study does not show that NRTIs caused these mutations, but rather that in some study participants, use of the drugs was associated with an increase in their frequency above what would be expected among HIV negative people of similar age.

It is suspected by some scientists that the increased frequency of mutations in mitochondrial DNA that occurs as people get older plays a causative role in aging, but others believe they are a consequence of aging. As the Nature Genetics paper states: “it is still not clear whether the DNA mutations are a cause or a consequence of aging in humans.”

The study was very small and did not compare health outcomes between the study volunteers. A study like this cannot exclude the possibility that factors unrelated to HIV or ARVs were responsible for its findings.

People with HIV and their carers should be aware of the following:

   - The association between NRTIs and mitochondrial DNA mutations found in this study have been known since at least 1998.2 This study provides a small piece of evidence in an ongoing complex scientific discussion;

   - HIV itself causes damage to mitochondrial DNA.3;

   - Nothing in this study contradicts the fact that the benefits of ARVs far outweigh their risks;

   - If you live with HIV and your CD4 count is below 350 cells/mm3, delaying ARV treatment will almost invariably leads to an array of illnesses and ultimately death. However, by starting ARV treatment you are very likely to restore your health so that you are able to lead a full life with almost normal life-expectancy;

   - Studies show that people who have had a CD4 count below 200 cells/mm3 are more likely to have signs of accelerated aging than people who have started treatment before reaching this point;

   - The optimal CD4 count at which to start ARV treatment is not yet known, but there is clear evidence from clinical trials and observational studies that it is at least 350 cells/mm3. There is emerging evidence from observational data that starting ARV treatment with a CD4 count greater than 500 cells/mm3 is beneficial, but this is unclear and will have to be determined by clinical trials. Two clinical trials, START and TEMPRANO, are looking at this and will report results in the next two to four years;

   - There is clear evidence from the HPTN 052 trial that if you are on ARV treatment at any CD4 count below 550 cells/mm3, you will be less likely to infect your sexual partners;

   - ARVs, like all effective chronic medicines, have short and long-term side-effects. Accelerated aging is a concern for people with HIV and is a research priority. However, the extent to which HIV infection or ARV treatment is a cause of accelerated aging is an unresolved scientific question. If you are on ARV treatment it does not mean you are likely to age prematurely. If you are showing signs of accelerated aging, there are often medical interventions that can improve your quality of life;

   - To the extent that ARVs may be associated with accelerated aging, the Nature Genetics study indicates that this would be more likely to happen in people with complicated treatment histories. This is often associated with starting ART at a very late stage of HIV infection or having to switch regimens frequently because of side effects;

   - There are no implications for ARV guidelines for any country that follow from the Nature Genetics study.

In a statement below, we consider the Nature Genetics study in more detail.


Mitochondrial aging and NRTIs: a technical note

The study by Payne et al. examined 21 patients with a history of ART, 11 patients with HIV but who were still ART-naive and ten age-matched HIV-negative controls.6 Skeletal muscle was extracted from each of the subjects and examined for genetic mutations.

The study found that in the subjects with a history of ART, particularly NRTI use, there was a statistically significantly greater amount of mutated mitochondrial DNA than in the HIV-negative controls or ART-naive HIV-positive subjects. There was no difference between the latter two groups.

Eleven of the 21 patients on NRTI-containing ART had no signs of excess mutations over what would be expected among HIV-negative individuals of similar age (0.5 percent or less), including six subjects who had been on treatment for over five years (in one case, 10.5 years). Several more had very minor proportion of mutations. The “up to 10percent” figure cited in the study abstract is derived from one 45-year old individual with an extensive treatment history and more than 13 years since diagnosis who showed evidence of mutations in 9.8 percent of muscle cells. The authors noted health problems in four of the people on ART.

Most of the contribution to the statistically significant result came from three patients with long and complicated treatment histories, i.e. many ARV switches over many years.

The study was not set up in a way to examine the link between these mutations and clinical signs of aging so the relevance of these findings to clinical aging is unclear.

The finding that NRTIs are responsible for mitochondrial mutations is not new. In a 1998 paper in the journal AIDS, titled Adverse effects of reverse transcriptase inhibitors: mitochondrial toxicity as common pathway, the authors state:

More than 10 years of experience with NRTI therapy has revealed important adverse effects ranging from mild (myopathy) to fatal in some cases (pancreatitis, liver failure and lactic acidosis). Behind most of these side-effects there appears to be a common mechanism: a decreased mitochondrial energy-generating capacity … didanosine (ddI), zalcitabine (ddC), lamivudine (3TC), stavudine (D4T), and recently abacavir..........A special feature of some of these drugs is the protection against AIDS dementia complex, which appears to be related to good penetration of the blood-brain barrier. … Altogether, mtDNA appears to be extremely vulnerable to genetically and exogeneously acquired mutations. Since DNA polymerase γ appears to be the only regulating enzyme of mtDNA replication, inhibition of this enzyme with RTI might easily downregulate this replication resulting in decreased mitochondrial energy generation.

However, HIV itself causes damage to the mitochondria. This is from Changes in Mitochondrial DNA as a Marker of Nucleoside Toxicity in HIV-Infected Patients published in the New England Journal of Medicine in 2002:

Mitochondrial DNA:nDNA ratios were significantly lower in HIV-infected, asymptomatic patients who had never received antiretroviral therapy than in non–HIV-infected controls (P<0.001), a difference that was not explained by the lower CD4 counts in the former group. This finding is consistent with the results of recent in vitro studies in which HIV-infected cells had signs of mitochondrial necrosis. Furthermore, a mitochondria-controlled mechanism of cell death has been postulated in HIV infection.

The importance of mitochondrial DNA mutations in aging is also controversial. Many scientists believe that aging is normally due to damage to the cell's DNA, particularly telomeres. Telomeres are repetitive sequences of DNA at the end of the chromosomes. They signal to the cell reproduction process that copying should stop, else the chromosome will be merged with neighbouring chromosomes. Each time a cell replicates, the telomeres are shortened, eventually leading to them being so short that the cell cannot reproduce properly. There is evidence that both HIV and NRTIs shorten telomeres in some cells.

In conclusion, while the effects of NRTIs on mitochondrial DNA are concerning, we still know very little about the clinical consequences of this or how pervasive or serious a problem it is.

Thank you to Richard Jefferys, Simon Collins, Gregg Gonsalves, Nick Bennett and Ken Witwer for assistance with this article. TAC takes full responsibility for its contents.


Mitochondria are the energy factories of cells. Their DNA is quite interesting in that it is separate from the DNA of the cell that generates each unique human being. In other words mitochondria reproduce using their own DNA, not the DNA that reproduces our cells. This is because over a billion years ago they were a separate organism that evolved to form a mutually beneficial relationship with the cells found in all complex animals and plants. We inherit our mitochondria from our mothers.


Share this

New Mobile Platform to Improve Care for People Living with HIV. 14/3/2016

Published on AVERT

Mobile Africa

A new mobile platform that links people living with HIV to vital healthcare services is to be piloted in Cote d’Ivoire. The mobile platform, Mobile Training EveryWhere (M-Tew), has been developed by Orange and is the result of a collaboration between UNAIDS and the telecommunications giant.

The pilot will take place over four months, enrolling 1,000 people living with HIV in the commercial capital, Abidjan, and will target those most affected by HIV, including 300 sex workers and men who have sex with men (MSM).

The online platform will allow healthcare workers to communicate with patients via text messages, phone calls and voice recordings. The people enrolled in the programme will only need to have a basic mobile phone and 2G connection - no downloads or internet connection are needed.

The platform is being launched in a bid to improve patient retention and adherence to treatment, as well as break down stigma and discrimination. Data will also be collected and analysed to improve healthcare for people living with and affected by HIV. If successful, the pilot will be rolled-out across the city and nationally, as well as other countries in the region.

Michel Sidibé, Executive Director of UNAIDS, stated that innovation in how we deliver HIV services is integral to achieving the Fast-Track targets.

“This partnership with Orange will allow countries to benefit from state-of-the-art technology that is cost-effective and simple to use, to ensure they can provide the highest quality of services for people living with and affected by HIV.”  

Photo credit: 
Simon Berry/ CC BY-SA

- See more at: http://www.avert.org/news/new-mobile-platform-improve-care-people-living...

Share this

The Foreseeable Face of HIV. 30/6/11

The anxiety I am now experiencing stems from some of the unavoidable stark realities of ageing with HIV

The Independant

By Winnie Ssanyu Sseruma
30 June 2011

I have written about many aspects of HIV but so far, I’ve managed to avoid the subject of ageing. I am usually a very forward looking and optimistic person but, having recently hit the ripe old age of 50, my happiness at being alive and leading a fairly normal life is tinged, not just with guilt, but also growing anxiety about the future.

My guilt stems from the many reflective articles and speeches that have been triggered by the 30-year anniversary since HIV was first identified in California back in 1981. The most sobering fact about the commemorations is the staggering number of people we have already lost to this one disease so far – between 25 to 30 million worldwide, with just under 34 million currently living with HIV. Around 10 million people should be receiving HIV treatment but instead they’re languishing on waiting lists across the globe as a result of the myriad of differing interpretations of access. The deteriorating health of the global finances is also playing a huge role in this.

The anxiety I am now experiencing stems from some of the unavoidable stark realities of ageing with HIV. Some of the statistics emerging indicate that by 2015 half of all people living with HIV will be over 50 – on the one hand this is amazing because we were never supposed to live so long, but on the other it’s hugely challenging because of what that means for our future health and whether our health facilities are ready for what is already unfolding. Just the other day I read a feature referring to anyone over 50 who is living with HIV as elderly and I immediately thought ‘give me a break’, but they may have a point. There is a phenomenon in HIV circles referred to as ‘accelerated ageing’ which scientists are still not sure is induced by certain HIV drugs, the premature ageing of immune cells, or both.

Such HIV drugs were the very first on the market and became available in the early 1980s. Many of these are no longer being used in developed countries but are still a real lifeline in developing countries across the world. In many clinics in places like Sub Saharan Africa, where HIV is still a big challenge and there are very few drug options, doctors report seeing patients who are doing very well on HIV treatments but look twice or three times their real age. Even though people might be feeling well and living longer, visible physical changes that are not exactly flattering, can have a much more negative emotional impact and can be doubly stigmatizing.

Over thirty years ago, researchers predicated that people living with HIV would be more prone to heart conditions, neurological disorders, and cancers that affect the elderly. And sure enough, whether it is HIV itself or the treatments, doctors are seeing an increased risk of illness and death from liver, lung,  kidney, bone and cardiovascular disease as well as many cancers not traditionally HIV-related. Many of these ailments – and some others which are currently being researched – are showing up in people living with HIV in their 30s, 40s & 50s; ailments that are usually seen in people who are 70-years of age and above in the general population.

Lighten up, I hear you telling me, reminding me that the only certainties in life are getting older, taxes and death! I agree to a point. However, I also believe that there is no harm in confronting life’s challenges as long as you are able to offer solutions, raise awareness and educate others in the process – all points I hope I am able to address through this forum.

Much more needs to be done where the elderly living with HIV are concerned. There is the unspoken view that people over fifty either should not be having unprotected sex or are not having sex at all. Since unprotected sex is one of the main modes of HIV transmission, it’s ridiculous that there are hardly any prevention messages targeted towards older people. Indeed, when people over 50 end up testing HIV positive it’s often a surprise to some health professionals, not to mention being quite traumatic and shameful for their patients. Organisations such as HelpAge International have seen the number of over 50s who are testing positive increasing over the last few years but there is still nowhere near enough support for this group.

I am also acutely aware that as a 50-year-old living with HIV, I am at risk of becoming invisible if research and monitoring organisations do not review their guidelines beyond the current cut off age of 49. HIV prevalence figures in many countries only take into account adults between 15 – 49 years of age; a figure which does not even consider older people living with HIV or their potential treatment and care needs.

In short, much more needs to be done for the over 50s living with HIV – not to just to highlight this uneasy interface but to invest financially, to carry out more research and analyse the impact of the disease medically, socially, and otherwise for this important but essentially sidelined population.

Share this

Living with HIV in South Africa: Perceptions and Implications of HIV and AIDS as a Manageable Illness. 15/6/11

Access to antiretroviral treatment, promoting a rights-based culture, fighting stigma and viewing HIV/AIDS as a chronic and manageable disease, will go a long way in helping South Africa in its fight against the epidemic

15 June 2011

Given the extremely high prevalence and incidence of HIV and AIDS in South Africa, coupled with relatively wide ranging access to antiretroviral therapy (ART), many point to a HIV positive diagnosis transitioning from a ‘death sentence’ to a ‘manageable illness’ similar to other chronic conditions such as diabetes and high blood pressure. While the manageability and chronicity of HIV is arguably nothing new in well-resourced settings, the idea of HIV as a manageable condition is a new concept for many South Africans. However, given drastic mortality rates, high levels of social stigma and continued struggles with accessibility of ART in some areas, the question arises as to whether this is really the case? Also, if an ease of acceptance of HIV positive diagnosis is occurring, what are the implications?

This CAI paper explores the impact that high levels of HIV and AIDS and relatively wide-ranging ART in South Africa have among people living with the virus.

The changing characterisation of HIV and AIDS in South Africa

The perception of HIV and AIDS has changed significantly since it became a well known disease in SA in the early 90s. The past three decades have seen the country's HIV prevalence rate grow to over 15 percent with approximately 5.6 million HIV-infections.(2) Through national debates, mass prevention efforts, international involvement and community mobilisation for universal treatment, HIV has become increasingly ‘normalised’ in many ways, in terms of social acceptance, acknowledgement and visibility.(3) Even so, stigma plays a significant role in the characterisation of the virus in South Africa today.

While some argue that HIV status disclosure is no longer rare, the stigma associated with disclosure is identified as a major driver of the HIV and AIDS epidemic. The role it plays in undermining treatment and prevention efforts is widespread in South Africa.(4) Stigma is a multi-faceted phenomenon, which is a culmination of a set of societal factors that prevent, harm and delay disclosure of one’s HIV status. Stigma surrounding the virus is universal but South Africa’s HIV and AIDS stigma is unique to its social conditions and historic legacy of fragmentation, blame and oppression.

However, new light is being shed on the relationship between disclosure and stigma. A recent working paper released by the Centre for Social Science Research points to high levels of disclosure within individual households contrasted with low levels of disclosure in the general population. The study indicates that in a township outside of Cape Town with high HIV prevalence, “disclosure was not only met with positive and supportive responses from household members, but that it…shifted over time as individuals became more aware of the prevalence of HIV, and started to dissociate the virus from conceptions of promiscuity and death.”(5)

The authors problematise disclosure and describe it as a complex process, but their findings demonstrate that while stigma is still a significant barrier to living positively with the virus, the barriers are slowly eroding especially at the household level. Both the changing nature and high prevalence of the disease has had an impact on this changing norm.

Shifting norms in light of access to ART

Perhaps the most prominent influence in shifting the norms around HIV in SA is its ART programme and what this means for living with the virus. With the largest rollout of ART in the world, SA has relatively wide ranging access to treatment.(6) However, with more than five million people infected and just 700 000 receiving ART, there are still significant gaps in treatment.(7)

In a recent report, Christopher Colvin of the Centre for Infectious Diseases and Epidemiological Research at the University of Cape Town points out that although a major treatment gap exists, it is closing significantly and this means HIV is moving from an acute disease to a manageable, long-term condition.(8) According to Colvin, “Many of the dramatic developments in the earlier history of the HIV epidemic were driven by a focus on HIV’s ‘acuity’ rather than its chronicity…especially in Southern Africa.”(9) This change denotes a major shift, not only for the national health-system and funding needs, but also on shifting norms on a personal level of what it means to live with the virus.

As a result of recent community and political mobilisation for the right to treatment, high levels of foreign investment and interest in HIV and AIDS programming from the medical and social sciences, more and more HIV positive South Africans are experiencing longer lives. In post-apartheid SA, the struggle for access to treatment has been defined by a highly publicised divergence between the government and AIDS activists associated with the well-known Treatment Action Campaign (TAC) over a history of AIDS denialism and insufficient access to ART.(10) The history of access to ART is fraught with conflicts, court challenges and at times militant social movements to demand treatment. This has created a rights-based discourse around access to treatment specifically and access to health care more generally.

While there are serious concerns that the health system and international donor community cannot keep up with the demand that universal ART coverage demands, the ethos around HIV and one’s right to life through ART continues to be firmly cemented through TAC and other civil society activities. For example, the 'I am HIV positive' campaign that links HIV positive and negative people together in a solidarity building effort has had a tremendous impact on normalising the virus. This rights-based culture continues to play a major role in shifting the norms of living with HIV by promoting social acceptance and awareness. These campaigns and others are indicative of the pursuit to change the nature of the epidemic from an acute to chronic, manageable illness.

Positive Heroes: A case study in normalisation

Little research has been conducted on what impact the chronicity of HIV in SA is having at an individual level. In this emerging research area, experts suggest that as a result of scaled up ART, the illness is not just lasting longer but is also increasingly ominous and complex, with alternating periods of crisis and stability.(11) Studies have not yet been conducted on whether there is an increased morale among HIV positive people as a result of awareness and access to treatment. However, the assumption that this may well be the case may ring true in a country where mass education and prevention campaigns are well-known and government and NGO efforts to address stigma, increase adherence and provide a safe environment to discuss HIV are ubiquitous.

The South African NGO Positive Heroes is one example where efforts to confront stigma aim to “…raise the profile of South Africans who are living positively with HIV, from a wide variety of communities and walks of life both urban and rural, in order to encourage people to manage their HIV and live full, rewarding lives.”(12) The approach taken on by Positive Heroes embodies the shift towards normalisation by promoting that the virus does not have to define one’s life. One ‘positive hero’ describes his experience of managing the virus in relation to other chronic diseases.

He says that it is “such a breeze for me to disclose now because I know that HIV is manageable and that there is life after HIV” while another role model exclaims that “being HIV positive is not a death sentence and there is so much that can still happen in your life.”(13)This type of initiative highlights not only the social will for a major shift in thinking of the virus but a social mobilisation beyond the well-known Treatment Action Campaign in promoting normalisation.

Implications and concerns

While wide ranging access to ART and the normalisation of HIV in SA is something to be celebrated, there are implications and concerns. Colvin points out that ART enables people on treatment to be involved in the labour force and to participate in and enjoy normal, everyday activities that were likely impossible without treatment. However, he also suggests that ART comes with unique challenges, such as difficulties with adherence, episodes of serious illness and at a national level, the need for continued investment of public and international resources to sustain treatment programmes.(14)

High HIV prevalence and treatment rates pose challenges to the labour market, which is already struggling with a very high unemployment rate. As a result of HIV affecting many individuals in their most productive years, the chronicity of the virus has been shown to both positively and negatively affect household employment outcomes, consumption, savings, behaviour, educational attainment and investment in children depending on the stage of one’s health.(15)

The stress on SA’s health system in rolling out long-term ART is perhaps the most well publicised challenge attributed to the chronicity, high prevalence and incidence of HIV in SA. In addition to the massive international challenge of ART funding ‘flat-lining,’ SA also lacks the human resources to deliver HIV and AIDS treatment at the rate necessary to reach universal goals. In order to reach universal treatment goals, SA requires more than three times their current healthcare workforce to be added every year for the next six years to reach universal coverage by 2017.(16)

Concluding remarks

Viewing HIV as a chronic, manageable infection is not a new concept and has dominated HIV treatment discourse for quite some time in well-resourced settings. SA is in a unique situation in which its HIV positive citizens are accessing life-prolonging treatment on a public scale that is unmatched in the rest of the world, largely thanks to the strong tradition of social justice movements in the country. However, as HIV becomes more normalised and the hope for a long, ‘normal’ life increases, it is important to balance optimism with pragmatism for the future of those living with HIV in SA.

Programmes such as ‘Positive Heroes’ and the ongoing work of the TAC and others are steadily ensuring increased accessibility and reduced levels of stigma to promote HIV as a chronic, manageable illness. However, there is a need to make this a reality for everyone. In 2009, the Joint United Nations Programme on HIV/AIDS (UNAIDS) estimated that approximately 310 000 people died of HIV, averaging to 850 deaths per day.(17) This alarming mortality rate indicates that ‘chronicity’ is not a reality for everyone. Many HIV and AIDS patients still lack access as a result of lack of testing, non-disclosure or health system constraints and, without a concerted effort to address these problems and make manageability a reality for all, patients like these may never experience the shift from an acute disease to a chronic, manageable illness.

Share this

Stress: "Is It Worth Losing a T Cell?" 26/5/11

For those living with HIV/AIDS, using your bodies to minimize stress is essential.

The Body

By Elizabeth Lombino
26 May 2011

I probably don't need to tell you that our lives are full of tons of stress. Money, relationships, terror alerts, traffic, unemployment, poverty, the endless circus of GOP candidates, finding out your partner had a child with your maid 10 years ago (okay, maybe that one is specific to a certain Kindergarten Cop).

When you are living with HIV/AIDS, stress can be intensified. Okay, that's a total understatement. Stress can be like a tornado swirling with HIV-related debris coming at you from every angle. Doctor's appointments, endless blood work, waiting for results of blood work, HIV medications, additional medications to off-set the countless side-effects of HIV medications, financial strain, treatment fatigue, stigma, discrimination, disclosure issues ... I could go on with this list, yet that would mean this blog post would be insanely long. Plus, we need to move on to the part where we help you relieve the stress.

There is abundant research that shows a clear connection between our minds and bodies, especially as it pertains to stress. Think about it -- when you experience stress, you feel it in your body. Maybe your muscles tighten, your heart races, your stomach gets upset, you have trouble sleeping. These are just some of the ways stress can impact our bodies.

Just as our bodies feel the stress of our minds, we can use our bodies to help relieve the stress. Something as simple as taking a deep breath can work wonders in reducing the impact of stress on our bodies. Try it right now. Take a nice, deep, cleansing breath. It helps us to slow down, to provide our muscles with much-needed oxygen, and to slow our heart rate. Of course, the stressful situation is still here, yet our minds and bodies are much better equipped to deal with the stress.

For those living with HIV/AIDS, using your bodies to minimize stress is essential. The impact of stressful issues can be detrimental to your overall health and well-being. Stress not only negatively affects your body and mind, it also can further compromise your immune system. When feeling excessive stress, your T-cell count can lower. This is true for those without compromised immune systems as well. Yet, if the goal is to raise your T-cell count, how you handle stress can be counter-productive in this goal.

In one of the therapy groups I ran, I had a client who talked about stress relief as a necessity for her. She had a saying that has stuck with me: "Is this situation worth me losing a T cell over?" She would talk about her life, the stress she encountered, and always ask that question. As others would be discussing their stressors, she would ask them the same question. It was incredibly powerful and helped everyone see their lives in a new way.

Now of course I realize this is all easier said than done. "Relieve stress, no problem!" I realize it's not this easy. If it were, there would not be a Self-Help aisle in every single book store across the country. Stress relief is something that takes practice and requires you to be in touch with your body and mind. Do you know where you feel stress in your body? Take a moment to think about it. I listed some of the places above. Maybe you feel stress in all of those places. Maybe your neck tightens, or your jaw locks, or your back aches. Stress settles in our bodies. Only when we pay attention to our bodies can we tell where our stress is and take steps to relieve it.

For me, my muscles tighten and ache. All of my muscles. My face, my hands, my back, even my feet. If I let the stress settle in these places, clearly I would have some trouble getting around. So for me, exercise, stretching and breathing work wonders. As I breathe in, I focus my breath to the muscles that are tight. I breathe out and focus on relaxing those muscles. It helps so much. Of course I've been doing this for years now. It took a ton of practice. So it's okay if you don't feel relief on the first try.

In addition, it's perfectly fine if a strategy doesn't work for you. For some people, breathing doesn't work very well. Especially if you are the type of person who has difficulty focusing or slowing down. It may take more practice, or it may not work effectively at all. That's okay. What works for one person may not work for another. That's the beauty of stress relief -- it's personal and there are a ton of options to try. Keep trying something until you feel some relief.

Here's a brief and not comprehensive list of some stress relieving strategies: breathing, exercise, light stretching/yoga, listening to music, playing music, dancing, quiet time, looking at a calming picture, closing your eyes and visualizing a calm place (like the forest or beach), calling a friend, humor, taking a walk, chocolate, prayer, writing, therapy, reading a good book, taking a bubble bath, massage.

Remember, none of these will take stress away completely. Sorry, I wish I could wave a magic wand and all stress would vanish. These strategies are meant to reduce the impact of stress on your mind and body. To assist you in feeling refreshed, energized, and better equipped to deal with the stress. To help you not lose excess T cells but rather, assist you in feeling healthier and happier.

Try one or more and see what works for you! I plan to discuss many of these more specifically in future posts. Please also feel free to share some of your favorite stress-relieving tips in the comments! The more ideas and tools we all have, the healthier and happier we will all be. So always ask yourself: Is this situation worth losing a T cell over?

Share this

As Food Prices Bite, HIV-positive People turn to Kitchen Gardens. 21/4/11

IV-positive patients in Uganda, Gulu town, are becoming more self-reliant in an effort to maintain a healthy diet and stay on their antiretroviral medication

21 April 2011

Kirombe - The small 10m by 15m garden behind Agnes Oroma's house in northern Uganda's Gulu district is much more than a hobby garden; according to HIV-positive Oroma, it is one of the main reasons she is in good health.

She grows indigenous vegetables and tomatoes to supplement her daily diet of beans, maize meal and silver fish; Oroma also proudly shows off a sisal sack in which she grows onions.

"Do not ignore that little space behind your house, it can do a lot to feed you cheaply and lessen your financial burden that would enable you spend on other essentials to keep you healthy on your daily ARV treatment," 31-year-old Oroma told IRIN/PlusNews.

In the face of rising global fuel prices and a prolonged dry spell, Ugandans are dealing with steep increases in the price of food that have sparked protests in many parts of the country. According to a recent report by the World Bank, the price of maize in Uganda has risen by 114 percent over the past year.

Oroma and other HIV-positive patients in Gulu town are becoming more self-reliant in an effort to maintain a healthy diet and stay on their antiretroviral medication. Oroma's group of backyard farmers has grown to 30 in the past few months.

"Food was my biggest worry for my treatment; I had become weaker because my body didn't have the strength to withstand the potency of the ARV drugs," said Maurine Kilama. "Since I started growing these vegetables, producing more food, I feel a lot of improvement and I have the strength to do other things.

"I now take my medication without worries because I know the food I grow can keep me going for another day," she added.

Kilama said by September 2010, her weight had dipped to 52kg from her usual 58kg; since she started her garden, she has regained 4kg.

"The onions and vegetables I harvested from my small plot in March fetched me 100,000 shillings [$41.60]," she said. "I planted them between November and January; growing them is easy provided you water them early morning and evening."

The money helped to buy food and pay school fees.

Emergency feeding

However, for many HIV-positive people, already weakened by lack of food, working in a garden is not an option. At Gulu Hospital, 1,792 HIV-positive patients received emergency therapeutic food support in 2010. Since the beginning of 2011, more than 300 have registered.

