A Look at the Graying of HIV. 4/6/2016
Published by HERALDTRIBUNE
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.”