Ending HIV While Isolation and Stigma Endure #WorldAIDSDay

World AIDS Day is a reminder that despite improvements in the management of HIV challenges remain. This is reflected in this year’s World AIDS Day declaration: “You Helped Fight HIV: Now Let’s End It,” which asserts that ending HIV will occur through the elimination of isolation, stigma, and transmission. Yet while this is a global epidemic, these factors are unevenly experienced and locally produced. This is the case in South Africa, where I have conducted extensive research for nearly two decades. South Africa’s response offers important lessons for ending HIV in a country where the epidemic remains distinctly South African.

Battling isolation is critical, because it often leads to silence around the disease that keeps people from seeking treatment. When I began conducting research in rural communities in 2000, people were reluctant to discuss HIV. I was told that family members or others were “sick” but the underlying cause of death went unmentioned. As part of this work, my research team conducted a structured survey of 478 households to understand broad social and economic patterns less than a decade after the first fully representative democratic elections in the country’s history. While there were deaths over the previous five years, only one of the households interviewed reported AIDS as the cause of mortality. This led one governmental official to wryly remark to me that “In South Africa, no one dies of AIDS.”

Silencing occurred not only within rural communities but also by the South African government. Key officials resisted the provision of antiretroviral drugs and questioned the link between HIV and AIDS. Arguments that infectious disease was caused by socio-economic poverty, which was simmering after decades of colonial and apartheid white-minority rule, were emphasized by governmental representatives while HIV activists questioned whether this was intended to delay desperately needed public health programs.

As I detail in my book States of Disease: Political Environments and Human Health, changes in governmental leadership and responses in the late 2000s began to shift how the epidemic was understood. My current research is demonstrating how South African households and communities manage HIV through their engagements with social and environmental systems. Unlike my earlier encounters, residents share that people are “sick,” but now emphasize that they “get better,” so long as they are tested and put on antiretroviral therapy. Community-level home-based care organizations provide resources for community members, and there is greater transparency about the factors shaping HIV transmission and treatment.

As a result of these efforts, the isolation many HIV/AIDS patients suffered has been reduced as space has opened to talk about HIV. Some HIV-positive people emphasize that they present themselves as examples for others. One woman, whom I will call Mafuane, explained to me that people are more open than in the past now they see that death is not inevitable. She credits the drugs for contributing to this shift, noting that her sister had tested positive for HIV and was put on antiretroviral therapy. After dealing with side effects for several weeks her sister’s health improved. These developments were unimaginable when I first started my work in South Africa in the late 1990s.

Despite these positive shifts the reality is that transmission rates are uneven and this presents ongoing challenges. Women are more likely to be infected with HIV than men, which is the result of a number of social factors, including unequal power and intra-household dynamics. As a result, providing mass contraception and abstinence education will do little to reduce sexually transmitted diseases if women have limited power in negotiating sexual decision-making. More than twenty years after its democratic elections, South Africa remains a highly unequal country. The expanded unemployment rate is above 40 percent in some rural areas, and youth unemployment in rural South Africa is 82 percent compared to 58 percent in urban formal areas. Economic vulnerabilities due to high unemployment rates and insecure land tenure systems contribute to vulnerabilities for HIV transmission. Dealing with these local realities is critical to truly end HIV.

Stigmas vary as well. Stories are shared of women in the community who were blamed for bringing HIV into the household. In one case, a woman was kicked out of the home and forced to move elsewhere, while her husband walked around with visible signs of the disease. In other conversations, I am told that women are more likely to get tested for HIV, and more likely to adhere to antiretroviral therapy if they test positive. Mafuane made this same point to me, noting that it is the women who are willing to get tested and take antiretroviral drugs. By comparison, men are “stupid” and less willing to care for themselves. HIV is the same virus as elsewhere, but these dynamics make the epidemic distinctly South African.

World AIDS Day rightfully proclaims that HIV will be ended through the elimination of isolation, stigma, and transmission. Yet individual experiences with HIV demonstrate that ending the disease requires addressing local dynamics, in addition to understanding how the disease remains unevenly experienced within populations.

Brian King is Associate Professor in the Department of Geography at the Pennsylvania State University. He is the author of States of Disease: Political Environments and Human Health that was published by the University of California Press in 2017.