"Nutrition is affecting HIV care; when we started assessing nutrition we got to know that the patients were undergoing difficult times," said Francesca Achieng, a nutritionist at the hospital. "[Without adequate food] a patient cannot withstand the strength of ARV drugs because of its side-effects, the drugs are toxic, they can destroy your body while they fight to reduce multiplication of the virus in your body."

Patients are assessed and initially given rations of therapeutic food, collected along with their ARVs.

However, many HIV-positive people find themselves back at the emergency feeding centre, unable to pay for costly food. A group of people living with HIV in Gulu has appealed to the government to set up nutritional support programmes to ensure they are able to continue with their ARV regimens.


Share this

Young Adults who were Infected at Birth: The Complexities of Lifelong HIV are Increasingly Apparent. 11/4/11

Rates of hospital admissions, co-morbidities and lipodystrophy are high.


By Roger Pebody
11 April 2011

Although 85% of young adults who take antiretroviral therapy have an undetectable viral load, the complexities and complications of lifelong HIV infection are becoming increasingly apparent, researchers told the British HIV Association conference in Bournemouth last week. Rates of hospital admissions, co-morbidities and lipodystrophy are high.

The psychological burden of living with HIV is also heavy. Problems with adherence, mood, anxiety, disclosure and relationships are common, with a few young people self-harming or requiring psychiatric medication.

The issues were raised in a series of studies from St. Mary’s Hospital, the London hospital which for many years has had the largest paediatric HIV clinic in the country and has more recently developed the 900 Clinic, a transitional services to help young people manage the shift from child-friendly services into an adult clinic. In addition, a national survey shed light on adherence issues for young people with HIV.

Tania Wan presented data on the health outcomes of 58 perinatally infected young people who were seen between 2006 and 2011 at the 900 Clinic. The young people transferred from paediatric clinic between the ages of 16 and 18 and their current median age is 20, with the youngest 16 and the oldest 26. Three quarters are black African; there are more women than men.

At their last follow-up, two-thirds of the young people were taking antiretroviral treatment, and 95% of this sub-group had an undetectable viral load.

However there were a considerable number of complications. A fifth of patients had a CD4 cell count below 200 cells/mm3. A few of those with undetectable viral load had failed to fully restore their immune function.

At the time of last follow-up, a quarter had chosen to discontinue antiretroviral treatment, despite considerable support and intervention from clinic staff. Just under half of this group had a CD4 cell count below 200 cells/mm3.

There have been seven pregnancies (with no HIV transmissions).

A quarter had at some stage been admitted to hospital as an inpatient, staying a median of nine days. Four had intentionally taken drug overdoses; two hospitalisations were linked to the opportunistic infections PCP and MAI; one 22 year old was admitted following a stroke and osteocronosis (loss of blood supply to the bones).

Two individuals died, at the ages of 20 and 21. One had refused antiretroviral therapy; the other had developed multiple drug resistance.

One in eight had severe lipodystrophy, with several requiring surgery or injectable fillers.

The high levels of psychological need in this group were described in a poster from Graham Frize and colleagues at St. Mary’s. For this analysis, the psychology case notes were checked for 63 young adults attending the clinic between 2008 and 2010.

Just over half were identified as having clinically significant psychological issues, whereas in this age group of the general population, the figure is 13 – 16%. These individuals were all referred for psychological interventions but a quarter did not take up the service. Young men were more likely to decline psychological services than women.

The most common problems were mood, anxiety, adherence, disclosure and relationships, but people usually presented with more than one issue.

Commonly reported stressors include difficult family relationships, lack of social support, housing problems, financial problems and health problems. Several had concerns about body image.

A quarter of clinic patients (17 people) were considered to have complex needs. Five had self-harmed by taking a drug overdose (including the four requiring hospitalisation as previously mentioned). Eight have been prescribed psychiatric medication. Four were referred for neuropsychological testing due to concerns about the impact of neurocognitive impairment on their functioning.

Given the results of this analysis, St. Mary’s have decided to offer an annual psychological review for this group of patients. This will involve tests to assess psychological distress as well as physical and mental health-related quality of life.

Adherence to medication is challenging for this group and a problem which drives many of the health complications described above. Another poster from St. Mary’s reviewed adherence and treatment response in young people, both while they were attending the paediatric clinic and later when they attended adult services.

Individuals who had good self-reported adherence in childhood generally maintained the same behaviour as young adults and continued to have good treatment response. Similarly, those with poor adherence in childhood most commonly continued to have difficulties, with sub-optimal clinical outcomes.

This is despite the provision of intensive support in both the paediatric and adult services including provision from psychologists, peers and the voluntary sector; practical adherence aids; directly observed therapy and the use of gastrostomy tubes into the stomach.

The researchers suggest that as adherence patterns appear to be established in childhood, it is essential to support adherence when children begin therapy in order to promote long-term adherence and survival.

The final study, from Susan McDonald and colleagues is a national survey of young people with HIV aged 12 to 24, in order to review their feelings and concerns about adherence. A total of 138 took part, with a median age of 16, and once again there was greater participation from females than males.

Just under two-thirds (62%) reported adhering to at least 95% of their doses, mirroring the 66% who said that their viral load was undetectable.

Only a third used practical adherence tools such as pill boxes, alarms, keeping medication in a place that helps them remember or carrying a spare dose with them.

When asked what helped them adhere, the participants were more likely to mention reminders and support from family, carers and peers - just under half mentioned this. Not being able to take treatment in front of family or friends (due to disclosure issues) negatively affected the adherence on a fifth of respondents. Some mentioned that if they didn’t need to keep HIV such a secret, their adherence would improve.

Drug side effects were described as a factor that had contributed to treatment interruptions and to missing doses by many participants. Fewer side effects, fewer pills and once-daily regimens were thought to help adherence.

One respondent described the reasons behind a treatment interruption: “Feeling depressed and there are times when you don’t feel like taking them because you feel well and when you feel them you feel ill.”

Another respondent’s comment on what could help adherence was: “I don’t know really, I like the challenge, every day’s a victory, peer support has given me insight.”

Share this

Brain Impairment in People with HIV may Not be as Common as we Thought. 11/4/11

Brain Impairment may in fact be little higher than in the general population.


By Gus Cairns
11 April 2011

Two studies presented at the17th British HIV Association (BHIVA) conference last week suggest that the proportion of people who have subtle brain impairment due to HIV may not be as high as previously thought, and may in fact be little higher than in the general population.

Several studies measuring neurocognitive impairment (deficits in memory, thinking and movement) in people with HIV in the last few years have concluded that a high proportion of people with HIV have subtle impairments. These may not cause symptoms that interfere with daily life, but can be detected by psychological tests.

About 16% of the general population has some degree of neurocognitive deficit. It therefore caused a lot of concern when in 2010 the large CHARTER trial in the USA found that 52% of 1526 people with HIV had evidence of neurocognitive impairment.

A quarter of these people had other conditions that were probably the major cause of their brain impairment, but that still meant that 39% of all HIV-positive patients had brain impairment without any other obvious cause, and 36% of patients who had never had an HIV-related illness. Of these 71%, or 28% of the entire group, had no obvious neurological symptoms. CHARTER, therefore, suggested that HIV more than doubled the risk of brain impairment in otherwise healthy people, raising concerns that it might become even more common with age.

One study presented at BHIVA, however, found a rate of asymptomatic neurocognitive impairment of only 19% in a group of patients with suppressed viral loads, very little in excess of the general population rate. Another study found that young people who had been born with HIV had rates of neurocognitive impairment no higher than their HIV-negative siblings. This study, and a third study that looked at rates of neurocognitive impairment in the over-50s, found some evidence that some psychological tests that rely on self-report might not be detecting actual difficulties in thinking and memory, but rather people’s fear of them.

The St Mary’s Study

Dr Lucy Garvey from St Mary’s and Hammersmith Hospitals in west London reported on a survey (which won a prize for best presentation at the conference) of 101 patients who were on stable antiretroviral therapy without any obvious neurological symptoms or other illnesses. They had all had HIV for more than six months.

The study subjects were given two types of psychological test, a 20-minute computerised cognitive assessment test called Cogstate, and the International HIV Dementia Scale (IHDS), a short, validated screening test for dementia employing three simple memory and motor tasks.   

Neurocognitive impairment was defined as scores more than one standard deviation below the mean age-matched population data in at least two areas of functioning - roughly within the lowest one-sixth of performance scores.

The median age of the subjects was 53, and the majority (77%) where white men. They had been HIV-positive for an average of 14 years, with a mean CD4 count of 559 and lowest-ever CD4 count (nadir) of 185. A high proportion – 25% - had hepatitis C, which is also associated with neurocognitive disorders.

The overall rate of neurocognitive impairment was 19% in this group, only 3% above the rate in the general population. The pattern of domains affected was familiar from other studies of people with HIV, in that fine muscular movement, multitasking and executive function (prioritising and planning) were particularly impaired, and CD4 nadir was associated with a high IHDS score, but nonetheless the impairments seen were slight.

“Many cohorts have reported HIV-associated neurological disorder, but their antiretroviral therapy status and health have been widely variable,” commented Dr Garvey. “This is one of the first studies to look at neurocognitive impairment only in stable HIV-asymptomatic patients on suppressive antiretroviral therapy.”

The St Mary’s team will now conduct further studies to look at neurocognitive disorder in drug-naive patients with unsuppressed HIV.

Young people and brain impairment

The results from this study were echoed by another study from St Mary’s that looked at neurocognitive function in young people who had been born with HIV. It studied 31 young people aged 16-25 (mean age 20) and compared their performance with 14 of their HIV-negative siblings. The two groups were matched for age, ethnicity (both 85% black African) and gender (33% and 29% respectively were male in the positive and negative groups). Seventy-nine per cent of the positive subjects were on antiretrovirals of whom 70% were virally suppressed (55% of the whole group).

These subjects were given the Cogstate computerised tests and the IHDS, and were also given the prospective and retrospective memory scale (PRMQ) questionnaire, a self-reported rating of problems with recall and retention of information. A minority of both groups were also given an MRI brain scan to detect signs of inflammation.

The positive and negative group had identical scores on the IHDS and on the Cogstate test in all domains. The PRMQ score was significantly worse (p=0.023) for the HIV-positive young people, and there were also high levels of activity of certain neurotransmitters in the basal ganglia area of the brain, a finding seen in other studies.

However presenter Jane Ashby commented that the PRMQ questionnaire, as a self-report, could measure subjects’ concern about memory problems as much as actual ones, and so far no study in HIV has actually established whether the inflammation seen in MRI scans is actually associated with neurocognitive performance.

Screening for brain impairment

The idea that some psychological tools might be reporting HIV-positive people’s fears of dementia rather than actual impairment, and might over-report neurological problems, has led London’s first dedicated HIV clinic for people over 50 at the Chelsea and Westminster Hospital to include two ten-minute psychological questionnaires for generalised anxiety disorder and depression as standard first steps in psychological assessment of patients, only proceeding to tests for neurological function once these are eliminated.

The researchers comment that “high levels of anxiety, depression and concern about cognitive function” are common in older patients and that “memory loss, mental slowing and psychomotor disorder are common manifestations of these conditions” and should therefore be assessed and treated first.   

Share this

Fertility Treatment can Use Semen from Men with HIV. 24/3/11

Fertility treatments can be done safely and effectively in couples where the man is infected with the AIDS virus and the women isn't


By Genevra Pittman
24 March 2011

Fertility treatments can be done safely and effectively in couples where the man is infected with the AIDS virus and the women isn't, according to a new review of past studies.

Over the last 2 decades, researchers have improved methods of "washing" the semen of men infected with HIV, the virus that causes AIDS. Unwashed semen could pass HIV to the woman or their baby.

"I think the procedure is getting safer and safer," said Dr. Deborah Anderson, a scientist at the Boston University School of Medicine who studies HIV. She was not involved in the current research, but she told Reuters Health that washing the man's semen lowers the risk of transmission enough that "it's an acceptable ... procedure for couples that really want to have children."

In the new review, published in the journal Fertility and Sterility, researchers from the Evandro Chagas Clinical Research Institute in Rio de Janeiro, Brazil looked at 17 earlier studies involving a total of about 1,800 couples in which only the male partner had HIV.

In each of the studies, researchers performed one of two common types of fertility treatments after washing the semen. Then they recorded how often women became pregnant after the procedures. They also monitored the women and any babies they had as a result of the procedures, to see whether HIV had been passed on from the semen.

About a third of the women had a procedure in which a single sperm is injected into a single egg; then the fertilized egg is placed into the woman's womb. This kind of fertility treatment is assumed to be safer for couples in which the male partner has HIV because it is easier to ensure that the sperm being used does not have the HIV virus.

The rest of the women had sperm injected directly into the womb, when their eggs were most likely to be there.

Ultimately, roughly half the women became pregnant, and about 80 to 85 percent of the pregnancies resulted in the birth of a baby.

The success rates for pregnancy were comparable to what has been shown in other studies of fertility treatment in couples without HIV. If anything, couples in the current study may have been more likely to get pregnant using fertility treatments because many of them had no underlying fertility problems, the authors say.

None of the women in the study, or babies that were born after fertility treatments, tested positive for HIV. However, in a few of the studies in which researchers tested semen after it was washed, between two and eight of every 100 samples tested positive for HIV - indicating that it still may be possible, if unlikely, for the virus to be passed either to the woman or to the fetus.

However, the findings are "very reassuring," according to Dr. Elizabeth Ginsburg of the Brigham and Women's Hospital Center for Reproductive Medicine in Boston.

Ginsburg, who was not involved in the study, said that even if some of the samples did test positive for HIV, the amount of the virus was probably so small that it wasn't likely to be passed to the mother or baby. In addition, she said, HIV transmission requires some sort of trauma to the woman's body because the virus is passed from semen to blood, and although there's a chance of that in intercourse, it's not likely in fertility treatment.

Despite mounting evidence of its safety, fertility procedures are not very common in couples in which the male partner has HIV. In part that's because the procedures aren't often covered by insurance, Ginsburg said. Although some fertility procedures may be as inexpensive as $1,000, others run many times higher.

"One of the things that is a shame is that when couples can't afford fertility treatment, they're stuck with the other option, which is having timed intercourse, and that puts the woman at risk," Ginsburg said.

Anderson said a new option for these couples might become available in the future -- medications that the woman can take to avoid getting the virus from her partner who has HIV. And, "if the mom doesn't get it, the baby's not going to get it," she said. "I think that's going to be the future of this field."

So far, only a couple of early studies have been done on the drugs' effectiveness at preventing transmission of the virus, and for now, Anderson said, fertility treatment is the safest possible option for these couples.

Share this

Helping Adolescents Live. Living with AIDS # 467. 17/3/11

Bringing up a child born with HIV can be daunting, especially when the child reaches adolescence and starts being curious about sex. But, finally, there is some help for teens with HIV and their families.


By Khopotso Bodibe
17 March 2011

Bringing up a child born with HIV can be daunting, especially when the child reaches adolescence and starts being curious about sex. But, finally, there is some help for teens with HIV and their families.

Young people born with HIV have very few outlets to freely speak about their lives with HIV. Parents, care-givers and health workers are often ill-equipped to respond to their needs. As a result, their sexual and reproductive health needs are not adequately addressed. This is what researchers Marnie Vujovic and Saranne Meyersfeld discovered while working children aged 10 – 14 who were born with HIV.

“Addressing sexual and reproductive health issues at this age is a particularly important aspect of care. And, in fact, early adolescence is often seen as a window of opportunity where health care providers are afforded the opportunity to reach young people before they become sexually active. Young people can start to acquire the skills, the attitude, the knowledge that they need for their future well-being”, said Marnie Vuyovic, one of the two researchers who conducted the study.

No one has focused on helping young people who are already HIV-positive. So, Vujovic and Meyersfeld, research consultants for Anova Health Institute, have written a manual to help them.

 “Importantly, I think, we identified the need for developmentally appropriate resources that would take into account the different needs of HIV-positive boys and girls and, also, we’re providing with the information that they need to make responsible decisions about their sexual and reproductive health. This project has really been about developing a reproductive health tool that can be used by health providers to provide HIV-positive children in early adolescence, for example, by building positive gender, attitudes, self-esteem, decision-making, communication skills… all of those important aspects of well-being”, Vuyovic said.

Vuyovic said that increased access to antiretroviral therapy and wide-spread HIV testing means that many children infected through mother-to-child HIV transmission are surviving into adolescence and beyond. As a result, the necessity to address their sexual and reproductive health needs is readily apparent.   

“South Africa has the highest number of children living with HIV, estimated at around 280 000 below the age of 15. In 2006, there were about 64 000 children who were infected with HIV from their mothers. In the older age group, 15 – 18 years of age, children are largely infected through unprotected intercourse”, she said.

Given the number of children growing up HIV-positive, it is rather startling that a significant number of the children involved in the study were not even aware of their HIV-positive status. Study researchers denied us access to interview the child participants in the study because of that and other ethical considerations. Fellow research consultant, Saranne Meyersfeld, explained why it was that many of the children did not know that they had HIV.

“This is a very complicated subject. Care-givers (and) parents don’t know how to disclose to their kids. They are scared. Stigma, obviously, comes into it. The parents are scared that the child will inadvertently speak about their positive status and, then, it incriminates the entire family, which brings the tidal wave of stigma and discrimination right on the family”, said Meyersfeld.

However, if possible, she said parents and care-givers to disclose to children as early as possible that they have HIV infection. 

“Start as young as possible”, she said. “Take your cue from the child: ‘Why am I going to the hospital’? ‘Well, there’s a problem with a germ in your blood’, at two. There are lots of books that are relatable to advise the care-giver, the parent, the heath care team on appropriate ways of introducing the subject of disclosure to the child. If a child feels comfortable and trust has been built up, there’s a lot more chance that they will ask pertinent questions and the care-giver can be guided by them”, Meyersfeld advised.

She said it is natural that the pertinent questions will take on a different turn as they reach adolescence.

“They are concerned about disclosure to partners. They are concerned about the possibility of being able to have babies”.

“Something that comes up frequently is: “Will I see myself as a mum or dad in the future”? “But will I be able to have children”?, Marnie Vujovic concurs.

“And those are the kind of questions that are really concerning and those are the kind of questions that we need to be able to answer”, she said.

She added that the needs and desires of of HIV-positive adolescents are no different from those of their uninfected peers.

“We also have to bear in mind that being positive does not mean that a young person can’t enjoy or express his or her sexuality, but it does mean that they need to deal with the identity of being HIV-positive at an early age. And they will need to negotiate different aspects of the illness which can impact on their sexual and reproductive health”.   

Vujovic and Meyersfeld believe that the manual will empower parents, care-givers and health care providers to advise HIV-positive adolescents accordingly and that the adolescents themselves will be able to navigate around making healthy choices for their continued well-being.

Share this

Early Disclosure to Children Could be Best. 15/2/11

“The more empowered children are in their own health and understand what’s going on with them, they know what the risks are and what the benefits are for ARVs... then the better adherence to their treatment and the more they speak openly about it”.


By Ayanday Mhkwanazi
15 February 2011

Sharing a child’s HIV status with them can be a difficult for a caregiver, but according to the Wits Institute for Health HIV and Related Diseases, disclosure has incredible benefits. This week, Health-e News visited an HIV-positive nine year-old boy who proves that early disclosure could be advantageous.

Tebogo Moroke is a small built, almost fragile boy. His eyes are glassy and he doesn’t look his age. What’s captivating about him is his optimism about life and his future.  In his young life, he already has to live with the reality of being HIV-positive and the responsibility that comes with it. But, unlike worrying about the disease, he says he is living a ‘stress-free life’. What is remarkable is that Tebogo is using his time to teach others like his friends about HIV/AIDS.

“When they fall down while we’re playing and I see blood, I tell them that they should not touch each other’s blood. They should go to their mommies and ask for bandages after the wound has been cleaned. Don’t do bad things because you can get HIV or TB or another illness”.

Tebogo has lived with HIV since birth. He had a twin sister who succumbed to death after falling ill when they were three months old. After that Tebogo survived nearly four years of going in and out of hospital, with doctors showing little faith that he would make it. As a result of his ordeal, his dream is to become a doctor to help children just like him.

“When I grow up I want to be a doctor because I like it and that I can help other kids who are HIV-positive take their medication. And I want them to be alright and healthy. Like me, I am healthy because when I play with other children I don’t say I’m tired. I continue playing all the time”, he says.

His friends have embraced him and his status. They say they learn a lot from Tebogo everyday and that his HIV status has never been an issue.

“Tebogo is my friend. We play together all sorts of games. He is a good friend and I enjoy playing with him”, says one of his friends.

“I enjoy playing with Tebogo.  He’s my friend. He even advises us on how to behave. He warns us not to fight with him or make him fall because he could bleed and that could be dangerous. I love everything about him”, says another.

 “Tebogo is a very good friend of mine. We play all the time when we come back from school. He is a good friend that doesn’t like fighting. We treat him normally like our other friends”, another enthuses.

 Tebogo is an inspiration to his mother and the community where they live. His mother, Vivian Moroke, says she only found out that Tebogo is HIV-positive when he was eight months old after requesting the nurses to do an HIV test on him. The first four years of his life were not promising as he was gravely ill. Vivian says the news of her son being HIV-positive was shattering.

 “It was hard to accept the fact that he is HIV-positive. But the nurses gave me the necessary support. I was stressed out while he was in and out of hospital. His health was not promising at all. I even had to resign at work in 2003, so I could look after him”, she explains.

But the trauma did not end there for the Moroke family. In 2005, Tebogo’s condition worsened. He had full-blown AIDS and was bed-ridden.

“He stopped walking or crawling. He had full-blown AIDS and the doctors were afraid he might die. They tried so much to help him. He slowly started improving and regained his strength and mobility. I told him when he was four years-old that he is HIV-positive and I used Nkosi Johnson as a model for him to draw strength and he did. We’ve never looked back since that day”, says Vivian.

 According to the Wits Institute for Sexual Reproductive Health HIV and Related Diseases, Tebogo is a great example of how beneficial it is for children to know their HIV status.  Nataly Woollett from the organisation’s Prevention and Counselling Programme says they encourage care-givers to disclose to their little ones as early as they can.

“The more empowered children are in their own health and understand what’s going on with them, they know what the risks are and what the benefits are for ARVs... then the better adherence to their treatment and the more they speak openly about it”.

She says those who have not been disclosed to, but suspect that they are HIV-positive tend to isolate themselves.

“Self-esteem takes a knock because it is like knowing the big secret, but nobody in the family talks about it. They feel completely disempowered and think something is wrong with them. Children don’t necessarily see their options in that situation - whatever good or bad that happens in the universe, they blame themselves. They subscribe to themselves that they are literally bad kids and that’s how their self-esteem takes a knock”, says Woollett.

The organisation offers counselling sessions to care-givers on how best to disclose to their children. However, Woollett warns that the environment, particularly within the family, has to be conducive for disclosure. 

Share this

Flu Vaccine Recommendations for Patients with HIV are 'Justified'; Vaccination Encouraged. 7/1/11

There were therefore unanswered questions about the efficacy of vaccinations.


Michael Carter
7 January 2011

Recommendations that patients with HIV should be vaccinated against influenza “are justified,” according to an editorial in the January 1st edition of Clinical Infectious Diseases, and the use of the vaccine “should be encouraged.”

The author, Dr Raphael Dolin of the Harvard Medical School, reviewed three studies published in the same edition of the journal that examined the safety and efficacy of influenza vaccination in patients with HIV.

Numerous studies have previously examined the impact of influenza vaccination on patients with HIV. However, these produced inconsistent results and many were conducted before the introduction of effective antiretroviral therapy.

There were therefore unanswered questions about the efficacy of vaccinations.

So in 2009 investigators in South Africa undertook a study to compare the effectiveness of the vaccine against influenza A H1N1 (swine flu) in HIV-positive and HIV-negative patients. All were aged between 18 and 50 and received a single dose of the vaccine via injection.

The HIV-positive patients had a median CD4 cell count of 581 cells/mm3 and 82% were taking antiretrovirals. Despite having well-preserved immune function individuals with HIV were significantly less likely than HIV-negative patients to develop protective antibodies against influenza after receiving the vaccine (56% vs. 80%, p = 0.003).

Some investigators have suggested that the provision of additional doses would improve responses to influenza vaccination among patients with HIV. This question was examined in a German study.

A total of 135 patients were recruited and received two doses of the H1N1 vaccine. Antibody responses were monitored 21 days after the administration of each dose. After the first injection, 68% developed protective antibodies. This increased to 92% after the administration of the second injection. A higher CD4 cell count was associated with antibody responses to the vaccinations.

There are also questions about the impact of influenza immunisation on CD4 cell count and viral load and the clinical effectiveness of vaccination. These issues were addressed in a third study published in the journal.

The research was conducted in South Africa and involved 506 HIV-positive adults, 349 of whom were taking antiretroviral therapy. The patients were randomised to receive the trivalent, inactivated influenza vaccine. The World Health Organization recommended this vaccine for use in the Southern Hemisphere in 2008.

Dr Dolin praised the study as “well-designed and conducted.” However, he noted that patients with more advanced HIV infection were excluded from participation in this study, as were those with co-morbidities that are associated with influenza complications.

Vaccination did not reduce CD4 cell count or increase viral load among the patients taking HIV therapy.

In addition, receipt of the vaccine reduced the risk of laboratory confirmed influenza by 76%.

Recommendations that patients with HIV should be vaccinated against influenza are therefore justified and individuals should be encouraged to receive them, concluded Dr Dolin.

He added that efforts are still required to improve immune responses to vaccination, and studies should be undertaken on the effects of “additional doses, modified vaccination regimens, and novel adjuvants and novel influenza vaccines in this patient population.” 

Share this

The Scarlet Letters: HIV and Adolescent Life in Africa. 2010

"Because I've tested myself and I've tested my children," Rose said, "I've managed to get a grandchild who is HIV-free"

The Atlantic

Stephan Faris

The last time I was in Kampala, I met a brother and sister who had contracted HIV from their mother. The boy, whom I will call Peter (I've also changed the names of his friends and family), was just two days shy of his 16th birthday, and betrayed no visible signs of sickness. When I was introduced to him, in the Uganda offices of the Elizabeth Glaser Pediatric AIDS Foundation, not far from the city center, he was wearing his school uniform, a dark- green sweater over a white collared shirt. He looked a little bookish, with a round face, thin wire-rimmed glasses, and hair cropped tight to his skull.

I sat with Peter at the corner of a long conference table, and he quietly told me his case history. He'd been sick often as a child, he said, fighting off fevers, diarrhea, painful blisters, and hacking coughs. But it wasn't until he was 10 that he learned that he was infected with HIV. His mother, then expecting her sixth child, had tested positive during a prenatal HIV test and brought her children in to be examined. In Uganda, patients qualify for anti retroviral treatment when their CD4 count, a rough measure of the health of the immune system, falls below 250. Peter's clocked in at 54. He was immediately started on medication, a cocktail of pills taken twice a day.

With treatment, he remembers, his health improved quickly and dramatically. But then, at age 13, the markers of his illness returned: diarrhea, fevers, vomiting. While we spoke, he pulled up the sleeves of his sweater to show me where the rashes had come back. "These are scars from them," he said. "They come like sores, too many sores. When you scratch it, there comes a wound."

