HIV/AIDS in South Africa
Summary and Keywords
Approximately 36.7 million people worldwide are living with the Human Immunodeficiency Virus (HIV). Almost 20 percent of South Africa’s adult population (aged fifteen to forty-nine) is HIV-positive, and about one in every five people living with HIV worldwide is in South Africa. The pandemic, and the political controversies it elicited, have come to define both local and global understandings of the post-apartheid nation. The history of HIV in South Africa begins in the 1980s during an era of heightened repression by the apartheid state, in which discriminatory laws and fearful public responses tapped into broader prejudices relating to race and sexuality. During the 1990s, as South Africa transitioned to democracy and as rates of HIV reached pandemic levels, partnerships were built between civil society and state actors to confront the many challenges that the HIV epidemic presented. However, from the late 1990s, corruption and the abuse of political power within the Department of Health, together with the government’s refusal to provide life-saving antiretroviral treatment (ART), ignited a new era in health advocacy. While the HIV-treatment activist movement won the struggle for public access to treatment, Jacob Zuma’s succession to President Thabo Mbeki heralded a new era of political controversies in the state’s HIV response. A copious historiography on the HIV epidemic in South Africa maps the contemporary chronology and evolution of the disease, including a focus on changing public understandings and responses
The Emergence of the HIV Epidemic
In 1980, doctors and scientists in the United States started to notice that a new illness was weakening the immune systems of men living in metropolitan areas. This disease was causing them to become sick and die from infections that were generally rare, or unlikely to be fatal, among healthy adults. In June 1981 the Center for Disease Control’s (CDC) Mortality and Morbidity Weekly Report published the first article documenting the emergence of this illness. By March 1982, the CDC had posited a viral agent for its spread, and by August 1982, the disease was given the name by which we know it today: Acquired Immune Deficiency Syndrome (AIDS).1
AIDS is the term for the condition caused by the advancement of HIV (Human Immunodeficiency Virus), which weakens the human immune system and harms the body’s ability to resist or recover from illnesses. In the four decades since its emergence, science has made rapid advancements in understanding and treating HIV. By 1983 the virus had been isolated, and its modes of transmission had been clearly established: principally transmitted via unprotected sex, from mother to child in utero or through breastfeeding, and from needle sharing in intravenous drug use. By 1984 the HIV-1 genome had been sequenced, and the HIV-1 antibody test (ELISA) developed.2
While science has made great strides in understanding the biomechanics of HIV, including how it replicates, the disease remains incurable. Antiretroviral treatment (ART) provides people living with HIV with the potential to live long and healthy lives.3 But accessing and adhering to treatment remains difficult for many, particularly in health contexts in which the continued provision of medicines and other health services is not guaranteed. Other challenges, such as the costs of transport to clinics, and the stigma associated with HIV as a marker of shame, make accessing and adhering to HIV medicines difficult for many.
At the Global Epicenter: HIV in South Africa
HIV and Apartheid
South Africa’s first cases of HIV were reported in 1982, at a time of increased militarization and repression by the apartheid state. It was only in 1985 that the Department of Health launched its first HIV/AIDS awareness campaign. The campaign’s use of coffins and skeletons conveyed nebulous, doom-laden messages about HIV, prompting panic and paranoia, rather than conveying clear messages about modes of HIV transmission.4 In 1987, the apartheid government enacted two laws that restricted the civil liberties of people living with HIV. The first, introduced by the minister of health, added AIDS to the official list of communicable diseases, giving state authorities the power to quarantine people whom they knew or suspected to be HIV-positive. The second, introduced by the minister of home affairs, declared that HIV/AIDS was a disease, “the affliction with which will render a person a prohibited person.”5 Immigration authorities were given official permissions to examine non–South African citizens who had tested HIV-positive, and to detain or deport them against their will. This law was applied principally to migrant miners, some of whom were tested coercively and, if HIV-positive, forcibly repatriated.6 Histories of coercive HIV testing and deportation demonstrate the wide reach of these practices, across an ideological spectrum of nations and regions. From the mid-1980s until the mid-1990s, Cuba quarantined all of its HIV-positive citizens, while United States federal immigration law prohibited people with HIV from entering the country’s borders until 2010.
From the early 1990s, when changes to South African legislation began to reflect the country’s transition from apartheid to democracy, these discriminatory laws were repealed.7 However, the practice of testing employees for HIV without their consent, and dismissing them if HIV-positive, persisted. Despite clinical guidelines that required the informed consent of patients prior to HIV testing, and that upheld the right of confidentiality regarding the results, violations of these rights were common in public-health facilities. (In keeping with the growing evidence base about the health benefits of earlier initiation onto ART, the South African state has moved toward a policy of “provider-initiated testing and counselling,” according to which all patients are offered HIV testing as a standard component of clinical care.8 See the section below on the national HIV Counselling and Testing campaign for more information).
