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
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)
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.