Not coincidentally, 13 was also the age at which Peter had begun boarding school--a common form of education in Uganda, even for low-income families. He lived in a cramped dormitory with about 40 other children and little privacy. Peter was keen to keep his condition secret, so he had arranged to store keep his pills in the assistant headmaster's office, on the far side of the school. "I had to wake up very early in the morning, before anyone sees me, to go in and take the medicine," Peter told me. "And then I had to come back, prepare myself, go to classes." In the evening, he would trek to the office again for another dose. But his office visits did not go unnoticed, and one day a couple of classmates walked in on him while he was taking his pills. Peter told them that the medication was for asthma, but they didn't believe him.

Their suspicions were confirmed, more or less, by Peter's English teacher, a tall, skinny man from northern Uganda, who would lecture the class on the evils of AIDS. "He would say, 'Some of us in class here, they didn't tell us they're HIV- positive. But we teachers, we know,' " Peter said. "He used to point at me, so that my friends started asking me, why is he always pointing at me." The man grew disdainful, calling Peter "useless" and "good for nothing," refrains quickly picked up by the children.

The taunts become more direct. When Peter coughed, a classmate would call out, "Remove your HIV from us!" "You didn't abstain well," a fellow student would sing; you're "a disgrace to your parents," another would jeer. A few close friends refused to believe the rumors, but mostly, the students shunned him. "You would give them something to eat, they would refuse it," he said. "They don't like sitting with you. They don't want to share anything with you." His peers began calling him a "zombie," Peter said, "someone is dead but still walking." Some older kids at the school began bullying and beating him.

For a while, Peter tried to sidestep his problems by skipping school. He'd sneak off campus in the morning to play soccer with local boys. But at some point during the school year, his avoidance took a different turn. Tired of the twice-daily office visits, of the constant needling, of being reminded day after day of his condition, he simply stopped taking his pills. "For me, it felt good," he said. "Because I knew I was going to leave those people who were discriminating against me and go somewhere else."

What followed was entirely predictable: Peter's health deteriorated rapidly, and his classmates shunned him all the more aggressively. Bouts of illness would leave him dehydrated and exhausted. One friend, a young man named Andrew, stayed true to Peter, helping him gather his books when he was strong enough to attend class--and nursing him when he wasn't. "He would wash me," said Peter said, "because I wasn't having strength to wash myself." As Peter's health worsened, Andrew sought permission to bring him back to his mother, and eventually took him to her, carrying him home on his back. Andrew refused to believe his friend was suffering from AIDS, Peter told me. And Peter never managed to tell him. "He's my closest friend," Peter said. "He knows everything about me. But I've failed to tell him that I'm HIV-positive."

When I met Peter, he was back on his medication--his hiatus had lasted about six months--and he looked healthy. His mother had gotten him medical care when he came home, and when his story came out, she got him free counseling as well, and enrolled him in a Catholic day school, where it would be easier to hide the fact that he was taking pills. But his lapse was not without permanent consequences. The virus in his body had become resistant to the treatment he had been taking, and his doctor had switched him onto an alternate regimen. When I asked Peter what he envisioned for his future, he told me he wanted to become a lawyer to help people in his community. His other hope, he said, was simply to survive. Taking medicine every day for the rest of your life is difficult, he said. He couldn't afford another mistake. "This is the second line," Peter told me. "And there's no third line."

A fatal disease can only be endured; a manageable one has to be managed. Perhaps 1.8-million Africans younger than 15 are living with HIV, the vast majority infected by their mothers during pregnancy, birth, or breast-feeding. In the developed world, transmission of the virus from mother to child has been all but eliminated. But in Africa, where caesareans are uncommon and many mothers can't afford to buy formula, an estimated 390,000 children younger than 15 were newly infected with HIV in 2008.

Until recently, African children born with HIV were expected to die young; roughly half never made it to their second birthday, and only 10 percent reached adolescence. But a massive rollout of anti retroviral medication, begun in 2003 and largely funded by the United States, has dramatically changed the picture. Today, more than 2 million people in sub-Saharan Africa are taking anti retroviral drugs (including 200,000 Ugandans), up from fewer than 50,000 in 2002. More than a million lives have already been saved as a result of the program, the largest public-health effort ever devoted to a single disease, and perhaps the most positive legacy of George W. Bush's presidency.

Sabrina Bakeera-Kitaka, a doctor at the Pediatrics Infectious Diseases Clinic in Kampala's Mulago Hospital, remembers opening a clinic in 2003 for adolescents who had been wrestling with the virus since infancy. "They were really short, stunted, and very wasted," says Bakeera-Kitaka. "You'd have a 16-year-old girl who hadn't started her menstrual cycle, or who hasn't developed any breast development, a 17-year-old boy who hasn't gotten any pubic hair. They were riddled with all sorts of diseases: tuberculosis, recurrent malaria, persistent diarrhea." But the drugs have changed all that. Today, Bakeera-Kitaka's patients are indistinguishable from their healthy peers.

In 2008, the World Health Organization began recommending that all infants born with HIV be medicated immediately. As treatment continues to roll out, more and more children like Peter will have a chance to reach adulthood.

Yet the teenage years, when not-yet-mature patients begin to take responsibility for themselves, are perilous for bearers of a chronic disease. Doctors studying diabetes track hemoglobin levels to measure how well a patient is sticking with the treatment. These tend to shoot up as children approach adulthood. "Obviously they're not taking as good care of themselves as when their parents were in charge," said Laura Stoppelbein, a psychology professor at the University of Mississippi Medical Center, who has studied treatment adherence among diabetics. "Adolescents don't tend to have a great appreciation for the long term. It's more like, 'My friends are here, and I don't want to be embarrassed and have to get my blood checker out or take a shot, so I'll skip it.' As opposed to thinking, 'In the long term, if I continue to skip, I'm going to have kidney disease or eye problems or circulation problems.'"

AIDS is easier to control than diabetes. Rather than having to continually monitor blood sugar in order to regulate their insulin level, patients simply need to take pills once or twice a day. Once firmly established on a treatment regimen, they can check its progress with their doctor as seldom as twice a year. But for HIV-positive people in places like Uganda, there are also a lot more reasons therapy is likely to fall apart. Shattered families, poor education, or the lack of bus fare to the clinic can come between a patient and the medication. "Many of those who fail on their treatment have poor social support," said Kitaka. "They have multiple caregivers. They are in boarding school."

The stigma of HIV is crushing in Uganda, as in much of Africa, and the incentives to hide the disease are immense. Many infected people are forced by their family members to use their own cups and plates, which are kept segregated from the family's dinnerware. When money is tight, infected children are the first to be pulled from school. The sense of shame is so strong that some HIV-positive mothers will breast-feed their babies, at the risk of passing on the virus, rather than raise suspicions. "Her relatives will be asking her, 'Why aren't you breast-feeding this baby?' " Kitaka told me. Because the disease is associated with sex, its victims are typically regarded as sinful, licentious, undisciplined--and unworthy of sympathy.

Among adolescents--prone, the world over, to easily mix judgment, hypocrisy, and naïveté--these sentiments seem particularly sharp. And for those who slip up in their treatment, the consequences can be unforgiving. "You don't get many chances in Africa with medication," said Yuka Manabe, head of research at the Mulago Hospital's Infectious Disease Institute and a professor at Johns Hopkins University. Whereas in the United States, 24 different drugs can be combined into many different types of therapies, options in the developing world are limited. "You get a first-line regimen, and you might get a second-line regimen if you're lucky," Manabe said. In a region where finances form the barrier to the availability of drugs, allowing the virus to build up resistance has dire consequences. "For every person that goes on second-line therapy here, nine people will [have to be denied] first-line therapy," Manabe explained--the alternate treatment is that much more expensive. "These are tough decisions. Is your first allegiance to the people who have been on? Or should it be on trying to give as many people access as possible? And if you blow it, 'Sorry'?"

Peter's sister, Beatrice, has never been sick. Nineteen years old, with delicate cheekbones, a small nose, full lips, and thin eyebrows, she wears her hair straightened and parted. When I met her at the offices of the Elizabeth Glaser Foundation, she was wearing a tight, sleeveless yellow T-shirt with California in pink across the front. While we spoke, she wrapped a blanket around her shoulders against the chill of the air conditioner. She didn't look like a woman who has grown up with the virus, and indeed, although she'd started medication within the past year, she'd been asymptomatic her entire life.

When she learned she was HIV-positive, Beatrice told me, she didn't really believe it. "I thought it was a bad joke," she said. "But as time went on and my brother still went on being sick, I really realized it." She was 15 years old, still in school. Overwhelmed, she soon dropped out and ran away from home, staying for a while with a group of musicians. For a long time, she behaved as if she had never been told she was infected. Medication was unnecessary--her CD4 counts were still high. She had a boyfriend, a young barber named Jeremy, whom she had met at a nightclub when she was 14. She didn't tell him she was HIV-positive, and she continued to have sex with him after she found out; eventually, she moved in with him. Only after discovering that she was pregnant last year did she begin to take steps to control the virus, enrolling in anti-retroviral therapy to avoid transmitting HIV to her baby.

Beatrice wasn't a model patient, she told me, sometimes skipping her medicine when she couldn't bear the thought of taking it and hence affirming her condition. She still didn't tell her boyfriend that she was putting him at risk. He found out only by accident, when a local newspaper published Beatrice's picture and name in a story about living with AIDS, reported during a counseling session she had attended. "He showed me the newspaper, the whole story about my family... everything," Beatrice said. "My brother's name was there. My mother's name was there. My name. My photo." He was furious, she said, and threw her out of the house. "He told me, 'Bea, please go away. Get out and go away. I don't want to see you in my life again. Plus your baby, go! If you want him to die, bring him here. I'll kill him, and [so what if they] put me in prison, because I know I'm also dead.'"

The newspaper story transformed Beatrice's life. "Whenever you pass someone, they call to you, 'Hello, I saw you in that newspaper. You're sick. You're HIV-positive.' I just keep quiet. I walk away. And then another tells you that. Another one tells you that." Beatrice seldom goes to the discothèque where she met Jeremy anymore--she'd see too many familiar faces, few of them friendly. Most nights, when she can scrape together the money, she drinks beer by herself in the small room she now rents, far away from her old neighborhood. "For me, nowadays, I live alone, stay alone, sit alone," she said. Sometimes she goes to a nightclub far from her house where nobody knows her. If someone tries to pick her up, she just leaves.

I asked Beatrice why she took precautions to protect her baby, but not her boyfriend. "I didn't trust him so much," she said. "At first, he moved with too many girlfriends. Whenever I'd come, I'd find four or five condoms. I'd find women there... But for the baby, it was so innocent. I thought of him being sick, me being sick, my mother being sick. So I rushed to the hospital."

I asked if she would tell her next boyfriend about her disease. "For sure I will not tell him," she said. "I know what I've faced. If I tell him, I know that he is also going to drop me." She was fatalistic about the further spread of the disease, and her own role in it. "You can't tell me that someone can abstain from loving someone. And you can't stay with someone for four years and still use condoms."

As treatment for AIDS becomes more widely available, more and more children living with HIV will reach an age when they and their peers begin falling in love. "In the past, they would be so sick, they would be busy trying to keep alive for one extra week, for one extra month, for one extra year," said Peter Mugyenyi, the head of Uganda's Joint Clinical Research Center, the largest provider of anti retroviral drugs in Africa. "But now they are healthy. They are energetic. Their sexual drive is back. You have to start addressing sexuality in the era of AIDS treatment, as opposed to sexuality in the era of AIDS death."

When Sabrina Bakeera-Kitaka polled HIV-positive adolescents in her clinic, she found a wide variety of sexual experience, but little sexual knowledge. One in four of the patients she surveyed reported having had sex. One respondent counted 13 partners. Three couldn't remember how many partners they had gone to bed with. Of the 800 adolescents enrolled in her program, more than 40 girls were expecting children or had already become parents. "Some of them have this thing, that 'I have to leave a legacy,' " Kitaka said. " 'Mother died, and who knows if I'm not going to die?' Some have insinuated that people at home are pressuring them to get babies. In some societies in this country, if you don't have a baby by 18 years or so, then you're not a woman."

Bakeera-Kitaka's study also found that the patients in her program understood little about the risks to which they were subjecting their sexual partners. Some boys thought that semen did not carry HIV; some girls thought the virus would bleed away during menstruation. Most alarming, some said they wouldn't disclose their infection to their partners, out of fear of rejection--and that they preferred partners who were HIV-negative.

According to the United Nations, young people between the ages of 15 and 24 account for nearly half of the world's new infections. The public-health risk is compounded when adolescents struggle to keep up with their treatment. Medication lowers patients' viral loads and thus their infectiousness, but only if the regimen is accurately followed. Diabetes may be harder to control than AIDS, but skipping a shot doesn't make diabetes stronger or increase the chances you'll pass it on. As Bakeera-Kitaka said, "There's no bigger catastrophe than having a whole group of adolescents spreading a resistant virus."

Peter and Beatrice's 41-year-old mother, Rose, lives on the outskirts of Kampala in a large house she built with her husband before he died suddenly in 1994. The electricity was out on the day I visited them. We sat on sunken couches in the living room; light shone through the doorway onto the bare concrete floor. The house was unfinished. Yellow walls rose up to meet bare rafters and the underside of the metal roof.

The newspaper article that upended Beatrice's life affected her mother's as well. Rose had taken in Beatrice's son, a round-cheeked 8-month-old boy we passed from lap to lap while we talked. She had scraped together enough money to help with her daughter's rent, but she herself had stayed behind, and she has continued to endure scorn from her neighbors. "People don't want their children to come and play with my children," she said. She pointed to a pile of bricks in the yard: "I want to fence myself in and stay inside."

As better access to medication slowly turns HIV from a death sentence into a chronic disease, one might think that the shame associated with its impacts--emaciation, infirmity, death--would start to fade. That may yet happen in Uganda, but it hasn't so far. Indeed, in some respects, the shame has only grown. In part, that's Bush's other African legacy: the flood of anti retroviral drugs has been accompanied by a rising emphasis on a rigid morality. Until 2008, the U.S. AIDS plan contained an explicit requirement that one-third of the resources dedicated to preventing new infections be directed toward programs promoting abstinence. The Ugandan government, which once tackled the disease head-on with blunt advice on condoms and slogans like "zero grazing," has purged explicit images from AIDS-education materials. Illustrations depicting correct condom use have disappeared, supplanted by material on "ethics, morals and cultural values." ("For pupils, sex leads to great sadness," reads one snippet.) "Instead of understanding the disease as a public-health crisis," said Joseph Amon, the director of Health and Human Rights at Human Rights Watch, "it became understood as a test of moral character."

Prominent Ugandans have picked up this banner. The first lady, Janet Museveni, attempted to conduct a "virgin census" at the country's main university. One Ugandan parliamentarian proposed offering "chastity scholarships" to girls who could prove they had never had sex. Cultural notions of sex and morality are of course shaped by many forces; government policy is only one of them. Nonetheless, with more and more people living long lives with HIV, many from birth, a single-minded message of abstinence and morality seems not just counterproductive, but dangerous. Admitting that you carry a potentially deadly infectious disease and taking responsibility for containing it are hard enough; the near-certainty of censure by your friends and neighbors can make responsible action almost impossible.

It seems unrealistic to base policies on the expectation that asymptomatic HIV-positive youth will permanently abstain from sex, and foolish to drive them underground and away from the medication they've relied on since childhood. Today, the spread of resistant forms of the virus is still relatively rare in Africa, though it is said to be rising. And while resistance is limited, for the most part, to the most common anti retroviral regimens, the more expensive treatments available in other parts of the world are unaffordable to most Africans, so it's troubling to see the virus beginning to break through the first fire walls.

Before leaving Rose's home, I asked her how she was dealing with the rejection by those around her. "They can talk," she said. "It's up to them." The important thing was that she had learned her HIV-positive status and knew she had to take her drugs. "Tomorrow they could die," she said. "I will still be here. I know what I am, and I know what to do." In addition to infecting Peter and Beatrice, Rose had transmitted HIV to her youngest son. Half of her children carried the virus. As she spoke, Rose gazed at Beatrice's son, who was on a couch by the door, playing with Peter. For the baby, the prevention methods had worked. "Because I've tested myself and I've tested my children," Rose said, "I've managed to get a grandchild who is HIV-free," she said.

Share this

Ageing with HIV a New Reality for Many Over 50. 3/12/10

Rise in HIV infections in middle aged and older

3 December 2010

One January day in 1991, career journalist Jane Fowler, then 55, opened a letter from a health insurance company informing her that her request for coverage had been denied due to a "significant blood abnormality."

This was the first inkling later confirmed in her doctor's office that the Kansas City, Kan., native had contracted HIV from someone she had dated five years before, a man she'd been friends with her entire adult life. She had begun seeing him two years after the end of her 24-year marriage.

Fowler, now 75 and healthy thanks to the advent of antiretroviral medications, recalls being devastated by her diagnosis.

"I went home that day and literally took to my bed. I thought, 'What's going to happen?'" she said. For the next four years Fowler, once an active and successful writer and editor, lived in what she called "semi-isolation," staying mostly in her apartment.

Then came the dawning realisation that her isolation wasn't helping anyone, least of all herself.

Reaching out

Fowler slowly began reaching out to experts and other older Americans to learn more about living with HIV in life's later decades. By 1995, she had helped co-found the National Association on HIV over 50. And through her program, HIV Wisdom for Older Women, Fowler today speaks to audiences nationwide on the challenges of living with the virus.

"I decided to speak out to put an old, wrinkled, white, heterosexual face to this disease," she said. "But my message isn't age-specific: We all need to understand that we can be at risk."

During a recent White House forum on HIV and ageing, at which Fowler spoke, experts presented new data suggesting that as the HIV/Aids epidemic enters its fourth decade those afflicted by it are aging, too.

Rise in HIV infections in middle aged and older

One report, conducted by the Aids Community Research Initiative of America (ACRIA), noted that 27% of Americans diagnosed with HIV are now aged 50 or older and by 2015 that percentage could double.

Why? According to Dr Michael Horberg, vice chair of the HIV Medicine Association, there's been a societal "perfect storm" that's led to more HIV infections among people in middle age or older.

"Certainly the rise of Viagra and similar drugs to treat erectile dysfunction, people are getting more sexually active because they are more able to do so," Horberg said. There's also the perception that HIV is now treatable with complex drug regimens, he said, even though these medicines often come with onerous side effects.

For her part, Fowler said that more and more aging Americans find themselves recently divorced (as she did) or widowed and back in the dating game.

And all too often, doctors fail to appreciate that their patients over 50 might still have active sex lives, so the possibility of sexually transmitted diseases is often overlooked.

Testing too late

"Often, they're tested [for HIV] too late," Fowler said. "Many have already been diagnosed with full-blown Aids. In fact, that's often how the diagnosis comes." At that point, it's much tougher for Aids drugs to do their job of suppressing HIV.

Aging with HIV presents other problems, as well. According to ACRIA's survey of about 1,000 HIV-positive men and women, 91% are battling other chronic medical conditions associated with age, including arthritis, neuropathies and high blood pressure.

Many are coping with these conditions on their own: 70% of older Americans with HIV live alone, the report found, more than twice the rate of their non-infected contemporaries.

Adding HIV and its often potent drug treatment to the usual troubles of aging can be tough. Speaking at the White House conference, Dr Amy Justice, principal investigator of the Veterans Aging Cohort Study, which involves more than 40,000 veterans with HIV, said: "There are a lot of [infected] people who are 60 or 65 or even 80 or 85.

These people feel older than their stated age and may have some of the same problems people 10 or 15 years older would normally experience."

Aging made worse by HIV/Aids

According to Horberg, many of the diseases of aging "are made worse by HIV or its treatment." For example, he said, the Aids drug tenofovir can impair kidney function, other antiretrovirals cannot be taken with cholesterol-lowering drugs such as Zocor or Mevacor, and it's suspected that HIV infection might even accelerate the onset of Alzheimer's disease.

Issues of HIV prevention and treatment can be especially tough on older women, said Diane Zablotsky, an associate professor of sociology at the University of North Carolina who's worked on the issue.

In terms of prevention, she noted that it may be tougher for a woman past menopause to negotiate condom use with a partner, when pregnancy is no longer an issue. And in terms of diagnosis and treatment, "if you have a woman experiencing night sweats and other kinds of symptoms is that menopausal change? A medication issue? Or is it an HIV-infection issue?"

All of the experts stressed that the key to curbing HIV infection in older Americans is the same as it is for the young; prevention. But that will mean having much franker discussions about sex.

"There's this myth that older people aren't sexually active," Fowler said. "Health-care providers could help by taking sexual histories, but they don't because they assume they don't have to. They can ask about smoking and alcohol use, but sex? Oh no, the person is old."

Zablotsky agreed. "The important thing is to reach out to older people in a way which, if in fact they are engaging in behavior that puts them at risk, they have a reason to say, 'I need to listen to this, I need to make this change, I need to protect myself.'"

Share this

One Woman's Story of Hope. 1/12/10

Mixed emotions on World Aids Day


By Bathandwa Mbola
1 December 2010

Soweto — Ntombi Zondi* of Pimville, Soweto, always gets mixed emotions on World Aids Day. Ten years ago to the day, Ntombi tested positive for HIV.

Ntombi, who is also a mother of two HIV negative children, is one of the millions of people throughout the country living with the virus.

Speaking to BuaNews at an event to mark World Aids Day, the 36-year-old says she would probably be dead if she was not taking anti-retroviral drugs.

"My decision to test for HIV had little to do with me being sick or suspecting that I have HIV. It was World Aids Day and I was curious to know my status," says Ntombi, whose red eyes are telling of emotion far deeper than words can express. She was 26 at the time and pregnant with her first child.

Reliving the day she was tested, Ntombi takes a long pause.

"I was in shock. All I could think about was how can this happen to me and why. I was in denial. I was still young and my future was bright."

Soon after testing positive, she started drinking almost everyday to hide the pain and the embarrassment.

"At that moment, I didn't care about the baby. But after a while, I started losing weight fast, then I start hearing about people around my age group dying of Aids and I started freaking out.

"I said to myself, I want to live as long as I can. I decided I'm not going to let this kill me. So I started going to the clinic," says Ntombi.

"I take my treatment (ARVs) everyday and I'm looking forward to a longer life. I'm 36-years-old now. It was 10 years ago when I [tested positive]. Look at me, I'm still here."

Ntombi says she also owes her longevity to the positive mind-set she adopted after attending counselling sessions and the support she got from friends and family.

"I told myself I am going to hold my head up high and do something positive about it."

She now juggles her part time jobs with that of being a counsellor for people living with HIV and Aids.

Apart from the training she got from a non-profit organisation dealing with HIV and Aids, Ntombi has no formal training but she says people feel at ease talking to her about their status.

"I let people know that they should not stop being what they want to be in life just because they are HIV positive. And I will continue to teach my peers about this until the stigma stops and until we find a cure."

Ntombi fiddles with the red ribbon pinned on her right breast pocket and before I can ask, she beats me to it and explains its symbolism.

"People often ask me why I wear this red ribbon. But I know that some are asking a hidden question: they wonder what experiences in my life have moved me so that I would want to wear a red ribbon everyday.

"My answer is always the same: I wear it because I can. I am still alive, still able to carry the message about the reality and urgency of Aids and how HIV can be prevented. I carry this message for those whose voices can no longer be heard, but whose presence can still be felt."

Although living with the virus was not easy, Ntombi says people should not see it as a death sentence but as an opportunity to create a better life.

I am moved by her passion and how easily she talks about her status. She says she decided to disclose her status in order to stop people from talking behind her back and to motivate others living with the virus.

It took Ntombi about six months to make her first disclosure. It was to her mother, who was disappointed at first.

"I did it because I wanted them to know the truth, that HIV is here and it doesn't matter how educated you are," she said, adding that she was also avoiding a scenario where people would gawk should her health take a turn for the worse.

At times, Ntombi admits that she gets depressed from thinking about her status. "Sometimes I feel I am not ready to die. My wish is to be with my family, especially my daughters, for years to come."

Asked if she has made peace with the father of her first child, who she claims infected her, Ntombi takes a deep breath and thinks before she answers.

"I was never mad at him for infecting me. I was mad at him for not wanting to talk to me afterwards but now I have made peace. I have a supporting family, boyfriend and friends who don't judge me."

Share this

Ten Years That Show HIV is Not a Death Sentence. 30/11/10

I decided to look at the flip-side.


By Lillian Onyangu
30 November 2010

Nairobi — As one prepares to have the much dreaded HIV test, many seek comfort in the counsellor's common phrase: "HIV is not a death sentence". Paul Gwada took those words seriously.

"Although I was saddened to find out I had the virus, I decided to look at the flip-side. I quit school for lack of fees after my parents died yet I've learnt a lot and today I work for organisations which seemed beyond my dreams ," says a beaming Paul, an infectious smile on his face.

He had hopes of playing for the national football team, Harambee Stars, but had to settle for business -- selling used items, staging video shows and painting in his Kaloleni neighbourhood.

But after two years, he was in and out of hospital, suffering from pneumonia and recurrent tuberculosis, so his doctor suggested the HIV test. He took time to make up his mind. For a month Paul weighed his options and eventually went for it.

The positive result got thoughts of his child, wife and thriving business flooding through his mind. He sought solace from his aunt who, in turn, introduced him to a support group.

"Talking to my wife about getting tested was difficult. After she too tested positive, we knew there was no time for a blame game," Paul said.

"Knowing my HIV status helped propel my life. I have since gone back to class to study HIV management and today I am peer counsellor and nutrition advisor," he adds.

When he had the second test, he was found to have a CD4 count of 5.

CD4 cells are a type of white blood cells and a vital part of the immunity system. HIV highly affects these cells by reducing their number. The lower the CD4, the higher the chances of falling prey to opportunistic infections such as meningitis, pneumonia and tuberculosis.

Dr George Taitumu of the SOS Medical Centre says: "A low CD4 count means high viral load and vice versa. It is advisable to test for viral load but because of cost, most just test for the CD4 count to give an impression of the viral load.

"It is opportunistic diseases that end up causing HIV related deaths as a low count means the patient is severely immuno-suppressed."

The higher the number the stronger your immune system. People without HIV infection have about 700 to 1000 CD4 cells in a drop of blood the size of a pea. HIV infected people are considered to have "normal" CD4 counts if the number is above 500 CD4 cells in that same size drop of blood.

One warning: It is important to test the vital organs of the patient, particularly the liver and kidney.

Should they be compromised, it would not be advisable to take the ARV therapy as the toxicity of the drugs would only worsen the condition of the organs, Dr Taitumu says. But the ARV therapy boosts the CD4 cell count, in turn reducing the viral load.

As the world marks 22 years since the inception of World Aids Day, Paul looks back on the 10 years he has positively lived with HIV and looks forward to many more.

Share this

The Lesser-Known Complications of HIV/AIDS. 29/11/10

Osteoporosis, a disease that's most commonly seen in older women, but that's also associated with HIV

The Huffington Post

By Erin N. Marcus
29 November 2010

At the age of 56, Jules Levin felt pretty invincible, despite being HIV positive. He went to the gym regularly and controlled his disease well by taking his antiretroviral medicines every day.