In the late 1980s, the state opened AIDS Training, Information, and Counselling Centers (ATICCs) to provide HIV testing. However, these were located principally in metropolitan areas and had a limited public reach.9 Access to HIV testing and counseling services remained inaccessible for the vast majority at this time. Care and outreach programs were established, with a heavy reliance on volunteers, but state investment in these services—at the frontline of the national HIV response—remained scant. At Baragwanath, the largest hospital in South Africa, HIV infection was first identified in 1985 – among a nine-year old haemophiliac boy.10 During the late 1980s and 1990s, the presence of HIV-positive patients on the wards was growing rapidly.11 Some staff were uncomfortable about keeping a patient’s HIV-positive status confidential, believing that their relatives, and perhaps their sexual contacts, should be informed.12 Anxious about the possibility of iatrogenic transmission, some staff attended HIV-positive patients in protective surgical garb and, in some cases, refused even to enter the rooms of HIV-positive patients to serve their meals or change their bedding.13 While official state responses remained narrow in focus and were thinly resourced, the public imagination of HIV, including the experiences of growing numbers of people living with the disease—and those who sought to care for them—widened.
The stigma associated with HIV was drawn from assumptions that only particular “risk” groups were liable for transmission, even as the growing prevalence of HIV among the “general population” began to challenge these normative assumptions.
But the racial divisions and inequalities carved out by the apartheid system also reverberated within the responses of different South African publics to the emergence of HIV in the 1980s.14 Tying into the millenarian anxieties of the 1980s, it was rumored that HIV would soon become airborne.15 A statement by the South African foreign minister captured the paranoid thinking of the time: “The terrorists are now coming to us with a weapon more terrible than Marxism: AIDS.”16 Among white South Africans, fears about a deadly, casual contagion stoked a wider panic about the prospects of the losing the political power conferred by apartheid. The AIDS epidemic tapped into more fundamental fears about the loss of control associated with the coming of democracy.
Other ideas and understandings about HIV did not accord with the constructed racial delineations of apartheid, flourishing across diverse groups. Some perceived AIDS as an apartheid plot to curb population growth and sexual enjoyment. The conspiracy theory that HIV was created as a biological weapon, engineered in Western laboratories to destroy the procreative futures of black South Africans, gained currency.17 Collective experiences and memories of medical exploitation during the colonial and apartheid eras provided the historical basis for this suspicion. One result was that patients questioned the veracity of HIV tests. Healthcare workers at Baragwanath Hospital, for instance, struggled to convince patients who had tested HIV-positive that they were truly infected, and that the disease was a medical reality, rather than a macabre scare tactic or artifact of political propaganda.18
Conspiracy theories about the origin and spread of HIV revealed the sociocultural divides and prejudices incised by a long history of oppression, from colonialism to apartheid. They also revealed the ease with which HIV was designated a disease of “the Other”: carried and transmitted by racial groups, nationalities, or classes different from one’s own. In the middle of this spectrum of prejudice, however, was the perception of HIV as a “gay plague.” Both white and black South Africans blamed “homosexual promiscuity” for the spread of HIV, fueled by media depictions of gayness as a corrupting influence unleashed from the West on a mythologized African/Afrikaner nation.19 Apartheid paired its racist ideology with an obsessive focus on sexual conformity and the policing of sexual behavior. The Immorality Act (later renamed the Sexual Offences Act) criminalized not only interracial sex, but “prostitution,” “homosexual sex,” and sex with “idiots.”20 In 1985, the racial provisions of the act were changed, but its other restrictions remained. While sex across the color line became legal, sex between consenting adults of the same gender remained a crime until the Democratic Constitution of 1996 outlawed discrimination on the basis of sexual orientation.
The first recorded deaths from AIDS in 1983 were among gay white men. The South African media described the disease as the “gay plague” and paid little heed to rising HIV incidence in the “general population.”21 By March 1985, however, the press reported that black men living in Soweto had tested HIV-positive. True to the public understanding of HIV as a gay disease, and of gayness as a “Western” phenomenon, these articles described HIV-positive Sowetans as gay men who had been infected by their white sexual partners.22
From the early 1980s, a number of local gay-rights groups launched initiatives to promote HIV awareness among the gay community, and to support HIV-positive people and their partners and families. The Gay Association of South Africa (GASA) founded an AIDS Action Group as early as 1984 and, by 1987, was running primary healthcare clinics that offered testing, counseling, and post-test treatment.23 However, GASA’s exclusion of black members in previous years had created deep and lasting divides between its members and gay activists in the anti-apartheid movement. Gay activists prominent in the anti-apartheid struggle, among them Simon Nkoli, had championed their own collective responses to AIDS in the late 1980s.24 Nkoli was the founder of the Township AIDS Project, the first organization working to promote HIV awareness among gay black men and campaigning for better access to HIV care. Nkoli died of AIDS in 1998. It was his death, together with the death of Gugu Dlamini, a young AIDS activist who was murdered after disclosing her status on the radio in 1998, that spurred the founding of the Treatment Action Campaign (TAC) on December 10, 1998.
