A South African at a Doctors without Borders HIV clinic. (Gianluigi Guercia/AFP/Getty)
Three groups focused on women’s rights in South Africa lodged a complaint in March with the government objecting to what they characterize as decades of systematic coerced sterilization of HIV-positive women. The Her Rights Initiative, the University of Kwazulu-Natal Health Economics and the HIV Research Division jointly claim to have collected evidence of 46 different cases since 1986.
The complaint — supported by Oxfam International — contends that these instances constitute human rights violations, and were moreover based on bad science. “There will be those who will say ‘Why do they want to have babies? Who is going to take care of those babies when they die?’” Oxfam’s Sixolie Ngcobo told the South African outlet Mail & Guardian. “But the truth is once you are on treatment and you adhere to your treatment you can live a very long life as anyone else.”
The institutional discrimination faced by these women — and their assertiveness in demanding justice for others — is reflective of the evolving dynamics of HIV stigma in South Africa. Over the past several years, investment and advocacy efforts have permeated every level of society and challenged conventional attitudes about the disease and people who have it.
After years of globally infamous AIDS denialism that exacerbated infection rates through government inaction, South Africa has been left with a significant HIV burden. The international AIDS relief organization AVERT notes that South Africa has “the highest profile HIV epidemic in the world,” with around 18% of adults carrying the virus. And yet, the past several years have seen impressive progress against the disease. Since 2008, the average life expectancy in South Africa has risen by over five years, and programs like the Presidents Emergency Plan for AIDS Relief (PEPFAR) have facilitated the construction of labs, clinics and other aspects of capacity-building. Promisingly, South Africa also hosts the most extensive antiretroviral (ARV) treatment program in the world, which enables HIV patients to live longer, healthier and more productive lives. (Taking ARV also greatly reduces the risk of mother-child transmission, making the unwanted sterilizations invoked in the aforementioned complaint all the more unnecessary.)
This revolutionary change required more than just medical interventions — it required a cultural overhaul as well. Even though international aid money has helped make ARV relatively available across the country, an HIV-positive status is still quite stigmatized. This stigma, vocally targeted by activists, exacerbates epidemics by encouraging silence, and makes resources less popular and harder to access.
Ubiquity is one antidote to stigma. Over the past few years, activists have worked hard to make HIV part of the social fabric of South Africa. “It’s amazing how the HIV movement has shifted people’s perceptions,” Dr. Amrita Daftary, a specialist in TB-HIV co-infection in South Africa, told Blouin News. “When you’re there, you see ads everywhere. You see HIV on commercials, TV segments, soap operas, the radio…people are talking about it way more than you hear about it in Canada and the U.S.”
Daftary also says that creating an inviting atmosphere in HIV clinics has helped empower patients, who see treatment portals as a social opportunity and a way to build community. At some clinics, patients even join so-called “adherence clubs,” or support groups for others who are on ARV. These social resources produce measurable results — one Doctors without Borders survey showed that members of adherence clubs were more likely to follow through with clinic visits and take ARV regularly.
Education is also a crucial aspect of combating stigma and treating HIV in South Africa. Heavy investment in ongoing initiatives like teacher training has helped raise public consciousness. Efforts have also been made to empower newly diagnosed people with comprehensive, patient-based courses on living with HIV that cover epidemiological, treatment and lifestyle issues.
Social media has also given the movement a boost, since the internet permits levels of discretion that might not be possible in small, tightly-knit communities. Physicians like Dr. Sindi van Zyl have become web-savvy and frequently field anonymous questions about HIV from patients or others. But while efforts like these have improved the landscape for successful HIV efforts throughout South Africa, too much optimism can take our eyes off the ball. As van Zyl said on her YouTube Channel, “No matter what anyone tells you, we are still living in a country — in a world, actually — with high levels of HIV stigma.” Indeed, frequent high-profile examples of gaffes in HIV care highlight the need for continued engagement with the disease: last week, one clinic came under fire for asking patients to “out” the HIV status of family members and friends.
The HIV-positive women asserting their reproductive rights reflect the move toward empowerment and agency that HIV activists have long advocated for patients. Hopefully, this will be just one of many illustrations of a changing the narrative surrounding HIV in South Africa.