Then he slipped one day while on vacation and broke his wrist. He underwent an operation to insert pins in his bones and needed to wear a cast for a month, keep his arm elevated, and then do physical therapy for two months to get to the point where he could lift a five pound weight. "It was one of the most difficult things I've ever been through in my life," he said. "I ran, biked, lifted weights and now all of a sudden I couldn't turn the page of a newspaper. It just really got to me."

After a few simple tests, the reason for Levin's fracture became clear: His bones were weak from osteoporosis, a disease that's most commonly seen in older women, but that's also associated with HIV.

"The giddiness of the age of HAART is over," said Levin, referring to highly active antiretroviral therapy, the life-saving drug regimen prescribed to people with HIV. "We should have an aging clinic in every hospital that's serving HIV patients."

Osteoporosis is one of many conditions associated with old age that is now being seen with increasing frequency in people with HIV. Research suggests that long-term exposure to the virus, and to the inflammation it triggers, make people vulnerable to premature aging and to a host of conditions seen with aging, heart and kidney disease, dementia, and osteoporosis.

Additionally, the overall population of people with HIV is getting older, thanks to improved medical therapy. At present, 1 in 4 people with HIV is age 50 or older. The U.S. Senate Special Committee on Aging has predicted that half of all adults with HIV will be older than 50 by the year 2015. Over the past few years, the National Institute of Health has increased its funding for research on HIV and aging, and the White House hosted a conference on October 27 on HIV and aging.

"The evidence is pretty clear," said Levin, who directs The National AIDS Treatment Advocacy Project (NATAP), a New York-based HIV education and advocacy group. "We're going to see early frailty, early senescence and people are going to start dying at earlier ages."

Compared to other conditions associated with HIV and aging, osteoporosis is relatively straightforward to forestall and treat. To maintain bone strength, it's important for all people with HIV to make sure they are consuming an adequate amount of calcium and Vitamin D. A recent article in the journal Clinical Infectious Diseases recommends 1,000 to 1,500 mg of calcium and 800 to 1,000 IUs of Vitamin D daily, as well as at least 30 minutes of weight-bearing exercise, such as jogging or walking, at least three days a week. Calcium is plentiful in dairy products and sardines, and is available in supplements such as calcium carbonate and calcium citrate. The National Institutes of Health has an online information sheet listing ways to get calcium. It's also important to avoid smoking and heavy alcohol use, since these can cause osteoporosis.

HIV is thought to be associated with osteoporosis for a variety of reasons. The infection, itself, causes inflammation, which in turn impacts the cells that maintain bones. Many conditions common in people with HIV, such as Vitamin D deficiency, being underweight and low testosterone, are associated with osteoporosis. Antiretroviral therapy and other medications frequently prescribed to people with HIV, such as Prednisone, also cause bone loss.

Even though many antiretrovirals can cause bone loss, osteoporosis is not a reason to stop taking them. "Antiretroviral therapy is life-saving, and we know that stopping antiretroviral therapy is not a good strategy for preventing complications," said Dr. Todd Brown, an endocrinology specialist at Johns Hopkins University who co-wrote the article in Clinical Infectious Diseases.

Brown and his coauthors recommend that all HIV-positive men older than age 50 and women who are past menopause undergo testing for osteoporosis, since it's a condition that usually doesn't cause symptoms until the person breaks a bone. His own research has found that osteoporosis is "alarmingly" prevalent among African Americans in inner city Baltimore. "Because of the perception that osteoporosis is a white disease, people of color get short shrift for screening," he said. "This concept that African Americans are protected shouldn't be a reason to neglect them."

Once someone is diagnosed with osteoporosis, it's important to take action to prevent falling, such as removing clutter and slippery rugs from the floor. Physical therapy can help improve strength and balance, which also reduce the risk of a fall. The person also should get his or her vision checked and review his or her medication list with a doctor to try to minimize any drug side effects or interactions that might cause drowsiness or unsteadiness.

A class of medicines called bisphosphonates can improve bone strength, but do have some rare risks. "While they do decrease the risk of fracture, they're not totally benign drugs," Brown said. "On the flip side, you shouldn't not use them in the patient who is at high risk of a fracture."

Levin urges all people with HIV to be assertive about discussing osteoporosis and other age-related conditions with their doctor. "My guess is that 90 percent of patients know nothing about any of this and a lot of clinicians and case managers don't know about it either," he said. "Every patient should ask their clinician, 'are you aware, are you monitoring me for heart disease, diabetes, bone disease, cognitive impairment, kidney disease?' This is an important issue for everybody."

Share this

Life Insurers 'Living in Dark Ages' for HIV+ Clients. 23/11/10

Third of the top UK providers offer life policies to HIV positive people


By Owain Thomas
23 November 2010

Life insurers are ‘living in the dark ages’ and stigmatising HIV positive clients meaning their needs are not being met, according to research.

The survey conducted by intermediary Unusual Risks found that just a third of the top UK providers offer life policies to HIV positive people. And only two of the four who do so undertake a full pre-sales quotation procedure, meaning many people living with the disease are being asked to complete applications, submit to medicals and blood tests before any indication of the cost of insurance is offered. The adviser firm believes this is both non-competitive and unfair on applicants although it recognised that insurers have the right to decline applicants on medical grounds.

However, it felt that insurers were not dedicating enough attention to this developing market or taking the needs of HIV Positive people seriously enough. Chris Morgan, marketing manager of Unusual Risks, was shocked and concerned by some of the responses from the providers it contacted about HIV life assurance. "Only four responded yes, with some of the remaining companies even appearing shocked we had asked the question," he said. "Some of our findings and answers received from insurers regarding HIV life assurance are completely worrying.

It is apparent that the majority of companies are still living in the dark ages and attaching a stigma to HIV. "The survey established that either companies are avoiding the issue completely by not offering cover, or in the main offering completely inadequate, over-priced products and services to HIV positive applicants.' The four providers who originally said they would cover HIV positive clients, only two, Prudential and Zurich, accepted the test case put to them by the adviser.


Share this

AIDS-Related Deaths Continue to Fall, Diseases of Ageing and Lifestyle on the Rise in People with HIV. 28/4/10

Mortality due to AIDS fell, but mortality due to non-AIDS-related diseases, such as lung cancer, increased.

AIDSMap News

By Michael Carter
28 April 2010

Lifestyle and social factors need to be addressed if the full potential of HIV treatment to lower mortality is to be realised, according to results from a large cohort study published in the May 15th edition of Clinical Infectious Diseases.

Diseases associated with ageing but nevertheless influenced by HIV infection, and risk behaviours associated with HIV infection, such as cardiovascular disease, non-AIDS-defining cancers, kidney disease and liver disease, are the causes of death in a growing proportion of people with HIV, while deaths from AIDS-defining causes such as opportunistic infections and AIDS-defining cancers have fallen over the past ten years.

Investigators from the international Antiretroviral Therapy Cohort Collaboration examined recorded causes of death amongst patients taking HIV treatment in Europe and North America between 1996 and 2006. Mortality due to AIDS fell, but mortality due to non-AIDS-related diseases, such as lung cancer, increased.

Their retrospective analysis included 13 studies, which included a total of 39,272 patients.

These individuals contributed a total of 154,667 person-years of follow-up, the median duration of follow-up for each patients being a little under four years.

At the time HIV treatment was started, the patients had a median age of 37 years. The median calendar month when antiretroviral therapy was initiated was December 2000. The majority of patients (62%) took a combination that included a protease inhibitor.

There were a total of 1876 deaths (5%). The overall mortality rate was 12 deaths per 1000 person-years. Those who died had a lower median CD4 cell count at baseline (110 cells/mm3) than those who survived (217 cells/mm3).

A cause of death was recorded for 1597 patients. Almost half (49.6%) were due to AIDS. When the investigators looked at the AIDS-related mortality in further detail, they noted that 23% of all deaths were due to AIDS-defining infections and 15% to AIDS-defining cancers.

Non-AIDS-defining cancers were the next most common cause of death (12%). Over a third (37%) of non-AIDS-defining cancer deaths were caused by lung cancer.

Infections not considered AIDS-defining caused 8% of all deaths, and 8% of deaths were also attributed to cardiovascular death. Violence accounted for 8% of deaths, liver disease for 7%, respiratory diseases for 2% and renal failure for 2% of mortality.

The cause of death changed over time. The proportion of AIDS-related deaths fell from 58% in 1996-99 to 44% in the period 2003 to 2006. The percentage of deaths due to AIDS-defining cancers fell from 21% in the earlier period to 13% after 2003.

However, at the same time non-AIDS-defining cancers became an increasingly important cause of death. The proportion of deaths attributed to such malignancies more than doubled from 7% before 1999 to 15% in the period between 2003 and 2006.

A low CD4 cell count was associated with an increased risk of death from non-AIDS-related cancers (HR per 100 cell/mm3 fall = 1.43; 95% CI, 1.34 to 1.53)and renal cancers (HR per 100 cell/mm3 fall = 1.73; 95% CI, 1.18 to 2.55).

“The strong inverse association of rates of death due to AIDS with CD4 cell counts at the time of starting antiretroviral therapy supports arguments for earlier initiation of antiretroviral therapy,” comment the investigators.

A baseline viral load above 5 log10/copies/ml was significantly associated with an increased risk of death due to AIDS (HR = 1.31; 95% CI, 1.12 to 1.53), infections (HR = 1.85; 95% CI, 1.25 to 2.73), cardiovascular disease (HR = 1.54; 95% CI, 1.05 to 2.27), and respiratory disorders (HR = 3.63; 95% CI, 1.30 to 10.09).

“Systematic immune activation secondary to high viral replication, rather than additional or additional to immunodeficiency, may promote death from infections and cardiovascular disease,” write the study’s authors.

Mortality rates for all causes with the exception of renal disease were higher for injecting drug users than other risk groups. Especially strong associations between injecting drug use and death due to liver disease, respiratory illnesses, violence and infections were observed.

Older age was strongly associated with an increased risk of death from non-AIDS-related cancers (HR per 10 years = 2.32; 95% CI, 2.04 to 2.63), and cardiovascular disease (HR per 10 years = 2.05; 95% CI, 1.76 to 2.39). The rate of kidney-related death was especially high amongst patients aged over 60.

The investigators believe that these results “imply that the process of aging will become a dominant factor in HIV mortality in the next decade.”

Overall, mortality rates were 16% were lower in women in men. In addition, women were 50% less likely than men to die of non-AIDS-related cancers.

As the duration of antiretroviral therapy increased, the risk of death from AIDS, non-AIDS-related infections, and kidney disease decreased (p < 0.001).

Starting HIV therapy after 2000 was associated with a significant reduction in the risk of death due to AIDS (p < 0.001).

“Antiretroviral therapy continues to dramatically reduce rates of mortality attributable to HIV infection in high-income countries,” conclude the investigators.

However, they express concern about the high mortality rates due to conditions “associated with social and lifestyle factors…the importance of lifestyle is reinforced by the observation that the most common non-AIDS malignancy was lung cancer, likely caused by smoking.”

The investigators believe that these findings have implications for the care of patients with HIV. They suggest: “interventions to address risk factors for lifestyle-related causes of death, as well as monitoring for and care of diseases associated with old age, will be necessary if the full benefit of antiretroviral therapy in decreasing mortality is to continue n the second decade of antiretroviral treatment.”

The Antiretroviral Therapy Cohort Collaboration. Causes of death in HIV-1-infected patients treated with antiretroviral therapy, 1996-2006: collaborative analysis of 13 HIV cohort studies. Clin Infect Dis 50: 1387-96, 201

Share this

ARVs Gave me my Life Back. 1/12/olescents Living with HIV Face Complex Psychosocial Concerns: Require Targeted, Comprehensive Services. 20/7/1010

“I think I would be dead by now had I not started treatment,”


By Lungi Langa
1 December 2010

When a tall and scrawny Bongani Masalaza (37) of Khayelitsha was diagnosed with HIV in 1997 there was no antiretroviral (ARV) treatment available and he would battle to survive for 11 long years before he finally accessed the life prolonging drugs.

 “I lost a lot of weight and couldn’t do anything for myself. My father who was a pensioner would wash me because I was too weak to do so myself. That time my understanding was that if you had HIV it meant you had AIDS. You would surely die,” said Msalaza..

Before his diagnosis Masalaza was not eating well and had heavy diarrhoea – he weighed 33kg.

“Even my feet were painful all the time. I could see that there was something wrong with me. So I went to the clinic where I tested positive for HIV,” he said.

However, a few months after his diagnosis, an unemployed Masalaza said he went back to the clinic where he was told he had Tuberculosis. He took his TB treatment for six months.  He also recalls being put on Vitamin B complex and Bactrim in 2007.  But he was still ill.

“I continued to get sick. I went to the clinic again to find out what was happening. After running some tests the nurses told me that I had TB again. This worried me because it was the second time I was getting TB. This time I was told that I would have to take treatment for eight months,” he said.

He said his CD4 count was 120 and he was weak. In January 2008 he was put on ARV treatment because the nurses saw that “I was too sick not to start treatment”.

“When I started the treatment it was difficult to take my pills. I always felt queasy after taking treatment. I then insisted that my sisters crush some of the pills into powder, especially efavirenz (one of the ARVs), before I could take it because it was too big. There were times when I felt I wanted to give up on treatment, but I would think of my health. I knew there was nothing else that could help me,” he said.

Now thriving with a CD4 count above 500 and weighing 62kg, Masalaza urges all patients on treatment “to stick to their treatment” even if it is at times tough due to side effects.

“I think I would be dead by now had I not started treatment,” he said


Share this

Adolescents Living with HIV Face Complex Psychosocial Concerns: Require Targeted, Comprehensive Services. 20/7/10

The needs of adolescents living with HIV are much more sensitive and varied than those of adults


By Mara kardas-Nelson
20 July 2010

As the number of young people living with HIV increases internationally, new and innovative ways to talk about sex, disclosure, and health need to be developed for HIV-positive adolescents.

According to a panel presenting at the Eighteenth International AIDS Conference in Vienna, the needs of adolescents living with HIV are much more sensitive and varied than those of adults, as they must simultaneously deal with 'adult' issues like disclosure, practicing safe sex, and adhering to treatment, while also addressing issues traditionally associated with adolescence, such as body image, first sexual experience, peer pressure and forming personal identity.

Jasna Loos of the Institute of Tropical Medicine in Belgium presented the findings of a formative needs assessment conducted amongst HIV-positive young people in Kenya and Uganda. Considering the categories of body image, sexual identity, increased importance to peers, envisioning the future, and independence – all central themes within adolescent development – Loos noted that HIV-positive young people concurrently felt empowered and excited about growing older, while also being weary of the potential restrictions and increased responsibility resulting from their HIV status.

With regards to body image, respondents felt that puberty and growth offered a new start and chance to transform from a social outsider to that of a social insider, as those previously sickly in appearance and smaller than their peers grew into healthy adults. Peer influence was central to understanding sexuality, sexual norms and identity, with positive adolescents attempting to mirror so-called 'normal' behaviour. Due to notions of AIDS as a deadly virus, Loos notes that many adolescents “lived in the moment” and wanted to get “the most out of a life with HIV”. In reality, this often resulted in early first sexual experience, as young people “did not want to die without having sex”.

Loos notes that, as yet, there are few evidence-based interventions to help positive adolescents in coping with such issues. Based on the findings of the study, she suggests that sexual and reproductive health be fully integrated with HIV services, specifically by building upon existing resources; that providers focus on a holistic approach and do not rely on 'one-size-fits-all' programmes; and that service providers focus on building trust with adolescents.

Sabrina Bakeera-Kitaka from Kampala’s Mulago Hospital discussed adolescents’ experiences in disclosing status to their peers, friends and family. A study conducted at Mulago assessed the experiences of ten men and ten women who were taking ART, and followed them through the process of disclosure. Partner disclosure proved to be most challenging for the participants, who cited fear of rejection, and loss of respect and care, if their status became known. Participants also said that they did not want to disclose to their family members in order to protect them from “distressing information”. Generally, however, disclosure proved to be a “pivotal step in their lives”, often resulting in positive life changes including increased care and support, both financial and emotional.

In addition to psychosocial and behavioural concerns, a recent conducted at the Family Care Center at Harlem Hospital in New York City looked at the effects that the virus has on neurocognitive functions among HIV-positive adolescents living in a poor, urban area. While several other studies have focused on neurocognitive and behavioural effects from viral infection, questions have arisen as to whether these effects stem from HIV and opportunistic infections specifically or, rather, are a result of social factors affecting those most affected by the virus – such as poverty, poor education, and single-parent households. Affected neurocognitive functions include fine motor strength, language, executive skills and memory, academic achievement, and general cognitive ability.

The Harlem study attempted to consider the “neighborhood question” by assessing neuropsychological test results, ART regimen, CD4 count and demographic information amongst adolescent patients. While all study participants displayed some sort of learning or behavioural disorder, the study found that “environmental influences on neurocognitive functioning may be negligible given the impact of advanced HIV infection and psychiatric illness.” As such, high rates of psychiatric illness among HIV-positive adolescents require increased prevention and intervention strategies.

Interestingly, panelists noted that differing experiences for adolescents generally depended on whether an individual was infected through neonatal or postnatal exposure. However, this is currently an anecdotal observation, and requires further exploration before conclusions can be made.

Treatment adherence also poses a significant challenge for adolescents living with the virus, regardless of how they became infected. Ana-Maria Schweitzer of the Baylor College of Medicine, highlighting her work in Romania, noted that 60% of adolescents will struggle with adherence at some point. In her study, adherence was affected by misconceptions surrounding the need for good adherence, as well as by fears of unwanted disclosure and frustrations stemming from a sense of limited freedom associated with a treatment regimen.

Of central concern to young people living with HIV is the question of transition in treatment throughout the adolescent years. Bakeera-Kitaka’s Mulago Hospital currently houses a 'transition clinic', which attempts to facilitate patients’ movement from child to adult care. This programme has seen the majority of patients successfully making the transition from one to the other. However, more research and discussion is needed to understand best practices in this regard.

Share this

Africa: The Dilemma of Discordance. 20/7/10

Discordant couples are increasingly common in African countries with high prevalence

20 July 2010

VIENNA, 20 July 2010 (PlusNews) - Discordant couples, in which one partner is HIV-positive and the other HIV-negative, are increasingly common in African countries with high prevalence, but there is often little support to help them navigate the complexities that the virus adds to a relationship.

"The research and programming ... has largely had a biomedical focus. There is a black hole of information when it comes to the psycho-social aspects of HIV discordance," Kevin Moody, international coordinator of the Global Network of People living with HIV (GNP+), said at the International AIDS Conference in Vienna, Austria.

A 2008 study by GNP+ among discordant straight and gay couples in South Africa, Tanzania and the Ukraine found that they dealt with a raft of issues, from achieving intimacy to disclosure and dealing with discrimination.

"HIV-positive people are living longer, are healthier and are remaining sexually active," said Monique Tondoi, a social economist at Women Fighting AIDS in Kenya (WOFAK), who has been married for 20 years and living with HIV for 16.

"We need to know what choices are out there for HIV prevention, whether we can have children ... how to talk to our families about the diagnosis. You don't want to infect your partner, but you still want the intimacy, the love that comes with sex, so you need to know how to go about it."

The reproduction conundrum

Tondoi said that societal pressure on African women to have children was a particular concern.

Discordant couples are usually advised to use condoms to prevent HIV infection. Those wanting to conceive are sometimes encouraged to use assisted reproductive methods such as in-vitro fertilization (IVF), which are often prohibitively expensive. In many cases, couples are not given enough information to make an informed decision.

Research suggests that antiretroviral (ARV) therapy can lower viral load (the amount of virus in the blood) to undetectable levels, so discordant couples can have unprotected sex during the fertile days of a woman's cycle with very low risk of the HIV-negative partner becoming infected.

However, until more data is available to back up such findings, said Moody, "We prefer to err on the side of caution and advise correct and consistent condom use.”

Other options for HIV prevention among discordant couples are non-penetrative sex and abstinence, but African women rarely have a say as to when they will have sex, and are often coerced into having unprotected sex that could put them or their partner at risk.

"I consider myself to be an empowered woman, but even I have to fight with my husband about using a condom - he hates it," Tondoi said. "So imagine a woman in the village; how is she to protect herself, or protect him?"

Couples counselling

"Some of the reasons couples who are aware of their discordance might have unprotected sex are logistics, such as obtaining and ensuring you have a condom nearby," said Kristin Dunkle, lead author of a study on HIV transmission in marriage in Rwanda and Zambia, which recommends promoting voluntary counselling and testing for discordant couples.

After counselling, women in the study were able to strategically position condoms around the house so that if their husbands returned home drunk, they were quickly able to reach for one and use it.

Another study suggested that couples counselling would be particularly important as new treatment options had the potential to decrease concerns about HIV transmission.

Tondoi noted that there was a need for HIV-prevention awareness among discordant couples, and for policies, services and research geared to their situation.

"These days it's a long time between an HIV-positive test and getting to the AIDS stage of infection," said Major Rubaramira Ruranga, an HIV-positive AIDS activist from Uganda. "We need options; we need research and education to get through life."

Share this

Ageing with HIV. 22/7/10

The world will face a mighty social and medical challenge as millions of people with HIV survive into old age

22 July 2010

The world will face a mighty social and medical challenge as millions of people with HIV survive into old age, the world Aids forum has heard.

The problem is only now becoming apparent as the first generation living with the human immunodeficiency syndrome (HIV) head towards their 60th birthday and beyond, thanks to the lifeline of antiretroviral drugs, say specialists.

These survivors are mainly in western nations, where the precious therapy first became available from 1996.

But they will soon be followed by millions of counterparts in sub-Saharan Africa and other poor countries where the drug rollout started in the middle of the last decade.

Testimony to antiretrovirals

That these men and women should have stayed the course is itself a stunning testimony to antiretrovirals - and, say some of the survivors themselves, something of a miracle.

"We lived from day to day," Jean-Luc Romero, 51, a councillor for the Paris region, told AFP, as he recalled the situation in 1987, when he learned of his HIV status.

"There was no point planning beyond that. We saw people dying all around us, and we would say, 'That will be us one day.' We didn't think about the future, because the present was all we had. I remember thinking, 'I won't live beyond 30'."

People died within a decade
AIDS first came to light in 1981. Before antiretroviral treatment developed, people usually progressed to the disease within a decade after infection by HIV, and died a year or two afterward.

For many of those now advancing into old age, living with HIV will be fraught with medical problems, loneliness and stigma and worries about finance, a seminar at the 18th International Aids conference heard on Wednesday.

"There have always been older people with HIV, but what is new is the numbers, that will require new public health thinking compared to the past," said Gottfried Hirnschall, director of HIV/Aids at the UN's World Health Organisation (WHO).

Social challenge

"We have to discuss this subject," he said. "Ageing with HIV is not just a clinical challenge, it is a clinical and a social challenge, and it's not just confined to one part of the world versus another."
Lisa Power, policy director with the British Aids charity the Terrence Higgins Trust, said that even though people with HIV were living longer, their quality of life was often darkly overshadowed by worry.

Her organisation carried out a questionnaire of 410 people with HIV aged more than 50 living in Britain, which was then followed up with 40 in-depth interviews.

The respondents were likelier to be unemployed than healthy counterparts and had meagre savings, often because they had expected to die before they got old and so had never put money to one side.

Many were socially isolated, fearful of the double discrimination against old age and Aids, and fretted about the day when they ultimately would be admitted to hospital or a nursing home.

Research presented by Margaret Hoffman-Terry of the American Academy of HIV Medicine provided statistic evidence of the scale of the problem.

In the United States alone, fewer than 20,000 people with HIV in 1995 were older than 50. In 2005, this figure was 120,000. In the 55-plus group, Americans with HIV were three times likelier than a healthy man aged 70 to have a chronic health problem, she said.


The complications of HIV - and the side-effects of powerful antiretrovirals that have to be taken each day for the rest of one's life - breed a long list of sicknesses.

They include depression, hypertension, diabetes, lipodistrophy (a redistribution of fat around the body), metabolic disorders, osteoporosis, heart, liver and kidney disease and cancer.

"In the future we are going to see patients living decades, and we are going to have to figure out ways of getting them to a healthy old age," said Hoffman-Terry. - (Richard Ingham/Sapa/AFP, July 2010)


Share this

Bristol-Myers Squibb National Survey Finds a Disparity Between Health Care Providers and HIV Positive Patients Perspectives on the Emotional Barriers to Seeking HIV Care and Treatment. 22/7/10

Data Addressing Barriers to Accessing HIV Testing, Care, and Treatment in the United States Presented at International AIDS Conference

22 July 2010

VIENNA, Austria--(BUSINESS WIRE)--Bristol-Myers Squibb Company (NYSE: BMY) today presented results from a national survey which found that emotional barriers, such as stigma, fear, denial and shame, and structural barriers, such as lack of knowledge, transportation, and insurance coverage, can prevent people living with HIV/AIDS (PLWHA) from seeking care and treatment. These data further the understanding of obstacles to care for many PLWHA and may help address the gap between a person testing HIV positive and seeking medical care and treatment in the United States. The national survey, commissioned by Bristol-Myers Squibb, was presented at the 18th International AIDS Conference in Vienna, Austria.

According to the national survey results, emotional barriers are the key barriers across all three patient groups surveyed from both the patient and the health care provider (HCP)/allied health care provider (AHP) perspective. Patients surveyed included those who were diagnosed with HIV and under care (DUC), diagnosed and not under care (DNUC), or undiagnosed and at risk for HIV (AR). These emotional and structural barriers are:

-Not feeling sick is a major barrier across all three patient groups
-Fear of medication side effects and the realization that taking medication means “facing reality” and possible financial struggle, are top tier barriers among the two diagnosed groups
-Stigma and denial are significant barriers among the undiagnosed

HCPs were found to underestimate the impact of emotional rather than structural barriers on a patient’s willingness to undergo HIV testing, access care, and even initiate HIV treatment when medically appropriate. Patients who were DUC were more likely to rate their doctor as influential in treatment decisions than patients in the other two groups surveyed. Understanding these barriers and how they differ across patient groups and HCPs throughout the country may provide key insights in helping to increase the number of people who receive the care they need.

“Despite the widespread availability of HIV therapies and expert care in the United States, many patients seek treatment long after HIV treatment experts would recommend initiating therapy. We hope that by understanding the perceived barriers to HIV care for both health care providers and patients, we can help address these treatment gaps,” said Daniel Seekins, MD, group director, HIV medical strategy, Bristol-Myers Squibb and one of the authors of the study. “This research underscores Bristol-Myers Squibb’s long standing commitment to the HIV/AIDS community and is part of our continued quest to ensure people living with HIV and AIDS receive optimal treatment.”

Recognizing the challenges that prevent people from accessing care, the National AIDS Fund (NAF) and Bristol-Myers Squibb entered into an unprecedented collaboration in 2009, combining financial resources and technical expertise to reach HIV-affected communities and to help facilitate changes to enhance access to care for PLWHA. This collaboration is one of the key components of Positive Charge, a Bristol-Myers Squibb initiative launched in December 2009 to help break down the barriers that prevent PLWHA from receiving HIV care, appropriate treatment and necessary support.

Positive Charge aligns with President Obama’s National HIV/AIDS Strategy (NHAS) announced July 13, 2010. Developed with insights and input from the HIV community, the NHAS focuses on three main goals – lowering the rate of HIV infections, increasing the number of people in care, and reducing disparities in care. In May 2010, Bristol-Myers Squibb and NAF joined Melody Barnes, Director of Domestic Policy Council, for a panel discussion at the White House, during which Positive Charge was discussed as an example of the public-private partnerships necessary for the successful implementation of the NHAS. At that time, NAF announced the awarding of five major grants to organizations in areas of high HIV prevalence that will enable more than 35 community-based organizations to help improve access to care for PLWHA. These grants provide an opportunity for geographically and culturally diverse organizations within a region to combine their expertise in developing community-driven solutions to help enable greater access to HIV/AIDS care and treatment.

About the National Survey

The findings are the result of a national survey of patients and health care providers (HCPs). Bristol-Myers Squibb commissioned a quantitative national survey of patients and health care providers, including patients who were diagnosed with HIV and under care (DUC), diagnosed and not under care (DNUC), or undiagnosed and at risk for HIV (AR), and health care providers including physicians, nurse practitioners/physician assistants (NPs/PAs) and allied health care providers (AHPs) such as case managers, peer educators/counselors or mental health professionals/social workers.

Two parallel surveys were conducted among 234 patients [104 DUC; 54 DNUC, 76 at-risk (AR)] and 299 HCPs and allied health professionals (90 MDs, 40 NPs, 33 PAs, 136 AHPs) during November 2008 through January 2009. Interviews were conducted over the phone, online or in person and lasted approximately 30-45 minutes.

According to the national survey data presented, HCPs were more likely to view substance abuse issues (49% for patients DUC and 66% for patients DNUC) or struggling to handle financial and basic needs (58% for patients DUC and 64% for patients DNUC) as reasons why people living with HIV were not receiving treatment. On the other hand, patients DUC indicated that fear of side effects (82%), denial of needing treatment because they did not feel sick (69%), and HIV stigma (55%) as key barriers. Findings were similar for patients who were diagnosed but not under care.

About Positive Charge

Positive Charge is a comprehensive U.S.-based initiative sponsored by Bristol-Myers Squibb and built on three key pillars: enabling PLWHA to access care and treatment, contributing to the scientific agenda, and demonstrating advocacy leadership.

Positive Charge is designed to support programs customized to help meet the unique needs of individuals living with HIV, and is dedicated to working with health care providers, community members, advocates, caregivers and families of PLWHA in order to help assist them in overcoming the barriers that may be preventing them from getting the HIV care, treatment and support they need.

Positive Charge is also designed to make meaningful contributions to scientific exchange on issues of importance to HIV patients and physicians and to advocacy dialogues at the state and local levels to the benefit of PLWHA.

To learn more about Positive Charge, please visit HERE

Share this

Football Therapy for Zim HIV Patients. 12/7/10

"Playing football helps me a lot, it relieves stress and we share our problems as a team."

12 July 2010

Harare - Taking a breather after a heavy training session, Elizabeth Maseswa recalls how she was kicked out of her Harare home for revealing her HIV status before finding a new family on the football field.

"Five years ago, my own mother disowned me and ordered me out of the house. I had no one to turn to before I joined the team," said 26-year-old Maseswa, the skipper of the table-topping ARV Swallows.

"Playing football helps me a lot, it relieves stress and we share our problems as a team."

The ARV (antiretroviral drugs) Swallows are one of 16 teams all made up HIV-positive women formed by veteran football administrator Chris Sambo.

Other teams include Stigma Eradicated and Virus Ambassadors, whose players have forged a family-like bond which should be the envy of some of the teams who have exited the World Cup in neighbouring South Africa.

Pointing fingers

In a country which is not only in the eye of the Aids pandemic's storm but also suffered severe food shortages during a prolonged economic crisis, such solidarity and companionship is vital.

"Sometimes I have lacked even basics like salt, but once I tell my teammates they help me out and also get me things I haven't even mentioned," said Maseswa. "We share each other's burdens."

Apart from the camaraderie, players say the football had made them fitter.

"I now feel like (former Zimbabwe footballer) Peter Ndlovu," said Maseswa's 29-year-old teammate Deliwe Murwira.

"My sister-in-law used to sing about my HIV status saying all sorts of insults, but all that has changed when I started playing football.

"Some people did not want to share a bottle of water with me, I could not walk here without fingers being pointed at me, but this has changed because I am footballer."

Makeshift stadium

Sambo, a former fixtures secretary for Zimbabwe's Professional Soccer League, said he came up with the idea of forming a league for HIV-positive women to cash in on football's appeal.

"Realising that football is a sport which attracts a very large following and for the purposes of demystifying HIV/Aids, I decided to form a league of HIV/Aids positive ladies," he told AFP.

"During matches, literature on HIV/Aids is distributed and we have a mobile testing centre. We have also identified other 46 teams and we plan to have this project nationwide."

Sambo has sponsored the league to the tune of $10 000 but said the money was not enough to cover running costs and travel expenses.

The teams play in a makeshift stadium in the Harare suburb of Epworth which has two rocks sticking out in the middle of the pitch.

At the training session, play was stopped at one stage when a piece of wire punctured the only ball, forcing coach Jonas Kapakasi to cycle to a nearby shopping mall for repairs.

"This is what we go through sometimes," he said. "But the ladies are so united. Even if one the players is not feeling well, she turns up to training because other team members give her emotional support."

Fending for themselves

The players get ARVs from Medecins San Frontiers, while a local bank and petrol company have also chipped in with kits.

While football acts as therapy to relieve stress, team members still have to fend for themselves and their families, with some poaching firewood from a neighbouring farm to sell.

The oldest member of the team is Mary Chinyama, 48, whose husband died in 2002.

"I now get along very well with other members of my family because of football," she said while cradling another teammate's child.

Zimbabwe's ministry of health and child welfare says the HIV prevalence rate in the 15 to 49 age group declined to 13.7% in 2009 from 33% 10 years earlier.

The government is struggling to provide ARVs to those who cannot afford with less than half of those in need currently accessing the drugs.

Share this

HIV and 'Swine Flu' (H1N1 Virus)

Because HIV affects the immune system, there were many concerns about the effect on and vulnerability of people living with HIV in the H1N1 epidemic

Share this

Those with HIV May Have Higher Risk for Complications Related to H1N1. 23/10/09

October 23, 2009 by dshesgreen
As the government rolls out its response to H1N1, this news about the interaction between so-called “swine flu” and HIV should be of interest: “The prevalence of certain underlying conditions, including immunosuppressing conditions, has been higher than in the general population suggesting HIV-infected adults and adolescents also might be at higher risk for complications related to infection with 2009 influenza H1N1.”
That comes from a Health and Human Services bulletin, with links to the CDC’s latest guidance on treating H1N1 in HIV-positive adults and children. Read about that and more HIV treatment and prevention news by clicking here.
Share this

The Latest on H1N1 (Swine Flu) and HIV. 21/10/09

By Myles Helfand
October 21, 2009
If you feel like swine flu (or H1N1, as we're supposed to be calling it) never actually left us here in the U.S., you wouldn't be far off. Flu season in the U.S. normally runs from late November through the end of March. However, thanks almost entirely to H1N1, the 2008-2009 flu season ran into the beginning of the summer, and the 2009-2010 season has already begun.
So where do we stand on H1N1 right now? And what have we learned in the past few months that's especially important for people with HIV, or those who are close to (or care for) people with HIV?
As fortune would have it, the White House Office of Public Engagement arranged a series of conference calls for health care professionals a couple of weeks ago, each one focusing on a different "risk group": there was one for people with diabetes, one for people with heart problems, and yes, one for people with HIV.
Here are some of the key points that came out of the call on H1N1 and HIV, which took place on Oct. 9. It featured talks and a question-and-answer period with two doctors: Tom Shimabukuro, M.D., a vaccine expert with the U.S. Centers for Disease Control and Prevention (CDC); and John Brooks, M.D., who works on the CDC's HIV prevention team.
  • If you have HIV or provide care for someone who does, do not get the nasal-spray version of a flu vaccine. Wait for the injection. Each year, there are usually two versions of a flu vaccine: the "live attenuated" version, which is a nasal spray containing live bits of actual flu virus, and the "inactive" version, which is injected using a syringe and contains only dead bits of the flu virus. The inactive version is the one you want if you have HIV or even if you are providing care for someone with HIV, since the live version may carry some risk of actually infecting you with the virus it's supposed to prevent.
    As I write this, the H1N1 vaccine is still just beginning to make its way to health care centers throughout the U.S., and most of the H1N1 vaccine being delivered is in nasal spray form, according to Dr. Shimabukuro. As October turns to November, more and more of the inactive, injected version of the vaccine will become available -- and that'll be the time to get your vaccination. Check out flu.gov and click on the "Flu Shot Locator" link to see whether any clinics, doctors offices or the like are offering the shot near you.
  • In the U.S. right now, virtually all the flu that has occurred H1N1 flu. During the week of Sept. 27 to Oct. 3, for instance, H1N1 was found in 99 percent of all those who tested positive for the flu and who had their flu virus analyzed to determine what type of virus it was.
  • The symptoms of H1N1 are no different than they are for the regular seasonal flu. They include any of these (usually several at once): fever, chills, sore throat, stuffed up or runny nose, coughing, aching, tiredness, and possibly even vomiting or diarrhea. Basically, you feel like crap. In a normal year, more than 200,000 people in the U.S. go to a hospital because of the flu, and this season we've got an extra type of flu on top of the regular seasonal one.

    This wasn't mentioned during the conference call, but it's worth noting a couple of key ways in which the flu -- be it the seasonal variety or H1N1 -- is different from a cold. They're both caused by viruses, and the symptoms generally are quite similar, but flu symptoms are generally more severe and last longer (often more than week, whereas a cold is usually wrapping up when it reaches a week old). You're also much less likely to have a fever if all you have is a cold.

  • You get H1N1 the same way you get the regular seasonal flu. It usually happens when someone who has the flu coughs or sneezes near you, and you breathe the virus in. It can also happen when you touch a surface that has live flu viruses on it, and then put that finger into your eyes, nose or mouth.
  • To be on the safe side, everyone with HIV should get both a H1N1 and regular seasonal flu vaccine, regardless of CD4 count or viral load. The flu vaccine situation is a lot simpler if you have HIV, because you're automatically on the priority list for both the H1N1 vaccine and the regular seasonal flu vaccine. Everyone with HIV is considered at greater risk for H1N1 regardless of age. So even if your CD4 count is robust -- say, over 1,000 -- the recommendation is still to get the shot. "There's just not enough data for us to make a recommendation based on CD4 cell count, so we make it for all persons with HIV," explained Dr. Brooks. "We want to be conservative and do the right thing."
    The order of the H1N1 and seasonal flu shots doesn't matter. You can get one weeks before the other, or get them both at the same time. However, if you decide to get your seasonal flu vaccine now, you'll have to go back and get the H1N1 vaccine when it's available as an injection, since it's only available as a nasal spray now.
  • The H1N1 shot is just as safe as the seasonal flu shot. Even though H1N1 is a new strain of flu, no corners were cut in creating the vaccine for it in time for this flu season, Dr. Shimabukuro said. Five different companies are making H1N1 vaccine for the U.S. this year, and all of them are approved and licensed.

    "The licensing process is similar to the way flu vaccines are made every year," Dr. Shimabukuro said. "There's a long history of use of influenza vaccine and it has an excellent safety profile. We do not anticipate that there would be any more adverse events from the H1N1 vaccine than from the regular seasonal vaccine." Those "adverse events" are usually pretty mild, involving just some soreness around where the shot was given. Sometimes the shot can cause some mild flu-like symptoms for a day or two.

  • The great flu paradox: It is not more common in HIVers, but it can be more severe. Research on the flu -- including H1N1 flu -- shows that people who get severely ill from the flu tend to have one or more "underlying health conditions," a general term used to describe any of a number of diseases or states of being. A full listing is available online, but the bottom line is that they include having a "weakened immune system" -- a state that all HIVers are lumped into, even if they have a CD4 count over 500.
  • Protect yourself from pneumococcal pneumonia: Make sure your Pneumovax shots are up to date. You can get a booster shot every five years, and Dr. Brooks of the CDC highly recommends them, since pneumonia and the flu can make one another worse. "Not only are persons with HIV more susceptible to this infection that can cause pneumonia, but this is a form of bacterial pneumonia that also commonly complicates the course of influenza, and persons who have suffered influenza are predisposed to getting pneumococcal disease," he explained on the conference call. People with HIV are at a higher risk for developing pneumococcal pneumonia, especially if they have a CD4 count under 200.
If you want to stay up on the very latest developments regarding H1N1, visit TheBody.com's H1N1 page. The government has its own resources, of course: A Web site conveniently named flu.gov (where you can sign up to receive e-mail notifications whenever part of the site changes) or a health hotline at 1.800.CDC.INFO (that's 1.800.232.4636).
Share this

Obesity And Diabetes Main Underlying Health Conditions In People Dying Of Swine Flu: No Evidence That HIV Increases Mortality Risk. 20/08/09


Michael Carter,

Thursday, August 20, 2009

Obesity and diabetes are the principal underlying conditions associated with death in patients with swine flu, a report published in the August 20th edition of Eurosurveillance shows. There is no indication in the report that HIV increases the risk of death from swine flu.

The authors from the French Institute of Public Health analysed all deaths caused by swine flu before 16th July.

A total of 564 deaths around the world were identified and detailed information was available for 213 of these.

Obesity and diabetes were the underlying health conditions most associated with death (57 cases). Respiratory disease was present in 37 patients, heart disease in 36, and unspecified other infectious diseases in 19.

Immunodepression was recorded in 16 patients, including five cases of cancer, two of transplantation, and three of auto-immune disease. HIV was not mentioned by the authors as being a specific risk factor for an increased risk of death.

The analysis also showed that the overall mortality rate in patients infected with swine flu is low.

Individuals with HIV are not thought to be at increased risk of contracting swine flu. Nor are HIV-positive individuals thought to have a greater risk of developing swine flu-related complications, unless they have a CD4 cell count below 200 cells/mm3. Patients with weak immune systems should always seek medical advice from their HIV clinic if flu symptoms persist or worsen despite antiviral treatment for flu, not least because symptoms of an opportunistic infection may be mistaken for flu.

Last week, the government announced its swine flu vaccination plans. It is expected that a vaccine will become available in the early autumn. Individuals with HIV will be one of the priority groups to receive the vaccination.


Valliant L et al. Epidemiology of fatal cases associated with pandemic H1N1 influenza 2009. Eurosurveillance 14: 33, August 20th, 2009.

Share this

Study: No Evidence That HIV Worsens Swine Flu Mortality Risk, Complications. 21/08/09

August 21, 2009

Obesity and diabetes are the two main underlying conditions associated with death in people with H1N1 virus (swine flu), according to a new study published in the August 20 edition of Eurosurveillance as reported by aidsmap.com. The authors, from the French Institute of Public Health, do not cite HIV as a mortality risk factor.

Furthermore, HIV-positive people are not thought to be at increased risk for contracting H1N1, nor are they thought to be at greater risk for developing swine flu complications unless their CD4 count drops below 200.

The study—which examined H1N1-associated deaths before July 16—also found respiratory disease and heart disease to be underlying risk factors. Immunosuppression was reported in 16 patients, including five cancer cases, two transplantation patients and three people with autoimmune disease.

Of the 564 H1N1-related deaths identified, detailed information was available for only 213.

Share this

HIV and Inflammation. 4/8/10

Inflammation is an early response to infection or injury.

4 August 2010
-What Is Inflammation?
-Acute and Chronic Inflammation
-HIV Causes Inflammation
-Leaky Gut Syndrome
-Measuring Inflammation
-Treating HIV Inflammation
-The Bottom Line

What Is Inflammation?

Inflammation is an early response to infection or injury. It is a "non-specific" immune response. It does not vary depending on the type of injury or infection.

Most of the body's healing tools circulate in the blood. These include antibodies, T-cells and other white blood cells, clotting factors, chemicals that may kill germs, and nutrients to feed damaged cells.

Injured cells release chemicals that communicate with the immune system. They attract healing cells and chemicals. Inflammation helps these healing factors leave the bloodstream and work on damaged tissue. Blood vessels enlarge, increasing blood flow to the damaged area. Inflammation changes the structure of blood vessels, making it easier for plasma to pass into the surrounding tissues. This causes swelling. Inflammation also causes redness, heat, and pain. In addition, it reduces tissue function.

Coagulation (the formation of blood clots) is part of inflammation. This can occur in the skin (for example, stopping bleeding from a cut) or inside the body (for example, building a barrier around germs or protecting a damaged area in the lining of a blood vessel.)

Coagulation has to stay in balance with the breakdown and removal of clots. This process is called fibrinolysis. Fibrin is the protein that forms clots. Lysis means reduction or destruction.

Acute and Chronic Inflammation

Acute inflammation normally occurs in response to physical injury such as a cut or sprain, or a localized infection. Acute inflammation ends when specific chemicals circulate to "turn off" the inflammation.

However, inflammation can also be chronic. Chronic inflammation causes tissue damage and scarring. The blood vessels stay permeable. White blood cells continue to leave the blood and accumulate in the tissue. Immune cells can "wear out" and stop working correctly. Chronic inflammation eventually destroys surrounding tissue and creates scar tissue. It can also contribute to allergies, asthma or "autoimmune" diseases like arthritis and multiple sclerosis. In autoimmune diseases, the body sometimes makes antibodies that attack healthy cells.

Ongoing inflammation is associated with many chronic diseases. These include heart failure, kidney problems, metabolic syndrome, diabetes, dementia, and frailty.

HIV Causes Inflammation

HIV is a chronic infection. Even patients with an undetectable viral load make new virus. This may contribute to continuing inflammation. Antiretroviral medications reduce inflammation, but not to normal levels.

Over time, HIV weakens the immune system. Old infections may come back. Almost everyone with HIV is also infected with cytomegalovirus (CMV, see Fact Sheet 504.) Latent CMV infection can become active in people with HIV, causing additional Inflammation.

Other infections or illnesses (co-morbidities) are important in understanding the health of people with HIV. Hepatitis or herpes infections (see Fact Sheet 507) are also common.

Leaky Gut Syndrome

The mouth and digestive tract, like the skin, protect the body from "outside" threats. At the "top" end of the digestive tract is the mouth. Poor dental health can lead to general infection and inflammation (see Fact Sheet 653.)

The gut normally contains about 70% of the body's immune cells. The intestines have a surface area approximately equal to the size of a football field! The immune system in the gut is called gut-associated lymphoid tissue or GALT. It protects the body from germs in food. HIV damages GALT very early in infection.

Inflammation in the gut makes it easier for germs to pass out of the intestine and "leak" into the body's circulation. This leaky gut contributes to overall (systemic) inflammation. Inflammation in the gut also contributes to poor absorption of nutrients.

Lipopolysaccharides (LPS) are molecules that are part of the coating of some bacteria normally found in the intestines. LPS produces a strong immune response. High levels in the blood are a sign of "leaky gut" syndrome.

Measuring Inflammation

Inflammation in people with HIV shows up in high levels of some elements in the blood:

-Interleukin-6 is involved both in increasing and decreasing inflammation. It increases rapidly after exercise.
-C-reactive protein is thought to bind to damaged cells, attracting substances that will remove them. It is a measure of general inflammation. It rises quickly and dramatically during infections.
-D-dimer is produced when blood clots break down. It is a measure of general inflammation. It is also used to diagnose blood clots, especially clots in deep veins or in the lungs
-Cystatin C is mainly used as an indicator of kidney health. However, high cystatin C levels have been linked to heart disease, nerve problems and higher death rates.

Treating HIV Inflammation

Researchers are looking into anti-inflammatory drugs that have been used in other diseases such as rheumatoid arthritis, and trying to learn from other studies of immune activation, inflammation, and aging.

Another area of research in HIV involves the bacterial environment of the gut. These bacteria can affect the outcomes of many diseases. Interventions that affect these bacteria may be helpful. This includes "probiotics" such as acidophilus and other live cultures that stimulate the growth of helpful bacteria in the gut.

The Bottom Line

Inflammation is a complex process. Acute inflammation is a normal part of the body's healing process. Chronic inflammation can damage the body and is associated with many chronic health problems, and with normal aging.

HIV is an inflammatory disease and causes chronic inflammation. This can accelerate physical changes normally associated with aging.

Various possible treatments for chronic inflammation are being studied.

Share this

Hope in Fight against HIV/Aids. 1/12/2008

News 24

Cape Town - In a sign of hope on a continent ravaged by Aids, a fertility clinic has started a service allowing couples infected with the virus to have a healthy baby.

The Cape Fertility Clinic is the first in Africa to open a laboratory for HIV-positive patients, enabling them to conceive and give birth to HIV-negative babies by using procedures such as in-vitro fertilisation. "HIV is no longer seen as a death sentence but a chronic disease," says Klaus Wiswedel, one of the clinic's directors. "And people with chronic diseases are entitled to have fertility treatment. We can safely deliver an HIV negative child and, with the right treatment, the parent can live a long life." About five or six couples, with either one or both partners carrying the Aids virus, visit the clinic every month. It is only for the favoured few with enough money to pay for fertility treatment and is a drop in the ocean compared to the huge numbers of infected people. But it is a small symbol that, after years of despair, Africa is making progress in protecting unborn child from Aids - and in prolonging the life of the parents. Life-saving ARV medicines About two million people are receiving lifesaving antiretroviral medicines in Africa, which bears the brunt of the Aids epidemic, up from 100 000 in 2003.

This has been accompanied by a dramatic increase in the number of pregnant women receiving drugs to stop them from passing the HIV virus to their children. According to a UN report on "Children and Aids" published for World Aids Day, the number of pregnant women getting therapy in low and middle income countries has tripled in the past three years. For some countries the gains have been even more striking, thanks to an increase in donor interest and funding. In dirt-poor Malawi and Lesotho, less than five percent of pregnant women infected with the Aids virus got drugs to protect their unborn babies in 2003. This increased to 32% in 2007, according to the report, which was prepared by Unicef, the World Health Organisation, UNAids and the UN Population Fund. In Mozambique the proportion of pregnant women on therapy increased from three percent to 46%; in Uganda from nine percent to 34%; in Swaziland from five percent to 67%; in Zambia 18% to 47% and in South Africa from 15% to 67%, the report says.

Even stricken Zimbabwe, where the health service has collapsed, managed an increase from eight percent to 29%. In Botswana, which has one of the highest Aids rates in the world but has enough resources and commitment to provide treatment, 95% of HIV positive pregnant women were given antiretroviral drugs to protect their children in 2007. 'A human right' "The prevention of mother-to-child transmission of HIV is not only effective, but also a human right," said UNAids Executive Director Dr Peter Piot, "We are seeing good progress in many countries, especially in parts of Africa, but we need to significantly scale up HIV testing and treatment for pregnant women." The standard advice given to men and women who are infected with the Aids virus is to avoid unprotected sexual intercourse. But the Cape fertility clinic's Wiswedel says this should not deny stable couples the right to have a child. If the woman is HIV-positive but her partner is free of the virus, the procedure is artificial insemination, Wiswedel says. If the man is HIV positive, then the sperm has to be cleansed of the virus, he says. The clinic has a separate HIV laboratory to make sure there is no risk of passing infection to its other clients. Once pregnant, an HIV positive woman has to be followed by an HIV specialist and has to have a Caesarean delivery to reduce the risk of transmission to the infant. Some clinics in the United States and Europe have offered such treatment for years. But in Africa, the Cape Town laboratory is a first. Wiswedel says couples have come to him from all over the continent and he expects their numbers to increase.

"We jumped into the deep end of the pool because more and more patients want to receive treatment," he says. We saw a huge need for this."

Share this

I Am HIV Positive and I Don’t Blame Anybody—Including Myself. 12/11/10

My sexual health is mine to control, not his.


By Kirk Grisham
12 November 2010

I am HIV positive, and I don’t blame anybody for it—not myself or anybody else.

He didn’t rape me and he did not trick me. It was through our unprotected sex that I became HIV positive. Since seroconverting, I have been very conscious of the language I use to discuss transmission, particularly my own. To say “he gave me HIV” obscures the truth, it was through a mutual act, consensual sex, that I became HIV positive. When speaking to him a couple months after my diagnosis I gathered that he knew he was positive when we had sex. But that is beside the point; my sexual health is mine to control, not his.

We are encouraged to think about prevention and transmission in terms of responsibility. Someone must be at fault. Culturally, we hunt for secret villains. Today’s “down low” black man is but the latest boogeyman at which we’ve pointed our fingers—the latest of the so-often racialized monsters at which we can direct HIV blame rather than have honest conversations about sex and relationships. 

In recent weeks, another recurring villain has re-emerged: the HIV-positive criminal who callously infects others. Last month, long-standing accusations that baseball legend Roberto Alomar hid an alleged HIV infection from his wife and girlfriends returned to the news. This summer, German pop star Nadja Benaissa made international headlines as she was tried for failing to disclose her HIV status to sex partners. These stories rarely fail to steal the news spotlight, and often throw local communities into HIV panics.

There must be a reason they are so resonant, right? They are evidence that HIV transmission from knowingly positive persons is rampant, right? Wrong. The reality is that the vast majority of HIV infections occur between two consenting people who believe they are doing nothing more risky than making love—or, at least getting laid. 

People who know their HIV status are actually more likely to use condoms than not. The Centers for Disease Control and Prevention reports one snapshot study that found 95 percent of those living with HIV infection in 2006 did not transmit the virus to others that year. Another CDC study, released in September, found that while one in five “men who have sex with men”—public health jargon for gay and bisexual men—in 21 major cities has HIV, nearly half of those men (44 percent) don’t know it. The agency estimates that the majority of new infections each year result from sexual contact in which the positive person does not know he or she has HIV. 

HIV disproportionately affects African Americans, regardless of sexuality. They account for half of the people living with HIV/AIDS, but just 13 percent of the overall U.S. population. Studies also suggest African Americans are least likely to know their HIV status, with the younger being less aware. Similar patterns exist among men who have sex with men, of all races. No talking and no testing, just finger pointing.

The communication problems that help drive these trends don’t stop with finding monsters to blame. People I love and talk to about my status do not always have the language or tools to express their grief and worry. They ask things like, “How could you be so irresponsible?” Or, “How could you fuck up like this?”

This language hurts, but more importantly it shifts the discussion from meaningful conversation about risk and vulnerability to simplistic directives: if only people used condoms, transmission would cease. But this idea relies on a complicated array of misconceptions and idealistic assumptions of equality, equal access to information, and how to use that information to stay HIV negative.

It is irresponsible to just tell people to use condoms without acknowledging that conditions like poverty, patriarchy and homophobia play roles in the so-called risks we all take. Even with people who have seemingly escaped these broader contexts—say, a working-middle class white man such as myself—stigma can prevail. Stigma that is produced by homophobia and general ignorance, yes, but also by American society’s desperate need to discipline and punish, to affix blame on individuals rather than confront the systems in which individuals live. So the AIDS epidemic becomes a challenge of personal responsibility rather than a damning indictment of global public health. That personal responsibility, however, is tricky: I bore no responsibility for the epidemic, until I had HIV, when it became entirely my problem. 

When I used to get tested at the city clinic, they would tell me that people stay negative by disclosing their negative status. Having a conversation is paramount—negotiating whether and how you want to use protection, talking about the last time you were tested and asking the same of your partner. This dialogue cannot be taken for granted, but for many, before these conversations can happen, we need the tools to do so. So here, we lead by example. Three people of varying HIV status offer their own testimonies on how they think about their sexual health, and what it means.

Benee Williams

Age: 28; HIV negative

I can’t always say that I have cared much for my sexual health. I listened to the teachers speak about individual health but none of it seemed to do its purpose. I’m not so sure if I understood the power of owning my sexuality or knowing how to protect my physical and mental health. As I got older, I really started to look outside of what I deemed “me in between the sheets.” I started to think about my sexual health as more than just physical. I declared I own this body; I must respect it. When I do or do not have sex it is my decision, and I must be active in that decision, not passive. I appreciate sex. Through this process I have learned that communication about health awareness with my partners has improved over the years as well. Sex is one of the most natural things we can do as humans.

Catherine Mercedes Brillantes Judge

Age: 24; HIV negative

As a survivor of domestic violence and the many forms of abuse that it carries, I know being in control of your sexual health is critical for feeling empowered and safe. It took me years until I finally felt that I was in control of my sexual health and decisions. When I made the choice to be celibate (for a specific time period), it was the first time I felt in control of my body. It was liberating for me since I was often forced into sex throughout my adolescence. After not having the ability to say “no” for such a long time, I know the importance of making that decision. There are structural reasons why women feel that they are not able to say no, and we need to work to change that. As a young feminist of color, I believe it takes much more than reproductive health care and education for us to feel in control of our sexuality—it takes personal empowerment too. That to love and respect yourself means not only resisting coercion, but being comfortable enough to say yes when you want to have sex too.


Age: 31; HIV Positive 

My relationship to HIV has been woefully simple and dramatically complex (with emphasis on the drama). When I tested positive, I knew it was not a death sentence. It was post 1996. I’d worked in prevention. I knew I was going to live. The problem became living and remaining a sexual being. As a youth organizer, I had been taught to integrate positive sexuality into youth work. I was taught, and believe, that sex is a natural part of our human experience and that we should teach and support each other in our explorations of sex and the ways in can enhance or relationships, friendships, and lives.With HIV I almost lost that…others tried to take it away from me. Now I talk about it raw and uncut. I talk about the challenges but also reclaim space in the sexual community and use my own experiences, the good, the bad, and the multi-orgasmic to demand permanent space for all those living with HIV. To all the poz people in the world, I say, with love: **** on.

Share this

Kidney Transplant 'Feasible' for Patients with HIV. 19/11/10

Three years after transplant 88% of patients were still alive,


By Michael Carter
19 November 2010

Kidney transplant is a feasible option for HIV-positive patients with end-stage renal disease, US investigators report in the November 18th edition of the New England Journal of Medicine.

Three years after transplant 88% of patients were still alive, and the transplanted kidney was still functioning in 78% of individuals. Overall, transplant did not complicate HIV disease management.

“Kidney transplantation is highly feasible in HIV-infected recipients,” comment the investigators.

End-stage renal disease is an important cause of illness in HIV-positive patients. Thanks to the success of antiretroviral therapy many HIV-positive patients with severe renal disease are considered good candidates for transplant.

Investigators wanted to see how safe and effective kidney transplant was in patients with HIV. They therefore conducted a multicentre, prospective study involving 150 patients who received a new kidney at 19 transplant centres across the US. The patients were followed for up to three years.

To be eligible for transplant, patients were required to have a CD4 cell count of at least 200 cells/mm3, and an undetectable viral load while taking antiretroviral therapy. Patients who were co-infected with hepatitis B or hepatitis C were only eligible for transplant if they showed no sign of cirrhosis.

The patients had a median age of 46, most (78%) were men, and 69% were black. Median CD4 cell count at the time of transplant was 524 cells/mm3. A total of 19% of patients were co-infected with hepatitis C and 3% were co-infected with hepatitis B.

Enrolment occurred between 2003 and 2009. The median duration of follow-up was 1.7 years, but 53 patients contributed three or more years of follow-up.


Survival rates were good. One year after transplant 95% of patients were alive and the graft had survived in 90%. After three years, 90% of individuals were still alive, and the transplanted kidney was still functioning in 74%.

These survival rates were slightly poorer than those seen in HIV-negative kidney transplant recipients, but were better than the rates observed in older transplant patients.

A total of eleven patients died. Three of the deaths were attributed to cardiac causes, two to sepsis, two to lung infections, two to cancer in the non-transplanted kidney, and two to unknown causes. The new kidney was still functioning in eight patients at the time of their death.

In addition, 13 patients lost their transplanted kidney. For five patients the cause was long-term rejection or chronic graft nephropathy, vascular thrombosis (three patients), acute rejection (three patients), technical reasons (one patient), and non-adherence to treatment (one patient).

Patients who received a kidney from a living donor were significantly less likely to lose their kidney than those whose donor was deceased (p = 0.02).

Antibody induction therapy with antithymocyte globulin was associated with an increased risk of graft rejection (p = 0.03).


A total of 49 patients experienced acute organ rejection. The incidence of rejection after one year was 31%, increasing to 41% after three years. Rejection responded to glucocorticoid therapy in 48% of patients.

Factors associated with an increased risk of rejection were receipt of a kidney from a deceased donor (p = 0.03), and use of the immunosuppressive drug cyclosporine (p = 0.02).


Patients whose donor was dead were more likely than those with a living donor to require dialysis during the first week after transplant (46% vs. 15%).

Episodes of organ rejection were associated with poorer kidney function after one and three years of follow-up (p = 0.05 and p = 0.01 respectively).

HIV disease progression

One year after transplant, patients who received antithymocyte globulin had significantly greater falls in their CD4 cell counts than individuals who did not receive this drug (-238 vs. -135 cells/mm3, p < 0.001). A difference was still apparent after three years (-57 vs. -52 cells/mm3, p = 0.05).

Viral load became detectable in 48 (32%) of patients at least once. Most of these increases in viral load were transient and one patient had a detectable viral load three years after transplant.

There were seven new AIDS-diagnoses.

Of the 150 transplant recipients, 57 had a total of 140 infections that required hospitalisation. Two-thirds of these were due to bacterial infections.

Patients co-infected with hepatitis C had a significantly higher rate of serious infecitons (p = 0.02). Infection rates were also significantly higher among patients treated with antithymocyte globulin (p = 0.002).

“The rates of patient survival and graft survival at 3 years were generally between the reported rates in the national database for older kidney-transplant recipients and for all kidney-transplant recipients,” comment the investigators.

They believe that these “favourable results were influenced by careful patient selection, adherence to clinical management protocols…and close coordination among the multidisciplinary teams.”

However, the investigators highlighted the difficulty of achieving “therapeutic and non-toxic levels of immunosuppressive drugs,” and they believe that this contributed to high rejection rates. The authors therefore caution: “antithymocyte globulin induction therapy should be restricted to patients at very high immunologic risk for rejection.”

Share this

Life Insurance For HIV-Positive People, At A Price . 22/10/09


JOHANNESBURG, 22 October 2009 (PlusNews) - The availability of antiretroviral (ARV) treatment and legislation prohibiting discrimination have helped turn HIV/AIDS into just another chronic disease, but an HIV-positive status can still be an obstacle to getting a loan or buying insurance.

Most life insurance companies in southern Africa still require applicants to take an HIV test and deny cover to those who test positive. Without life insurance as security, financial institutions are reluctant to lend money to buy a house or start a business.

"The denial of life cover inflicts on other rights," said Amon Ngavetene, coordinator of the AIDS Unit at the Legal Assistance Centre (LAC), a non-profit legal advice organization in Namibia.

The LAC has called on the Namibian government to pass legislation prohibiting insurers from discriminating against people living with HIV, but so far to no effect.

Ngavetene noted that HIV-positive individuals were discriminated against even after their deaths. Those who contract HIV after taking out life cover and fail to notify the insurance company run the risk of having their policies invalidated if their death certificate shows they died of an AIDS-related illness.

"A person could be paying for 15 years, and then when they die their family can't get a penny," Ngavetene told IRIN/PlusNews. "It's unconstitutional but very difficult to challenge because it becomes an issue of the terms of the contract."

Insurance companies in Botswana also require applicants to take HIV tests, but Linny Keorapetse, an assistant legal officer at the Botswana Network on Ethics, Law and HIV/AIDS (BONELA), said at least one company, Metropolitan Life, would cover HIV-positive people, although at a much higher cost.

Those who test negative are required to re-test every five years, but a positive result at a later stage means the policy is automatically converted from life insurance into pure savings.

Botswana's constitution does not provide for socio-economic rights that could form the basis for a court case, said Keorapetse. "The only thing we can do is to make noise about it; we can say it's discriminatory because it's the only medical test [insurance companies] ask for, yet there are riskier conditions."

Botswana has the second highest HIV prevalence rate in the world, with nearly one in four adults living with the virus, but it also has one of the most extensive ARV programmes in the region, with free treatment reaching about 90 percent of people who need it. "Nowadays, people living with HIV who take treatment can live another 20 years," Keorapetse pointed out.

A different approach

Instead of discriminating against people living with HIV, Ross Beerman, managing director and co-founder of AllLife, a South African company, decided to take advantage of this gap in the market to specialize in providing HIV-positive people with life cover.

"We have a very different operating model," he told IRIN/PlusNews. "In a standard model, you price policies based on historical behaviour ... we price on forward-looking behaviour: if you're HIV positive, we don't really care how you behaved in the past, we care about you staying healthy in the future."

Policyholders must commit to going for regular blood tests and starting ARV treatment when their CD4 count [a measure of immune system strength] drops below 200. Once on ARVs, AllLife closely monitors a client's adherence via links with healthcare providers, and regular cellphone text message reminders and warnings if appointments are missed.

Premiums are between two and five times higher than normal life insurance policies (an average monthly payment of about US$40 buys $40,000 worth of life cover), but can be used to secure home loans and start businesses.

In addition, being a policyholder appears to have a positive health effect. "Just by virtue of being our clients they're going for regular monitoring," said Beerman. "They actually get approximately 15 percent healthier after six months; the realization they can have an impact on their longevity means they start behaving in more healthy ways."

In contrast, HIV-positive people in Botswana are steered towards funeral policies or advised to join burial societies. "Currently, there's no company that offers life insurance specifically for people living with HIV," said Keorapetse.

AllLife relies on fairly sophisticated administrative and IT systems to function efficiently, which would be difficult to replicate in less developed countries in the region where, for example, blood test results are not captured electronically.

Nevertheless, Beerman said, people living with HIV have the right to participate in the mainstream economy "in a normal way".



Share this

Loving a Man with HIV. 23/8/10

"Please don't leave me. I've tested positive.”


By Pieter van Zyl
23 August

On his 35th birthday Wynand Griesel*, inebriated from one too many celebratory drinks, got behind the wheel of his car. For the first few hours of what should have been a happy birthday, he ended up behind bars in Sea Point police station.

Standing in his cell, the only thing he could think about was how he could get off the hook. 

Outside dawn was breaking. On the cell wall, he could just make out "Nice to kill'', scratched into the powder-blue paint with a fingernail. "Next time, think,'' someone had written centimetres away, while a faint message on the opposite wall read: "My wish was to be happy and try to start over''.

Seeking sanctuary in a holding cell

While Wynand tried to keep his mind occupied, his partner Neil Strydom (42)*, was locked in another holding cell, desperately trying not to lose his mind and to live through the pain.

"Time heals,'' was just visible to Neil, scratched into the wall before him. He kept repeating it while seven co-detainees took turns raping him.

The situation in the country’s prisons and holding cells are a direct public health issue, experts have warned. In its latest report, the organisation Just Detention International paints a gloomy picture, saying the way people are detained has a direct link to the country’s HIV epidemic.

The HIV-prevalence in South African jails and holding cells is twice that of the infection in the general public. By not preventing sexual violence amongst detainees, the government is sentencing people to the lifelong management of a disease, before they have even been found guilty of anything.

Neil was locked up an hour after Wynand. For "interfering" with a peace officer. To calm him down after Wynand's arrest. To shut him up.

"Jou mond is mos lekker los. You've got a big mouth. Let's see what happens to someone like you. We'll speak tomorrow,'' the policemen told him.

As soon as he entered the cell, he knew he was in trouble. He could smell it in the damp and the detainees’ sweat.

A night full of pain

The police had removed his belt and rings, but he still had a silver bracelet. The police hadn’t spotted it, but one of the men in the cell did

"If you give it to me, I’ll protect you," the faceless voice whispered, when the door had clanged the cell into darkness. Neil handed it over.

 "We are going to f*** you till you bleed,'' one of the other detainees growled. Someone grabbed his arms and ripped at his clothes.

"Don’t fight.’’ There was no chance of that. His 42-year-old, 60kg body was no match for the men. They took turns ripping him open. He stopped counting after the seventh man took over. He tried to focus on something else, but he felt the blood trickling down his leg.

He screamed, but no-one came. A policeman later joked that if they had to open a cell every time someone screamed, they wouldn’t get any sleep.

Finding out you’re positive

Rain drops trickled down the pub's window. More than three months had passed. Wynand had been waiting patiently for almost an hour for Neil to open up and tell him the result of the test. He had gone to the doctor on his own without letting Wynand know.

Neil drained his third Castle draft and stretched his hand across the bar to touch Wynand's. The waves crashed onto the Bantry Bay rocks throw up wisps of foam. The sky was steely grey.

"I'm sorry, so sorry. Forgive me,'' Neil broke the silence at last. "Please don't leave me. I've tested positive.”

After a couple of drinks they walked home, Wynand’s arm hooked through Neil’s. It smelt clean, with the rain pouring down. Every time Wynand tried to speak, Neil's face became a mask of agony.

Wynand was crying, but no-one would notice – his face awash with early spring rain. At their flat in Victoria Road he had to carry Neil up the stairs.

"Will you ever touch me again?'' Neil asked. "I don't want to infect you.''

"I won't leave you. Just give me a chance.''

Pulling Neil towards him, trying to envelope him, Wynand added: "I wish I could have protected you. I wish I had been there.''

The meeting of the lovers

They had met at a crossroads in both their lives. Neil was still coming to terms with his dad's death from a heart attack. And he had just lost his job, after the owner of his interior design company died of cancer. He was a white, middle-aged man without a job in South Africa.

Wynand was coming to terms with his sexuality. They met in Manhattans, a gay-friendly bar and restaurant in De Waterkant, the “pink village”.

Wynand did everything possible to resist being drawn deeper into a serious relationship with Neil. But Neil made him feel that he'd been missing out on something. He'd been missing out on his second half.

After the test, Wynand watched for signs of the virus breaking down his lover’s body. But all he wanted to see was the smile, and that returned a little more slowly.

Neil noticed that he looked 'hollowed out’. His body reminded him of death, he said. But it made it easier to know that Wynand loved him.

His feet hurt. They couldn’t go on hiking trips, as they’d done before. It was too painful.

Peripheral neuropathy made his feet, hands and back to go into spasms. The human immunodeficiency virus (HIV), which causes Aids, causes extensive damage to the central and peripheral nervous systems.

A rapidly progressive, painful polyneuropathy affecting the feet and hands is often the first clinically apparent sign of HIV infection. The pain never goes away.

After work, it became a ritual. Neil would take his socks off and Wynand massaged each toe, the bridge of each foot, each heel.

Eating was hard labour to Neil. Once he started ARVs, his appetite became almost non-existent. Wynand kept his bedside table stocked with tempting snacks: nuts, biltong and his favourite soul food, Chipniks.

Safe sex was always an obsession to Wynand. Twice a year he went for an HIV test.

One of the first things Neil noticed about Wynand, when he paid for a meal, was the free clinic visitor’s card in Wynand's wallet.

Sleeping with the enemy

Until Neil's test result, Wynand had never been close to anyone with the virus. Now he was sleeping with the enemy - and he’d never been happier.

The love was more than the fear. But he still got tested every six months – just to make 100% sure.

Every night before getting into bed, Neil sorts four types of medicine into two small heaps of pills -one for tonight and one for tomorrow morning. One Combivir tablet in each pile. One Virimune in each. That takes care of the virus.

Half an Epilim 500, an anti psychotic, tonight. The other half tomorrow. And a yellow and white Venlor XR 150mg in the morning. An anti-depressant. There are side effects: he lost his appetite, lost 10kg in two years, has constant headaches and feels drained and tired. 

Sometimes Neil wonders why he keeps on taking the medicine. Then he repeats his mantra to himself: "You don't want to die. You don’t want to die.''

* Pseudonyms used

Treatment: the earlier the better.

HIV treatment starts too late, was the overriding message at this year's International Aids Society (IAS)’s conference in Cape Town. The South African government’s policy until now has been to only provide free ARV treatment to patients with a CD4 count lower than 200.

"There are cases where the immune system at a CD4 count of 350 are already compromised and the possibility of opportunistic infections become much more likely," said Professor Prashini Moodley, head of the Department Infection Prevention and Control at the University of KwaZulu-Natal.

"HIV drives TB."

Neil was lucky. After he tested positive he was put on ARVs straight away. Would he still be as healthy as he is now if his doctors waited for his CD4 count to drop below 200? Would his partner still be HIV negative if treatment was postponed until he was at death’s door?

"Treatment saves lives and puts people back to work and makes them productive as soon as possible," says Julio Montaner, director of the IAS.

"The use of ARVs inhibit HIV transmission. For discordant sexual partners with a different HIV status it is important to start the treatment way above a CD4 count of 350 to keep the HIV negative partner virus free."

In 1996 the IAS issued treatment guidelines recommending combination therapy containing three or more antiretrovirals. This type of regimen called highly active antiretroviral therapy, or HAART.

Multiple drugs given concurrently were more effective, however this increases the potential for side effects. That is why clinicians were reluctant to start throwing handfuls of pills at people living with HIV.

Share this

Numerous Unplanned Pregnancies in Vertically-Infected Teenagers. 4/5/10

Around one in seven adolescent females with HIV have been pregnant


4 May 2010
By Roger Pebody

Around one in seven adolescent females with HIV have been pregnant, according to an audit of UK clinics reported at the joint conference of the British HIV Association (BHIVA) and the British Association of Sexual Health and HIV (BASHH) last month.

Most of the pregnancies were unplanned and a quarter were terminated. Although there were problems with adherence to antiretroviral medication in many cases, fortunately none of the pregnancies resulted in transmission of HIV to the infant.

These cases highlight the need for sexual health education for those young people who acquired HIV from mother-to-child transmission in the 1980s and 1990s. To help health professionals with this work, the HIV in Young People Network (HYPNET) and the Children’s HIV Association (CHIVA) last week published draft guidance on the management of sexual and reproductive health for adolescents living with HIV.

The pregnancy audit was conducted by sending a questionnaire to 19 participating clinics, who were asked to review the medical notes of all vertically-infected females who were aged twelve or over attending the clinic. Information was collected on a total of 172 individuals, of whom 27 had had a total of 36 pregnancies.

Of the 36 reported pregnancies:

  • 75% were unplanned.

  • 86% involved regular partners.

  • 39% of partners were not aware of the woman’s HIV status.

  • 25% of the pregnancies were terminated.

  • 14% ended in miscarriage.

  • 50% resulted in a live birth and 11% in an ongoing pregnancy at the time of reporting.

Of the 18 live births, 89% of the mothers were on combination therapy at the time of delivery. Women on therapy had a median CD4 count of 252 cells/mm3 (range 54-437) and a median viral load of 79 copies/ml (range < 50 to 588,844).

In only 8 of the 18 live births (44%) did the mother have an HIV viral load of <50 copies/ml before delivery. 80% of mothers had poor adherence to treatment during pregnancy, with two being given Directly Observed Therapy (DOT).

One third of the babies were delivered prematurely, and five of them required neonatal intensive care. Three had a low birth weight. No congenital anomalies were reported.

No cases of HIV transmission were recorded.

Two-thirds of the young mothers were reported as having complex social needs, with one quarter of their babies requiring foster care.

Draft guidelines

This is the first time that specific guidance on managing the sexual and reproductive health of HIV-positive adolescents has been published. The document makes it clear that, even if the issue is not raised by the young person, then paediatricians should take responsibility for covering sexual health education and needs during consultations, with the process starting well before sexual maturity is reached. The guidance states that HIV-positive adolescents require the same sexual health information as their HIV-negative peers, as well as further help on applying it while living with HIV.

Topics which need to be discussed include preventing the transmission of HIV and other sexually transmitted infections; contraception; symptoms and treatment of sexually transmitted infections; vaccinations; HIV disclosure; post-exposure prophylaxis; conception options and fertility issues; pregnancy and avoiding mother-to-child transmission; options if there is an unplanned pregnancy; sexual exploitation and sexual violence; sexual difficulties; psychological support for negotiating safe sex, self-assertion, bullying or other issues.

The guidance explores some of the issue involved in delivering sexual health work with this age group. Sexual health services for young people should be confidential (without disclosure to a parent or guardian), provided that the young person is assessed as being ‘Gillick competent’ (has the maturity to make their own decisions and to understand the implications of them). For under 16s, Gillick competence needs to be assessed at each clinical visit as it can change over time.

The guidance notes that adolescents value consultations that are non-judgemental, give them correct information and which maintain confidentiality. Professionals are encouraged to use simple language, check understanding and not overload adolescents with too much information. They should not make assumptions about whether the young person is sexually active or what their sexuality is.

The draft guidance is open for comments and feedback until May 28.


Williams B. Pregnancy outcomes in women growing up with HIV acquired perinatally or in early childhood. HIV Medicine 11 (supplement 1), P144, 2010.

Share this

People with HIV with Higher CD4 Counts should Not Miss Seasonal Flu Jabs. 1/9/10

In HIV-negative individuals, median levels of influenza-specific IgM and IgG increased significantly after the receipt of the vaccine.


By Michael Carter
1 September 2010

HIV-positive patients with a CD4 cell count below 350 cells/mm3 have an impaired immune response to the seasonal influenza (flu) vaccine, Swiss investigators report in the September 10th edition of AIDS. They recommend that all HIV-positive patients should have an annual influenza vaccine to help them to establish flu-specific memory immune cells, the formation of which can be difficult after the immune system suffers serious damage.

The study was undertaken because investigators from Basel wished to assess responses to the seasonal influenza vaccine in HIV-positive patients. Blood samples were therefore taken from 24 HIV-positive patients and 31 HIV-negative controls immediately before administration of the seasonal flu vaccine in 2007-2008 and again approximately 30 days later. The production of two forms of influenza antibodies – IgM and IgG – and levels of flu-specific CD4 cells were measured.

All the HIV-positive patients had been taking antiretroviral therapy for at least three months and had a viral load below 200 copies/ml.

In HIV-negative individuals, median levels of influenza-specific IgM and IgG increased significantly after the receipt of the vaccine. In addition, increases in influenza-specific CD4 cell counts were observed in 92% of individuals.

Amongst HIV-positive patients with well-preserved immunity (a CD4 cell count above 350 cells/mm3), the administration of the vaccine lead to significant increases in levels of flu-specific IgM and IgG. However, only 64% of patients had an increase in their flu-specific CD4 cell count.

A poor response to the vaccine was seen in the HIV-positive patients whose CD4 cell count was below 350 cells/mm3. No significant increase in influenza-specific IgM antibody levels were seen, and only two patients had any IgM response at all. Moreover, only 44% of patients had an increase in their influenza-specific CD4 cell count. However, a significant increase in levels of post-vaccination influenza-specific IgG was observed.

“Increasing levels of IgG in this study group most likely reflects a memory response”, comment the investigators. They believe that this finding is important and “provides an immunologic rationale supporting the recommendation of annual influenza vaccinations throughout the course of HIV infection.”

Such vaccinations when a patient’s immune system is intact build up “broad and long-lasting” B-cell memory.

The importance of such memory cells was shown in the recent H1N1 pandemic. Children were especially vulnerable to this strain of flu because they lacked the protective antibodies that are developed from contact with earlier strains of flu.

“These preliminary data should trigger future research aiming to understand the molecular basis of the observed lack of IgM-production”, recommend the investigators.

The findings of the study also have significance for clinical practice as they “lend support to strictly enacting annual influenza-vaccination in all HIV-infected individuals regardless of their CD4+ T-cell count.”

These findings, which broadly correspond with findings from a sample of US patients showing that lack of response to H1N1 vaccine was associated with a low CD4 count, suggest that people with HIV with higher CD4 counts may derive the greatest benefit from current influenza vaccines, and that more research is needed to determine how to improve influenza vaccine responses in people with low CD4 counts.

In parrticular, argue the authors of a recent editorial comment in the journal AIDS, ensuring annual influenza vaccination in people with higher CD4 counts is likely to promote the build-up of B-cell memory while immunological competence is still maintained, ensuring that any subsequent CD4 cell decline does not impair responses to future influenza vaccinations.

Share this

Pholokgolo Ramothwala, "You Can Never Hide HIV Forever". 26/8/10

"I have two children who are HIV-negative and a partner that is HIV-negative"

26 August 2010

Johannesburg - Journalist and long-time HIV activist Pholokgolo Ramothwala, 32, was diagnosed HIV-positive at the age of 19. He runs his own communications company and writes an online diary about living with HIV. He spoke to IRIN/PlusNews about love, disclosure and discordance.

"I get hundreds of letters from people – the most frequent questions [they have] are about relationships and HIV disclosure.

"Delaying disclosure has got its own implications, because you fall in love with this person and it becomes more and more difficult to tell [them]. The one advice I have, that I always tell people, is that you can never hide HIV forever.

"Somewhere [along the way], your partner is going to want a child, or you are going to get sick, or have to start taking ARVs [antiretrovirals]; somewhere, something is going to happen that is going to make this person start wondering.

"From the first time I meet you, I'll tell you I have HIV – take it or leave it. I have a friend who called me last night to tell me that he broke up with somebody because she didn't want to accept that he's got HIV.

"I said, 'You know what? Move on. There's a lot more people out there that are accepting of HIV.' [In] South Africa there's almost six million people that are living with HIV ... [but] we behave like [that's not the case].

"Most people who are HIV-negative have a risk appetite for HIV – [in other words] because I don't look like I have HIV, people are willing to sleep with me.

"It might be uncomfortable, but it's the truth, and you have to talk to couples about that. We can talk about multiple concurrent partnerships, but there are people in stable relationships that are getting infected because they just didn't think about testing for HIV.

"I have two children who are HIV-negative and a partner that is HIV-negative, and it all happened because of the knowledge that I had [about HIV]. It sounds like a complicated science but it's not.

"I live with HIV every day in my house, I know what I need to do to protect my partner, I know how important it is to use a condom. I know what it is that I shouldn't do sexually, because for the past 12 years I've gained experience of what works and what doesn't.

"But the one challenge I always had was having to find that information. If I was not a journalist by profession, maybe I would never have known all these things."

Share this

Project Inform Forum Focuses on HIV and Aging. 22/10/2009

by Liz Highleyman liz@black-rose.com
Aging has become a key focus for people with HIV and their health care providers, but much remains to be learned about the medical and psychosocial aspects of the aging process in this population, which was the topic of a recent forum sponsored by Project Inform.
"We're facing a paradox," said Matt Sharp, Project Inform's new director of treatment and prevention advocacy. Having lived with HIV for more than 20 years, Sharp, 53, described himself as one of the lucky survivors.
"Many of us are thriving and we're dealing less with AIDS-specific issues, but now we're dealing with issues that come with age," he noted.
Due to effective antiretroviral therapy, life expectancy of HIV-positive people in the United States has increased dramatically – more than doubling between 1996 and 2005, according to one recent study – but still does not equal that of the general population.
By the year 2015, nearly half of HIV-positive people in the U.S. will be over age 50. In San Francisco, that figure already stands at 40 percent. While about 15 percent of newly infected individuals are over 50, people who have lived with the virus for years or decades face distinct challenges.
At the forum, held September 24, Sharp reviewed some of the chronic conditions facing people with HIV as they age, including cardiovascular disease, liver disease (often related to hepatitis B or C), kidney impairment, non-AIDS cancers (including anal and cervical cancer caused by human papillomavirus), bone loss (osteoporosis), neurocognitive decline, and "frailty," characterized by weight loss, weakness, and increased risk of disability and death.
With opportunistic infections and cancers now seldom seen among people on antiretroviral treatment, management of age-related chronic conditions has become a mainstay of HIV medicine.
Accelerated aging?
A growing segment of HIV research aims to tease out the causes underlying the apparent acceleration of the aging process in long-term survivors.
Many of these problems have been blamed on antiretroviral therapy over the years, and various drugs do appear to play a role. But it is increasingly clear that long-term HIV infection itself wreaks havoc on the body in ways that are not fully understood.
"For the last 10 years we've been so excited about therapy helping people live longer that we've gotten a bit selfish," said Dr. Steven Deeks of San Francisco General Hospital. "We now want people to live a normal lifespan with completely restored health, but we're not there yet."
Even low-level so-called undetectable virus in people on effective treatment – which in fact can almost always be detected using ultrasensitive tests – can trigger persistent immune activation. In addition, HIV damages the gut lining during early infection, allowing bacteria to leak out and ignite system-wide inflammation. Antiretroviral therapy dramatically reduces immune activation and inflammation, but does not bring back the normal pre-HIV state.
Furthermore, having a lower CD4 T-cell count has been linked to higher risk of non-AIDS diseases among people who are well above the 200 cell "danger zone" for opportunistic infections, or even the current 350 cell threshold for starting treatment. And while CD4 counts usually rise after starting treatment, the new cells may not work as well as those that were lost.
Chronic low-grade inflammation appears to be the common denominator underlying all these conditions, according to Deeks. It is also increasingly implicated in age-related disease among HIV-negative people, demonstrating that long-term viral infection is only part of the puzzle.
While researchers continue to study the interactions between long-term infection and the aging process, HIV-positive people can take steps now to prevent disease and improve their overall health. These include quitting smoking, eating a healthy diet, getting more exercise, and avoiding or reducing use of alcohol and recreational drugs.
"You don't need to join a gym to exercise, you just need to get your blood moving for 30 minutes a day," said Sharp. He also emphasized the need for cancer screening – including anal Pap smears and colon cancer tests – and vitamin D and calcium supplements to maintain strong bones.
As with diabetics, Deeks said, HIV-positive people should be treated aggressively to prevent cardiovascular events – the leading cause of death for older people regardless of HIV status. This includes "getting cholesterol not just down to normal, but as low as possible." As an added benefit, the cholesterol-lowering statin drugs also have a general anti-inflammatory effect, but they can interact with some antiretrovirals.
Looking to the future, researchers are exploring therapies (such as IL-7) to boost T-cells, nutritional therapy to protect the gut, anti-inflammatory drugs to control chronic immune activation (potentially including the recently approved antiretroviral drug maraviroc), and strategies to eradicate the last bit of latent virus.
Psychosocial issues
Shifting the focus to psychosocial issues, Peter Carnini from New Leaf: Services for Our Community discussed the isolation and lack of social support older people with HIV often experience. Many older gay men feel invisible, he said, and there is a "disconnect" between older and younger HIV-positive men in the community.
Long-term HIV survivors, he added, may struggle with what he called "fragmented life narratives" as they live longer than they ever expected, having not made plans for the future such as completing their education or saving money.
Other common issues facing older HIV-positive men include estrangement from families of origin, "survivor guilt," post-traumatic stress related to dealing with a life-threatening illness and frequent bereavement, changes in sexual desire and function, and difficulties with employment, finances, and insurance. Many of these issues, he noted, seem to be more acute for men of color.
"Often when we hit 40 or 50, it becomes a little more difficult to make friends, we don't go out as often, and isolation sets in," Carnini concluded. "Older gay men with HIV need to become more visible. This won't happen if you put your dinner in the microwave and turn on TV. It isn't going to change unless we change it."
Share this

Race Troubles: Why Do African-Americans With HIV Fare Worse? 04/09

Among the many reasons that African-Americans have a greater number of hospitalizations and don't respond as quickly or as positively to HIV treatment as members of other races is that they are more likely to be diagnosed with HIV later in the course of the disease.

By Donna M. Kaminski
Spring 2009

Since I began working as an HIV treatment educator in New York City, I've seen the faces of those I served change. As those faces grew to include primarily African-Americans and Latinos, I found myself both inspired and moved by my clients.

As a whole, they were deeply motivated to do as well on their treatment as possible. Many of them carried little cards logging their viral loads and CD4 counts. And they all knew their HIV meds like the back of their hands.

I found myself inspired by their desire to take charge of their health, but I also noticed that their journeys often had additional challenges. There was the fight to stay off the street, to stay off drugs, to find a place they could call home. Often there was a fight to repair their relationships with children, families, and loved ones. Many also had hepatitis C, diabetes, or high blood pressure. And many felt they just couldn't trust their doctors, perhaps due to their own experiences in the health system or from the shared distrust passed down from abuses like the infamous Tuskegee Syphilis Study (in which 399 African-American men were denied treatment for over 30 years).

Differences in Care

Among the many reasons that African-Americans have a greater number of hospitalizations and don't respond as quickly or as positively to HIV treatment as members of other races is that they are more likely to be diagnosed with HIV later in the course of the disease. In one survey of almost 6,000 people with HIV in 16 states, not only were African-Americans more often diagnosed at a later stage of the disease, but they were more likely to be tested for HIV only after having symptoms. This is significant, since those diagnosed later, when their immune system is weaker, have a harder time lowering their viral load and fighting other infections. So this is one reason for the greater impact of HIV among African-Americans, but there are also others.

Another critical factor facing many African-Americans is access to care. In the U.S. it has been found that women, African-Americans, and those with a history of injecting drugs are less likely to receive HIV treatment. While improved access to care has been a target of many programs, it continues to be an issue for African-Americans. In one study of 968 people who stopped or never started HIV treatment, African-Americans were almost twice as likely to change clinics or doctors, and most stopped medications during the study. In addition, African-Americans were almost twice as likely to hide their HIV status, showing that the stigma of HIV may be an obstacle to taking medication.

African-American women in WIHS reported significant levels of depression, but the study found that they were less likely to receive mental health treatment than other women. Other studies have shown that poverty, inadequate health insurance, racial discrimination, and mistrust of the medical establishment make access to care difficult and in some cases impossible. Age is also a factor -- at the recent Conference on Retroviruses and Opportunistic Infections (CROI) in Montreal, Alexandra Oster of the CDC reported on a study showing that age may be associated with limited access to care. When she looked at why 556 women with HIV had missed their first or annual Pap smears (a screening test for cervical cancer), she found that older age and lower CD4 counts were highly associated with not having the test. This is of particular concern, as we are seeing more people over 50 living with HIV.

Other Health Concerns

African-Americans are also often battling other diseases while living with HIV. From 1997 to 1999, the HIV Research Epidemiology Research Study (HERS) followed 1,300 women, mostly African-American, some of whom had HIV and some of whom did not. What they found was that there were fewer hospitalizations due to HIV than in earlier years, but the women with HIV in the study were hospitalized more often due to liver disease.

Co-infection with HIV and hepatitis C virus (HCV) has also affected African-Americans more than other ethnic groups. They are more often infected with HCV genotype 1, a type that is harder to treat, but that alone doesn't explain why they don't do as well on treatment. One study of standard HCV treatment (interferon and ribavirin) found that significantly fewer African-Americans responded well than did whites, even though both groups had genotype 1. And this study was not the only one to find this. In another study, as few as 26% of African-Americans on treatment maintained an undetectable viral load for six months, compared with 39% of whites. A larger number of African-Americans also reported HCV complications and were more likely to suffer from liver cancer.

Genetic Differences?

All this suggests that there may be genetic factors at play in some of the differences in response to treatment. One study found that African-Americans were more likely to have a genetic mutation called a CYP 2B6 allelic variant. People who have this mutation have difficulty breaking down Sustiva, which can build up in their blood and lead to more side effects like vivid dreams or difficulty concentrating. Not surprisingly, more African-Americans stop taking Sustiva, and that could lead to other problems. Having the CYP 2B6 mutation may cause Sustiva to linger in the body after it is stopped, increasing the risk of resistance.

ACTG 384, a study reported at the 2009 CROI, looked at 156 African Americans who had peripheral neuropathy (numbness or pain in their hands and feet). The researchers looked at the DNA of their mitochondria (the energy centers of cells). What they found was fascinating: people who had the L1c mutation in their mitochondria had a higher risk of having peripheral neuropathy. This mutation is different than one previously found among whites, and suggests there may be genetic reasons why different ethnic groups have a greater risk of certain side effects. A high number of African Americans (29%) experience peripheral neuropathy, and this research is the first step in understanding why. More studies are planned.

Another genetic factor found to affect the way African-Americans react to HIV treatment is the ApoC-III mutation. One group of researchers looked at gene mutations and the race or ethnicity of 626 patients enrolled in ACTG studies. While African-Americans had lower levels of triglycerides (a type of fat in the blood), those with the ApoC-III mutation had higher triglyceride levels after taking an HIV protease inhibitor. Latinos and other ethnic groups with this same mutation didn't see their triglycerides rise as high. This suggests that both race and genetics play a role in the way people fare on treatment.

African-Americans with HIV are at greater risk for other illness and diseases. One group of researchers noted that they were twelve times more likely than whites to develop end-stage kidney disease. This was true even for those doing well on HIV treatment.

African-Americans with HIV are also at greater risk for other illness and diseases. For example, one group of researchers from Baltimore noted that they were twelve times more likely than whites to develop end-stage kidney disease. This was true even for those doing well on HIV treatment. So HIV in itself seems to put African-Americans at greater risk for kidney disease, as well as diabetes and hypertension. In fact, a large European study (EuroSIDA) has found that people with HIV are more likely to also have diabetes and hypertension if they have kidney disease. Like the CDC study, they found this linked to lower CD4 counts, an AIDS diagnosis, and older age.


These results are disheartening, since African-Americans overall are harder hit by both diabetes and heart disease. Over 2.5 million African-Americans live with diabetes -- they are 60% more likely to have it than whites. African-American men die from diabetes complications 20% more often than do white men, and that number is 40% for African-American women. African-Americans are 30% more likely to die of heart disease than whites -- shocking, since in 1950, the two groups had equal levels of risk. There is no doubt that heart disease and diabetes are a problem even for African-Americans without HIV, and that these become further complicated by HIV.

The research is clear: African Americans face a host of genetic, physical and emotional factors that deeply affect their HIV treatment. While the CYP 2B6, L1c, and ApoC-III mutations have been found, there may be other mutations responsible for the differences in the way African-Americans respond to treatment. In addition, we also need larger studies to learn how best to modify treatment in people with these mutations. For example, one group started adjusting HCV treatment doses in African-Americans by weight. Another study of 362 African-Americans found that when their ribavirin dose was adjusted they were twice as likely to bring their HCV levels to undetectable and keep them there than those on the standard dose. Approaches like these may prove to be essential for African-Americans.

Looking Ahead

Much of this information supports what I already felt inside: that race does matter and that in many ways, African Americans experience HIV differently. So how do we address these differences? While it is clear that we need more information, the first step is acknowledging that there is a difference, and that it is complex. It is biological, social, and cultural -- a combination of factors that affects every African-American living with the virus. Some of the answers will come as more studies are done. Others will come from within each one of us, as we learn from each person with HIV and work to meet their needs.

Donna M. Kaminski, ACRIA's former Associate Director of Treatment Education, is a fourth year medical and MPH student.

Share this

Reconstructive Surgery for Facial Fat Loss is Feasible and Safe for Patients with HIV. 2/11/10

“a well tolerated, feasible tool to treat HIV-related face lipoatrophy”,

2 November 2010

Reconstructive surgery is “a well tolerated, feasible tool to treat HIV-related face lipoatrophy”, according to an international team of investigators writing in the online edition of AIDS. Danish, Italian and Spanish researchers came to this conclusion after reviewing studies examining the safety and effectiveness of various surgical options for the treatment of fat loss.

They found that treatments were generally safe, but that their effectiveness depended on the severity of the fat loss which an individual had experienced.

Disturbances in the processing and distribution of fat in patients taking HIV treatment were recognised soon after the introduction of potent, multi-drug antiretroviral therapy in the late 1990s. This syndrome of side-effects is called lipodystrophy.

Body fat changes in patients receiving HIV treatment can include the accumulation of fat around the trunk and at the back of the neck, and loss of fat from the buttocks, limbs and face. Fat loss is usually described as lipoatrophy. When it occurs in the face, fat is lost from the fat pads in the cheeks and the temples. 

A number of causes for lipodystrophy have been proposed. However the biggest single cause of fat loss has been identified as treatment with d4T (stavudine, Zerit), and to a lesser extent AZT (zidovudine, Retrovir).

Neither of these drugs is now recommended for use in routine HIV care in resource-rich settings and modern anti-HIV drugs are thought to involve a low risk of lipodystrophy.

Slow restorations in body fat have been seen in patients who have switched from d4T or AZT to alternative anti-HIV drugs. However, facial fat loss usually remains extensive and drug therapies for body fat changes have proved elusive.

Facial fat loss can be highly stigmatising and confers an ill or aged appearance. Moreover, patients with facial atrophy have reported loss of self-esteem, poor overall quality of life and mental health problems such as depression.

Reconstructive surgery has become the mainstay of treatment for facial fat loss in patients with HIV.

The article’s authors wished to provide “an updated comprehensive knowledge of the surgical approaches for reconstruction of HIV-related facial lipoatrrophy”. They therefore conducted a literature search to identify studies reporting on the criteria used to select patients for surgery; the reconstructive options used; outcomes; and side-effects.

A total of 27 studies were identified, but only two of the studies compared alternative therapeutic options.

Assessing eligibility

Two scales to assess facial lipoatrophy have been proposed. The first relies on photographic comparisons and the severity of patients’ fat loss is graded from 1 to 4. An alternative method of assessment used both photographic comparisons and CT scanning. Fat loss is then diagnosed as mild, moderate, or severe.

Surgical treatment of lipoatrophy can also be warranted because of its impact on emotional and psychological well-being.

An “Assessment of Body Change and Distress Questionnaire” has been developed and examines perceptions, attitudes, feelings, emotions, actions, and satisfaction related to appearance and body image. The investigators describe this as “an extremely useful tool.”

The perception of doctors and patients is the main criteria used to assess the success of reconstructive surgery for lipoatrophy. Ultrasound and CT scans have also been used. However, the investigators caution that “ultrasound evaluation of the cheek is a controversial end point.”

Reconstructive options

Three types of reconstructive surgery have been used: autologous fat transfer; biodegradable agents, for example polylactic acid; and non-biodegradable products.

All types of intervention can have short-term and chronic side-effects. They may also involve complications such as infections, or absorption or slippage of the filler.

The investigators note that “it is surprising how very few studies have assessed safety, efficacy and durability of these interventions, and only two partially randomized studies have compared different treatment approaches.”

The first of these studies was conducted in Italy. Patients were randomised into three arms and were treated with either fat transfer, or the biodegradable polylactic acid, or the non-biodegrable polyacrylamide hydrogel.

Fat thickness was comparable between the three treatment arms at the end of the study. However, individuals who received fat transfer reported poorer satisfaction with their appearance. In addition, a small number of patients who were treated using the fat transfer technique developed a “hamster” appearance.

These three products were examined in the second study which had a non-randomised design. On entry to the study, 50% of patients were assessed as having moderate or severe fat loss. This fell to 8% after the completion of treatment. Patient satisfaction and quality of life improved significantly in all three groups.

Choosing a treatment

The investigators stress that corrective procedures should only be performed by expert healthcare staff. In particular, only plastic reconstructive surgeons should be allowed to undertake procedures involving fat transfer.

Possible improvements in facial appearance should not be the only criteria guiding a choice between biodegradable and degradable products, state the authors.

They explain, “biodegradable agents offer a greater safety profile, having a lower incidence of adverse effects compared to nonreabsorbable products.”

However, the effects of polylactic acid and similar treatments are often short, meaning that patients require subsequent courses of therapy.

Nevertheless, the investigators believe that biodegradable fillers “should be first choice in younger people suffering mild to moderate facial lipoatrophy”.

But the cost and “policy reimbursements” are likely to be a factor in the choice of therapy.

Regardless of this, the investigators comment: “Patients must be informed about the options that suit their necessities, and participate to the decision of what material will be used in his or her case.”

Conclusion .

They conclude that “plastic surgery seems to be a well tolerated, feasible tool to treat HIV-related face lipoatrophy”, and that the choice of therapy will depend on severity of the condition.

The authors add that new controlled studies are needed “to define the long-term benefits and safety of the different surgical techniques”.


Guaraldi G et al. Surgical correction of HIV-associated facial lipoatrophy. AIDS, online edition: DOI: 10.1097/QAD.0b013e32833f1463, 2010.

Share this

South Africa: Mlungisi Dlamini, "We Used to Have This Saying ... 'Any Meal Might Be the Last'". 9/7/10

"We didn't care about the future."

9 July 2010

Johannesburg - The future was something Mlungisi Dlamini took for granted; it was not something he planned for until he was diagnosed HIV-positive. He now works with the South African AIDS lobby group, Treatment Action Campaign (TAC), and talked to IRIN/PlusNews about his diagnosis and how it changed his life for the better.

"I was diagnosed in 2000 but I usually say I was diagnosed in 2001, because when I was diagnosed in 2000 I didn't receive any counselling. I was just tested because the doctor suspected something and I agreed.

"When he delivered the results he just came and said, 'Okay, you are HIV-positive and you don't have to go around just killing other people."

"In 2001 there was a roll-out of voluntary counselling and testing ... that's when I went [for testing] again and received proper counselling. Being diagnosed with HIV - I didn't have a problem with that because I just wanted to know, believe you me, I disclosed the very first day to my family and to my friends.

"I started getting sick in 2003-04, when the government started rolling out ARVs. I had pneumonia and I treated that, but it happened I had tuberculosis (TB) but the doctors [at the public clinics] couldn't find it for about five months.

"Finally, my former district coordinator at TAC sent me to a private clinic in Soweto, called Lesedi, [where doctors diagnosed my TB] and then I started TB treatment. I told the doctors to wait until I had stopped my TB treatment to start me on ARVs [antiretrovirals].

"ARVs changed my life a lot. I got exposed to the TAC, treatment literacy and virology, and that changed a lot in my mind, it gave me a will to love to help people to understand the virus.

"One of the things about growing up in the townships is that I always had bad company ... We didn't care about the future. We used to have this saying - it was from [a movie about the American mafia,] the Gambino family – 'Any meal might be the last'.

We used to live by that. We drank, we partied, we drove cars, had women – that was part of life in the township."

Share this

South Africa: Positive Heroes. 14/6/10

I can tell other people who are sick, who are also HIV positive, they can also do what I'm doing and they can also live healthy.


By Fathima Simjee
14 June 2010

On Sunday 30th May, more than 23 000 runners took part in the Comrades marathon between Pietermaritzburg and Durban. One of the teams that participated was a group of HIV+ athletes. In this insert the runners from Positive Heroes explain the importance of showing that people with HIV are still able to achieve their dreams.

Positive Heroes is an organisation of people living with HIV. They are ordinary people, doing extraordinary things. Evelina Tshabalala is part of a team from Positive Heroes, who will run this year's Comrades marathon.

Evelina: I'm an athlete, I said OK I think we can make a team for athletes like to show people that we can do it even if you have HIV

It's 5.30 in the morning in Pietermaritzburg, and the start of the Comrades marathon. These runners face a gruelling 89km before they finish in Durban.

For the members of Positive Heroes, living with HIV hasn't stopped them from competing . They simply take their treatment on the run.

Evelina: The whole team will be taking their ARV's during the race, myself I take mine at 7 o'clock. But even when I'm running I feel myself that something must happen now and then I check my time and I see its 5 min to seven so I take my ARV's.

One of the other team members, Kenneth methula was hospitalised last year with tuberculosis. He's run the Comrades seven times before but this year is different.

Kenneth: But for me this is my eighth race and I have no fear, I have no fear (laughs). It's just that it's my first year running with this virus, so I musn't panic, and I don't want to do anything that will make me doubt.

Willie Engelbrecht discovered he was HIV positive in 2001. He has continued to run marathons to prove he too can achieve great things . Despite his HIV status.

Willie: You can feel the sickness in your body, and this sickness is very sneaky, it unravels very slowly in your body, when you look again you just get weaker, get weaker in your legs

We can show the people outside that we can fight this sickness and that we can still stand on our own two legs. We're not going to lie down or be pushed down, we can still move forward.

Of the 23000 runners who started the race, not all of them completed it. All of the positive heroes team crossed the finish.

Participant: I feel very well, very strong. I was so happy, I break my time, my 10hours.

The comrades marathon is the ultimate test of human endurance, and it's a major achievement for any runner.

This was best race, I don't feel sore in my body and it's my 4th comrades that I've done

I can tell other people who are sick, who are also HIV positive, they can also do what I'm doing and they can also live healthy.

Share this

The Link Between HIV And Depression. 16/05/09


When HIV enters the body, it predisposes the person to several mental illnesses, one of which is Depression. This report explores the link between HIV and depression.
In her doctoral thesis, Prof Rita Thom, a professor in the Division of Psychiatry at the University of the Witwatersrand, investigated the relationship between HIV and Depression.
“Once the HI virus has entered the body, it affects deep structures in the brain that include the emotional areas and can result in depressive illness. As HIV causes dementia, it can cause a psychotic illness. Then, there’s the stress of having a serious illness and the associated stigma. So, there is a lot of psychosocial stress”, said Prof. Thom.
She added that there are bio-chemical changes that occur in the brain, as a result of the damage to the neurotransmitters. “Those change with the depressive illness. It (HIV) can cause a mood disorder”, said Prof. Thom.
Depression is a major concern not only to HIV-positive people, but also to those who are HIV-negative, according to Raakhee Singh, a Clinical Psychologist at Carstonhof Clinic in Midrand, Johannesburg.
“A person that is depressed would generally focus less. You probably would engage in sexual behavior and therefore not take on the protection factors in terms of HIV”, said the Psychologist.
Experts say getting treatment at the early stages of Depression is crucial, especially if the patient is HIV-infected. “It’s absolutely essential”, Prof. Thom said, adding that, “the evidence is clear that if you don’t treat someone with a depressive illness, that has serious implications, not only in terms of the quality of life, but actually in terms of their adherence to HIV treatment and disease progression”.
Share this

The Link between Mental Health & HIV Living with AIDS # 447. 9/9/10

People living with HIV and AIDS are at an increased risk of developing serious mental disorders,


By Khopotso Bodibe
9 September 2010

People living with HIV and AIDS are at an increased risk of developing serious mental disorders, according to mental health professionals at a Johannesburg meeting this week.

The meeting resolved that mental health interventions should be incorporated into existing AIDS services.

Studies from all over the world show that mental health disorders are growing fast among people infected with HIV compared to the general population. People with HIV have double the incidence of mental illnesses of HIV-negative people. Cluster Manager of the Non-Communicable Diseases Unit in the national Health Department, Professor Melvyn Freeman, was involved in a study that showed similar results in 2007.   

“In the general population it was found that South Africa has 16.5% of people suffering from some form of mental disorder. When you come to people living with HIV, it went up to 43.7%. That’s a huge difference”, Prof Freeman said.

“When you look at the higher rates among HIV-infected people, you have to ask the question: Is this because they had a prior condition and their vulnerability led to their infection or is it that, because they have contracted HIV, it has mental impact on them, and, therefore, this raises the numbers of people living with HIV who have mental disorders. This is a complex issue and I would like to suggest that both are true… that it’s very, very likely that mental disorder is both a risk factor and a consequence of HIV”, he continued.

Quoting a study conducted among school-going youths in KwaZulu-Natal, Freeman supported the theory that having a mental disorder is a risk factor for contracting HIV.    

“They looked, initially, at the relationship between knowledge of HIV and risk behaviour. This study was done by Dr Omar and Martin Prins, and others. Not surprisingly, from what we know, there was very little correlation between knowledge of HIV and risk behaviour. They also measured these youths’ depression and not surprisingly, in my view, they found that those who had higher levels of depression had higher risk behaviours. That makes sense to me because if you don’t really care about your life and your future, are you really going to take the protection that you should be taking? So, depression, then, for me, is a key risk factor for contracting HIV. Having a mental disorder – whether it’s a serious mental disorder or a more common mental disorder, such as depression - the risk factor is higher”.

Freeman also showed how a mental health disorder can be as a result of having HIV.               

“We have to look at the other side. What does it feel like to actually be told that you have HIV? How do you cope with this? Who do you tell? Who don’t you tell? How are you going to be accepted? People living with HIV have informed me that this is a real, real difficult thing to handle and if you do not have support; and if you do not have help to get through this initial period and as you have to live longer with HIV, it does become a difficult thing to live with”.

Professor Rita Thom, a psychiatrist with more than 30 years experience, added that from a medical perspective, it’s not uncommon for people living with HIV to acquire a mental health condition. She said these mental health conditions can be divided into three groups.

“That is the HIV-associated neuro-psychiatric disorders. Those are the disorders that result from HIV brain infection; then you’ve got HIV and serious mental illness, which is quite complicated because it includes both some of the results of HIV brain infection as well as people who have a primary psychiatric disorder and then become HIV-infected; and, then, there is a very large group of people who have HIV and what we call common mental disorders, which are depression, anxiety, substance use disorders”, said Prof Thom.

Deputy Minister of Public Works, Hendrietta Bogopane-Zulu, attended the meeting. She expressed concern that it has taken the mental health service provider community too long to articulate themselves on the issue even when the inextricable link between mental health illness and HIV was evident for many years.    

“Those in the forefront of mental health have actually not rolled up their sleeves and taken up the fight. Three weeks ago I’ve gone to three funerals of women with mental disabilities in the former Transkei. They are dying. And they are dying because all of us in this room, operating in this field, we have actually not invested enough time. And a lot of people with mental illness that are supposed to be on ARVs are not on ARVs”, she said.

As the current National Strategic Plan on HIV and AIDS is coming to an end, mental health professionals resolved that they need to organise themselves to lobby for the recognition of mental health and HIV and AIDS as co-morbidities whose treatment approaches must be integrated in the next National Strategic Plan.

Share this

UCSF 'Fountain of Youth' Pill could Restore Aging Immune System. 13/12/10

medication that restores key elements of the immune system

13 December 2010

UCSF researchers have identified an existing medication that restores key elements of the immune system that, when out of balance, lead to a steady decline in immunity and health as people age.

The team found that extremely low doses of the drug lenalidomide can stimulate the body's immune-cell protein factories, which decrease production during aging, and rebalance the levels of several key cytokines – immune proteins that either attack viruses and bacteria or cause inflammation that leads to an overall decline in health.

The initial study, which was designed to define the dose range of such a therapy in a group of 13 patients, could lead to a daily pill to boost immunity in the elderly, the researchers said. Data will appear in the January issue of the journal Clinical Immunology, and can be found online here

The identification of a drug to reverse the immunological decline in aging, known as immunosenescence, is the culmination of years of research by Edward J. Goetzl, MD, at UCSF and the National Institute on Aging, into how cytokine levels change as people age, how that varies by gender, and which changes dictate whether someone will be healthy into their 90s or begin a downward cycle of decline starting in middle age.

"No one's really talking about longevity and lifespan now, but about 'health span,'" said Goetzl, director of UCSF Allergy and Immunology Research, which focuses on developing new diagnostics and treatments for allergic and immunological diseases.

"If, at age 50, your cytokine levels are the same as they were at 25, you'll probably stay healthy as you age," he said. "But if they're heading downhill, we need to do something about it. If you could take a low-dosage pill with no side effects, wouldn't you do it?"

In 2009, Goetzl had studied a group of 50 elderly adults through the National Institute on Aging, examining their levels of key cytokines – Interleukin (IL)-2, IFN-gamma and IL-17 – and discovered that truly healthy 70-80 year old women had the same levels of those as did healthy 20 year olds.

However, elderly men and frail women who showed increased levels of inflammatory diseases and weakened defenses against infections tended to have lower levels of the first two cytokines, which are protective, and higher levels of IL-17, which is linked to inflammation. That imbalance, the researchers found, began in late middle age.

They then set out to find a drug that could raise IL-2 and IFN-gamma and either have no effect on IL-17 or lower it.

"We now had a profile – in humans – that we could take to test tubes to say, 'Does this drug have a desirable effect?'" Goetzl said. "Our job was to find a therapy that not only works, but does so at a dose range with no side effects."

The team focused on three classes of drugs, among them the one that includes lenalidomide – a derivative of thalidomide – which is undergoing a renaissance, Goetzl said.

First introduced in the late 1950s as a sedative, thalidomide was never approved in the United States, but was withdrawn from the world market in 1961 after causing severe birth defects in infants whose mothers took the drug to reduce nausea during pregnancy.

In recent years, however, lenalidomide has been found to be an effective co-therapy for some cancers, particularly multiple myeloma and kidney tumors, as well as leprosy, at doses of 5 mg to 20 mg per day. Those cancers are tied to a drop in IL-2, the main cytokine that Goetzl's team had linked to declines in aging immune systems.

In this study, the team tested the drug in healthy seniors, each of whom were matched in race, gender and national origin to a healthy young adult participant. They found that extremely low levels of lenalidomide – 0.1 μM – optimally stimulated IL-2 production in the young people (21-40 years) roughly sevenfold, but stimulated IL-2 production in patients over age 65 by 120-fold, restoring them to youthful levels for up to five days. At that dosage, the drug also increased IFN-gamma up to six fold in the elderly patients, without suppressing IL-17 generation.

The researchers also found that lenalidomide had many other beneficial effects on the elderly participants' T cells, including better migration throughout the body, more efficient patrolling activity and longer survival after defending the body against an infection.

The team plans to begin larger-scale clinical trials in 2011 to test the drug's effectiveness and hopes for broader availability within a few years.

Share this

Uganda: When Do We Tell Children They Are HIV Positive? 3/6/10

A Ugandan draft policy recommending that HIV-positive children be informed of their status by the age of 10 has drawn mixed reactions from health workers.

3 June 2010

Kampala — A Ugandan draft policy recommending that HIV-positive children be informed of their status by the age of 10 has drawn mixed reactions from health workers.

The previous policy required parental consent to tell children under the age of 12, but the new policy allows health workers - with the support of parents and guardians - to disclose HIV status after the child has been prepared and an assessment of their ability to understand and deal with the condition has been made.

Dr Benson Tumwesigye, national HIV testing and counselling coordinator in the Ministry of Health, said the new policy was intended to improve children's adherence to their life-prolonging antiretroviral (ARV) medicines, which would be easier if they knew why they had to take the drugs.

Better adherence

"In my experience a child disclosed to at an early age copes better than those who get to know their status when they are teenagers. They easily adapt to the new lifestyle as adolescents growing up, and adhere better [to ARVs]," said Cissy Ssuuna, counsellor coordinator at the paediatric HIV clinic of the Baylor College of Medicine in the capital, Kampala.

The older ones cry because they come in confident that they have never had sex, not knowing that they acquired it [HIV] at birth

"With some children - as early as at four years - they know something is wrong with them and ask so many questions about why they are taking drugs and their siblings are not taking them; they ask their parents when they can stop taking drugs."

Ssuuna stressed the need to involve parents and guardians as much as possible, and to ensure children were properly prepared to deal with the news of their HIV status.

A Ugandan study in 2006 indicated a need for service providers to support caregivers in disclosing their children's HIV status to them, so as to ensure adherence to treatment.

Hard to tell

Another study, in 2008, said stigma linked to HIV was one of the main reasons disclosure to children was so sensitive. Parents also feared disclosing their children's status to them because it meant disclosing their own.

A lack of clear guidelines was another problem. "Counselling policy directors confirmed the absence of policy and training guidelines on the subject of parent-child disclosure," the study said. "Counsellors reported improvising, and giving inconsistent advice on this common concern of clients."

Many service providers were hesitant about adopting the new policy. "It is not a good thing because of stigma; some of these children do not understand, and they may boldly announce, 'I am HIV positive', in public places. They are not like adults who can evaluate what to say and when," said Norah Namono, public relations officer for Mildmay Uganda, an HIV treatment centre in the capital.

Read more:

-The cost of keeping children from knowing their HIV status
-Positive teens find refuge at their own club
-Shielding children from their HIV status does more harm than good

Love, Positively

"Why should they say that children need to know their status when there are adults [who do not], like men who do not tell their wives?" one mother at the Mildmay centre asked. "There is no policy on partner notification; why should we sacrifice the children first?"

Ssuuna noted that disclosure, even to older children, could come as a shock. "The older ones cry because they come in confident that they have never had sex, not knowing that they acquired it [HIV] at birth," she said.

"The younger ones are partially disclosed to, telling them that they have to take their drugs religiously lest they fall sick because they have a chronic disease."

All the service providers IRIN/PlusNews spoke to said they would require more information and guidance before they could adopt the new policy.


Share this

Zinc Supplements: A Safe, Cheap and Effective Way of Preventing Dangerous CD4 Cell Loss in Patients with HIV? 13/5/10

Zinc supplementation significantly reduces the risk of CD4 cell counts falling below the critical 200 cells/mm3 level

By Michael Carter

13 May 2010

Zinc supplementation significantly reduces the risk of CD4 cell counts falling below the critical 200 cells/mm3 level, US investigators report in the June 15th edition of Clinical Infectious Diseases.

Daily doses of zinc also reduced reported diarrhoea.

“Nutritional levels of zinc supplementation given to HIV-infected adults resulted in a 4-fold decrease in the likelihood of immunological failure”, comment the investigators.

Adequate zinc levels are essential for good immune function. However, research has shown that as many as 50% of HIV-positive patients have deficient levels of zinc, and this has been associated with faster HIV disease progression and an increased risk of death.

Supplementation with zinc has been shown to delay HIV disease progression.

The risk of potentially life-threatening opportunistic infections is high for HIV-positive patients when their CD4 cell count falls below 200 cells/mm3. When a patient’s CD4 cell count falls below this threshold, they are defined as having experienced immunological failure, as are individuals whose CD4 cell count does not increase after starting HIV treatment.

Investigators in the US wished to see if daily supplementation with zinc helped to reduce the risk of immunological failure, illness, and death in a cohort of 231 HIV-positive patients in the United States.

These individuals were equally randomised to take a daily dose of zinc (15mg men, 12mg women) or a placebo. The study lasted 18 months, and the patients were monitored at regular intervals.

The mean age of the study participants was 43 years, 77% were black and 73% were men.

Antiretroviral therapy was being taken by 62% of patients, but only 29% of these individuals had an undetectable viral load.

At the end of the study, the patients who received supplementation had significantly higher zinc levels than those who were randomised to receive the placebo (p = 0.047).

Zinc supplementation was safe, and there were no serious side-effects were reported.

There was no evidence that zinc supplements lowered viral load. Similar proportions of patients taking antiretroviral therapy in both arms of the study had a detectable viral load.

However, the investigators found that zinc supplementation reduced the risk of immunological failure by approximately 75% (RR = 0.24; 95% CI, 0.10-0.56, p = 0.002).

On entry to the study, a third of patients reported a history of diarrhoea within the last twelve months, and 12% said that this had been severe. Zinc supplementation reduced the risk of diarrhoea by 60% (p = 0.19), and the investigators found a significant link between low zinc levels and reporting diarrhoea (p < 0.001).

There was no evidence that taking zinc supplements reduced the risk of death. A total of eleven patients in the treatment arm died compared to eight in the placebo arm.

A subgroup analysis was performed that was restricted to the patients taking antiretroviral therapy who had an undetectable viral load. In total, four patients experienced immunological failure, and all were taking the placebo.

The investigators suggest that zinc supplementation prevented immunologic failure by improving thymic function.

They conclude, “this evidence supports the recommendation of zinc therapy as a safe, simple, and cost-effective tool to improve the immune response and to reduce morbidity and should be considered as an adjunct therapy for HIV infection.”


Baum MK et al. Randomized, controlled clinical trial of zinc supplementation to prevent immunological failure in HIV-infected adults. Clin Infect Dis 50: online edition, 2010.

Share this

“HIV Saved my Marriage”. 10/10

Mom of two, Cecelia Sitshaka, on living with HIV and taking charge.

October 2010

Cecelia Sitshaka learned she was HIV-positive in 2002, married and pregnant with her second born. Since then she has saved her unborn child from the virus and salvaged a marriage that was on the rocks.

“The counsellor told me, ‘Cecelia, you are positive.’ I was so shocked. I closed my eyes and said, ‘tell me again.’ I can’t explain how I was feeling, I was angry at everything, I said to myself. ‘It is my husband that brought this to me.’ I am going to be sick and die, so will my baby. I was scared for my firstborn, he was still very young.”

Cecelia decided to rebuild her life. The first hurdle was to share the news with her husband, a task that required all her inner strength. The confidence that the virus demanded out of her, allowed her to shirk off the excruciating yoke of her husband’s physical, emotional and psychological abuse. “HIV saved my marriage,” she says.

The stigma associated with HIV in the lives of mothers such as Cecelia results in many HIV-positive mothers-to-be to fall through the cracks in the healthcare system. Medical interventions targeted at the prevention of mother-to-child transmission (PMTCT), often fail because HIV-positive women fail to access treatment. Through an HIV/AIDS and PMTCT education and support program, Cecelia’s second child was born free from HIV.

The estimated number of South Africans infected with the virus by year end 2005, was in the region of 5.5 million, according to the UNAIDS annual survey based on figures on the prevalence among women diagnosed at public antenatal clinics. Women account for more than half (58%) of adults living with HIV/AIDS.

For 33-year-old Cecelia, refusing to be a statistic was the beginning of a long journey of a thousand miles. She would not quit on her children, family and ill-informed community. “I have been involved actively in the community, I have become like a social worker. People come to me for advice, they have seen me on TV and have often disclosed to me.”

Through talks and outreach projects she has become an icon in her Khayelitsha community. In March 2006, Cecelia was a special guest of the then US First Lady, Laura Bush, at a function in the White House East Room. Cecelia was asked to address all of the distinguished guests and diplomats in attendance and for this she received a standing ovation.

The woman Cecelia is now certainly not the woman that was. She has overcome immense adversity, and leaves many humbled by her positive aura. Her marriage and family changed. She is a mother of two healthy babies, her husband has turned full-circle, even going as far as seeking advice from her on Anti-Retroviral Therapy (ARVs).

Now Cecelia’s sights are set on a tertiary course in training and development. She is happily married and continues to inspire those closest to her.

Share this

Travel Restrictions - General Information. 11/01/08

104 countries have special regulations concerning entry and residence for people with HIV and Aids.

If you want to know more about travelling when you are HIV Positive

- Visit the EATG (The European AIDS Treatment Group) website. A list of countries and the restrictions that apply is available here

- View the CDC recommendations for travel and immunizations for “The Immunocompromised Traveler’ here wwwn.cdc.gov/travel/yellowBookCh9-Immunocompromised.aspx

- “On the Road With HIV: A Guide for Positive Travelers” is available from the website of The Body

- The UK organisation NAM has a comprehensive section on travelling for people living with HIV on their website


Share this

Response to UKIP leader's discriminatory remarks 10/10/2014

Published at International HIV/AIDS Alliance
10 October 2014

The International HIV/AIDS Alliance is appalled by the discriminatory statements made by UKIP leader Nigel Farage about people living with HIV being barred from entry to the UK.

Not only are Mr. Farage’s comments hugely stigmatizing, they are also out of date and show a complete lack of understanding of the issues.

Whilst there are many countries around the world that restrict the entry, residence and stay of foreigners who are HIV positive, these countries are simply perpetuating stigma and discrimination against people living with HIV by singling out HIV as a “dangerous disease”.

In recognition of the fact that such entry restrictions have no impact on the HIV epidemic, the US removed them in January 2010. And to the UK’s credit no government in the last thirty years has ever put in place border controls against people living with HIV.

Reacting to Farage’s remarks, Alvaro Bermejo, Executive Director of the Alliance, said: “As a UK-based international organisation whose quality of work and global leadership depends on being able to recruit people from communities most vulnerable to HIV, whether living with HIV or not, we strongly condemn his comments.”

Share this

Ukraine Lifts Ban on HIV-Positive Visitors. 29/09/2015

Published at Yahoo.com

5 August


Activist and HIV infected people holds candles as they&nbsp;&hellip;Kiev (AFP) - Ukraine said on Wednesday it had removed its restriction on entry and foreign travel for HIV-positive people apart of growing efforts to improve relations with Europe after decades of Moscow rule.

The ex-Soviet state's Deputy Health Minister Igor Pereginets said the repeal of the 14-year ban was one of the conditions put forward by the European Union in the ongoing visa-free travel talks.

"This regulation was repealed (in June) for both Ukrainian citizens travelling abroad and for foreigners entering Ukraine," Pereginets told AFP.

Kiev hopes to strike an unrestricted travel agreement with Brussels next year and apply for EU membership by 2020.

Ukraine's human rights commissioner called the health ministry's decision "a significant step forward in our defence of human rights."

"Ukraine now joins some 140 progressive nations that also lifted such bans," commissioner Valeriya Lutkovska's office said in a statement posted on Facebook.

Ukraine, a nation of about 40 million people that has seen nearly 7,000 killed in a conflict that broke out 16 months ago, has one of Europe's highest HIV infection rates.

The Joint United Nations Programme on HIV and AIDS (UNAIDS) estimates that Ukraine had 290,000 people living with the virus in 2014.

It reported a prevalence rate for adults aged 15 to 49 of 1.2 percent -- the same as Ethiopia's and higher than Democratic Republic of the Congo that year.

But UNAIDS also believes the infection rate has been slowing for most of the past decade thanks to state-sponsored awareness programmes.

The global agency has congratulated Ukraine "for being the first country in eastern Europe to reduce new HIV infections between 2001 and 2012."


Share this

HIV-Related Travel Restrictions on Entry, Stay and Residence. 4/3/2014



People living with HIV face stigma and discrimination on a daily basis, but no form is as disgraceful and, in some cases, inhumane as the indignity they suffer when trying to enter or stay in a country with HIV-related travel restrictions. This article briefly explores the subject of HIV-related travel restrictions with a real life example.

Harjeet, an Indian citizen, worked in Dubai, United Arab Emirates, for five years as a chauffeur. When his contract expired, he returned to India. After a while he decided to find work in Saudi Arabia where medical tests were a visa requirement. The doctor who tested him was a bit troubled by his blood test result but said that he could fix the result for a fee which Harjeet subsequently paid. Then Harjeet borrowed money from friends and family to fly to Saudi Arabia.

After his arrival it took him 20 days to find a “sponsor” who would help him convert his tourist visa into a working visa. The process again required medical tests, including a blood test. When the result of the blood test came back, Harjeet lost his sponsor and was detained in a prison cell. He appeared in court the next day where the judge ordered a second blood test to be done. The test result was the same as the first. Harjeet did not know what was happening until the administrator of the test told him that he was infected with the human immunodeficiency virus (HIV). They deported him soon after that.

Back in India, he slipped into a depression and became severely ill. His symptoms worsened when his family found out that he was HIV-positive and left him abandoned in a hospital. The staff of the HIV care centre where he lived nursed him back to health (UNAIDS, 2009).

Harjeet’s experience is not an isolated case. The Joint United Nations Programme on HIV/AIDS (UNAIDS) document, from which extracts of Harjeet’s experience was taken, contains a mere fraction of the accounts of disgrace, discrimination and loss of livelihood that people living with HIV/AIDS (PLWHA) have to face when they travel to countries with HIV-related restrictions on entry, stay and residence (UNAIDS, 2009).

These HIV-related restrictions on entry, stay and residence came into being during the 1980s when governments did their best to protect their citizens from the new disease. They passed these restrictions into law even though the World Health Organization (WHO) recommended that they not do so since it would not be beneficial to everyone involved (Wiessner & Lemmen, 2013). As a result, these restrictions fed the stigma PLWHA endured on a daily basis (UNAIDS, 2013).

The effect of restrictions to the USA
Before 2010 the United States of America (USA) was one such country. Under the Visa Waiver Program citizens of 27 countries could enter the USA without a visa for up to 90 days. However, HIV-infected travellers could not. Their passports were stamped showing that they were barred from entry. However, there was a way for PLWHA from these and other countries to enter the USA. This entailed obtaining a visa and a waiver of ineligibility, which were only granted under special circumstances (Mahto et al., 2006).

Mahto et al. (2006) reported that 85% of United Kingdom (UK)-based travellers to the USA entered the country illegally. Some even interrupted their treatment for the duration of their visit to escape detection by custom officials at airports.

Countries with travel restrictions
In 2010, the USA and China lifted their bans on entry (Wiessner & Lemmen, 2013). Countries that subsequently lifted their bans on entry, stay or residence since 2010 are: Armenia, Bulgaria, Namibia, Ukraine and Moldova. Some reports (UNAIDS, 2013) state that South Korea lifted their ban, but uncertainty remains (Wiessner & Lemmen, 2013). Table 1 below lists some countries with their various restrictions.

Table 1: Countries with HIV-related travel restrictions (Wiessner & Lemmen, 2013).

Countries which force HIV-positive foreigners to leave Countries that categorically refuse entry Countries with restrictions for short-term stays
Egypt Bahamas Bahamas
Korea (South) Papua New Guinea Egypt
Saudi Arabia Qatar Jordan
United Arab Emirates Russia Qatar
Russia Singapore Russia

Of the approximately 200 countries in the world, 66 have some form of HIV-related travel restriction. Of these, 29 were willing to deport PLWHA. HIV tests are mandatory in most of the 66 countries (Wiessner & Lemmen, 2013; Ford, 2013).

Fortunately, PLWHA do not encounter many problems for short-term (1-3 months) tourist visits when traveling to such countries. Their HIV-positive status does become a problem when they wish to study or work in those countries, which usually requires stays longer than three months (Wiessner & Lemmen, 2013).

The rationale and consequences behind the HIV-retrictions
According to Rushton (2012) and Amon and Todrys (2008), the reasons countries with HIV-related travel restrictions offer are

  1. PLWHA are a threat to public health
  2. PLWHA drain the country economically

These reasons are given despite the fact that PLWHA, especially migrant workers who bear the brunt of discrimination (Chang, 2013), make substantial contributions to the countries’ economies and cannot exercise their human right of the freedom to move (Amon & Todrys, 2008).

Amon and Todrys (2008) also state that these restrictions instead of protecting public health pose a greater danger since it fosters stigma and discrimination. They provide a false sense of security where the public strongly associates HIV with foreigners and reckless behaviour. It also becomes difficult to discuss and obtain HIV prevention and treatment measures in public.

To complicate matters, some sub-Saharan African countries have recently passed laws that negatively affect men who have sex with men and women who have sex with women in the response to HIV and AIDS. These laws foster discrimination and hold implications for PLWHA from this key population in these countries (Raghavan, 2014).

What we presented here is only a summary of the issue of HIV-related travel restrictions. As the debate rages between governments, the International AIDS Society, Deutsche AIDS-Hilfe, International Task Team on HIV-related Travel Restrictions and many other organisations, you are encouraged to visit the Global Database on HIV-related Travel Restrictions (Global Database, 2013).  There you can obtain a report (Wiessner & Lemmen, 2013) which gives specific information on the HIV-related travel restrictions of almost every country in the world including those in sub-Saharan Africa.


  • Amon, J. J. and Todrys, K. W. (2008) ‘Fear of foreigners: HIV-related restrictions on entry, stay, and residence’ Journal of the International AIDS Society 11, 8.
  • Chang, F., Prytherch, H., Nesbitt, R. C. and Wilder-Smith, A. (2013) ‘HIV-related travel restrictions: trends and country characteristics’ Global Health Action 6, 20472.
  • The global database on HIV-specific travel restrictions [Online] Accessed on 13 February 2013.
  • Joint United Nations Programme on HIV/AIDS (2009) The Impact of HIV-related restrictions on entry, stay, and residence: Personal narratives. [Online] Accessed on 14 February 2014.
  • Joint United Nations Programme on HIV/AIDS (2013), Global report: UNAIDS report on the global AIDS epidemic 2013.
  • Lazarus, J. V., Curth, N., Weait, M. and Matic, S. (2010) ‘HIV-related restrictions on entry, residence and stay in the WHO European Region: A survey’ Journal of the International AIDS Society 13:2.
  • Mahto, M., Ponnusamy, K., Schuhwerk, M., Richens, J., Lambert, N., Wilkins, E., Churchill, D. R., Miller, R. F. and Behrens, R. H. (2006) ‘Knowledge, attitudes and health outcomes in HIV-infected travellers to the USA’ HIV Medicine 7, 201-204.
  • Raghavan, S. (2014) ‘Ugandan leader signs harsh anti-gay bill, ignores warning from Obama’ The Washington Post [Online] Accessed on 27 February 2014.
  • Rushton, S. (2012) ‘The global debate over HIV-related travel restrictions: Framing and policy change’ Global Public Health 7(Supplement 2), S159-S175.
  • Taylor, R. C. R. (2012) ‘The politics of securing obrders and the identitites of disease’ Sociology of Health & Illness 35, 241-254.
  • Wiessner, P. and Lemmen, K. (2012) Quick reference guide: Entry and residence regulations for people living with HIV 2012/2013, 10th edition, Berlin: Deutsche AIDS-Hilfe e. V.

Author: Waldo Adams (BSc Hons Biochemistry)
Reviewed by:
Hendra van Zyl (MPH) and Michelle Moorhouse (MBBCh, DA)

Date: March 2014

Preferred citation
Adams, W. (2014) HIV-related travel restrictions on entry, stay and residence, AfroAIDSinfo. Issue 14 no. 3, Public (Open access).

Last updated:

4 March, 2014

Share this

Open EU HIV/AIDS Civil Society Forum letter – China is Lifting its Ban on People with HIV – European Countries Still Discriminate!

In recent months there has been an increasing momentum across the world to end entry and residency restrictions for people living with HIV.

27 May 2010

Brussels – In recent months there has been an increasing momentum across the world to end entry and residency restrictions for people living with HIV. The United States and China have been two of the countries which have acted recently to repeal their restrictions. In so doing they have demonstrated their commitment to end discrimination and to support a genuinely evidencebased and effective response to the HIV epidemic. But there are still sixteen countries across the WHO European region where such travel restrictions remain in place. The EU's Civil Society Forum called for an end to HIV-related travel restrictions in November 2008 – and we reiterate that call today. As the International AIDS Conference in Vienna approaches, these sixteen countries should comply with international standards, follow the example set by so many other countries across the globe and end all entry and travel restrictions for people living with HIV.

HIV-specific entry and residency regulations were adopted in various countries round the world in the mid 1980s at a time when the global response to the epidemic was still too often characterised by ignorance, panic and prejudice rather than by understanding of the nature of the virus and how it is spread.

After 25 years of the HIV epidemic we know that HIV is not transmitted by casual contact; we know that people with HIV can as a result of effective treatment remain well and be active members of society; that entry and residency restrictions have proved to have no impact in reducing the spread of HIV in a community but instead only reinforce the stigma, discrimination and misconceptions which drive infection.

HIV-related entry and residency restrictions are therefore discriminatory and violate international HIV and human rights standards and guidance.

The International AIDS Conference takes place in Vienna from 18 to 23 July 2010 with the theme of 'Rights here – right now'. This should be the occasion to end all HIV-related entry and residency restrictions across the whole of the WHO European region.

We therefore call on all European and Central Asian governments where these unjust and discriminatory rules remain in place to repeal these laws and regulations as soon as possible, and in advance of the International AIDS Conference. As the eyes of the world turn to Vienna in July, this will make Europe a worthy host for such an important event.

We therefore ask the Governments of the following States to revise their restrictions

-Andorra (denial of work and residence permits for PLWHA)*
-Armenia (deportations may be possible by law)
-Belarus (mandatory HIV tests targeting students)
-Cyprus (denied entry for PLWHA applying for work or study permits)
-Georgia (health checks for residency permits, unclear situation)
-Germany (Federal States of Bavaria, Saxony and New Brandenburg: mandatory HIVtests targeting migrants and asylum seekers)
-Hungary (HIV considered as a disease threatening public health, deportation possible)
-Israel (HIV-testing required for migrant workers)
-Kazakhstan (HIV-tests for stays longer than three months, deportations possible)
-Moldavia (HIV-tests for stays longer than three months, deportations possible)
-Russian Federation (HIV-tests for foreign employers and students, deportation at large scale)
-Slovak Republic (no residence permits for people with HIV)
-Tajikistan (HIV-tests for stays, exceeding 3 months, immediate deportation)
-Turkmenistan (Visa denied for HIV-positive tourists, students, employees, deportation)-
-Ukraine (HIV-tests for visitors staying longer than 3 months)
-Uzbekistan (HIV-tests for stays, exceeding 3 months, deportation possible).

The EU HIV/AIDS Civil Society Forum (CSF) is an informal advisory body established in 2005 by the European Commission to facilitate the participation of NGOs and networks, including those representing People Living with HIV/AIDS, in European policy development and implementation as well as to exchange information.

Share this