HIV and the Democratic Transition
The democratic transition in South Africa during the 1990s coincided with rapid increases in HIV infection across sub-Saharan Africa.25 In 1990, HIV prevalence among women attending South African antenatal clinics was around 0.7 percent, but by 1994 this figure had increased to 7.6 percent, reaching 22.4 percent by 1998.26 Key figures in the anti-apartheid movement grasped the dire implications of the pandemic and began to advocate for a more robust national response.27 In 1992, the National AIDS Convention of South Africa (NACOSA) was held with the intent of strengthening partnerships among civil society, healthcare workers, development agencies, and government to plan and implement a cascade of HIV interventions. In 1993, the first National AIDS Plan was published. It demonstrated the commitment of South Africa’s government-in-waiting to confront the challenges of HIV but, in retrospect, radically underestimated the resources needed to mount a broad-based HIV response that would incorporate education, outreach, and improved clinical care.28
After the jubilation of the 1994 democratic elections, in which the African National Congress (ANC) had won an overwhelming majority, the newly constituted state faced the daunting task of delivery. Decades of apartheid privation meant that many black South Africans lacked access to basic health and social services. Shortly after its landslide electoral victory, the ANC doubled the national HIV budget. However, by the mid-1990s, the task of state restructuring and the political and economic challenges facing South Africa’s fledgling democracy saw that the National AIDS Plan was pushed further down the list of political priorities.29 From the mid-1990s, the legacy of apartheid’s inequitable distribution of state resources, principally the underdevelopment of health infrastructure for the black majority, challenged the government’s implementation of its ambitiously conceived national HIV response.30
During the 1990s, the state and civil society did collaborate to drive South Africa’s national HIV response. In 1996, a consortium of health officials working within the HIV/AIDS and STD directorate, civil-society partners working on public health, and communications experts was established to devise a media and education strategy. The result was the Beyond Awareness Campaign, based on participatory communication and action-based research methods.31 However, in its principles, the campaign also acknowledged that public understanding of the basic facts about HIV would not necessarily translate into sustained behavioral change (see Figure 1).32
The Beyond Awareness Campaign incorporated a vast array of media sources from small, community-based media to the national broadcast media.33 In contrast to the scarcity of HIV-awareness strategies in South Africa during the 1980s, the 1990s saw a proliferation of these initiatives. Plays, puppet shows, posters, and billboards sprung up across the country. In the absence of public access to effective treatment for HIV, these initiatives focused largely on prevention.
Despite a range of support and educational initiatives established in partnership with civil society and healthcare workers, the state’s response to the pandemic remained inadequate. The realities of illness and death that HIV posed ran counter to the narratives of national reconstruction dominating political discourse in the post-apartheid “Rainbow Nation.” This, in combination with taboos against talking about sex, made it difficult for leading political figures, among them President Nelson Mandela, to address HIV in public.34
Subsequent debacles within the Department of Health damaged the relationship among political officials, activists, and healthcare authorities who had previously collaborated in crafting national health policy. These disputes centered on the cases of Sarafina II, a musical that was conceived as a national educational initiative, and Virodene, an experimental HIV drug that was found to be both ineffective in treating the virus and highly toxic. Both of these cases, recounted in detail in the national press and in academic accounts, exposed the misuse of public funds and political power by Health Minister Nkosazana Dlamini-Zuma, together with other senior political figures.35
More damaging still was Dlamini-Zuma’s refusal, in 1998, to implement a program for the prevention of mother-to-child transmission (PMTCT) of HIV. The state’s commitment to the provision of ART had in fact been mandated by the AIDS Plan as far back as 1993, and the burgeoning evidence base on PMTCT demonstrated its efficacy in preventing HIV transmission to infants. The fact that the health minister refused to implement this treatment program, reversing policy decisions made years before, indicated a change in the state’s commitment to the public provision of HIV treatment. Dlamini-Zuma justified the decision not to provide PMTCT programs on the basis of cost, arguing that this “did not amount to an optimal use of resources to fight the disease.”36 Yet the government’s claims about the prohibitive costs of ART were not premised on sound calculations. Research had shown that rolling out a program for the prevention of mother-to-child transmission would be cost saving for the state: providing treatment and palliative care for children with HIV was far more expensive than providing ART to prevent transmission.37
In subsequent years, Dlamini-Zuma’s successor, Health Minister Manto Tshabalala-Msimang, continued to oppose the provision of HIV treatment in South Africa. Together with President Thabo Mbeki, elected after Mandela’s resignation, the South African state refused to provide public access to ART. In statements issued by the Department of Health, senior government officials argued that treatment was unaffordable and that poor South Africans would fail to adhere to complex antiretroviral regimens. Health researchers and activists continued to collaborate to counter these claims, with a growing reliance on evidence from clinical trials, and through broad-based activist mobilization along similar lines to the anti-apartheid movement of the 1980s. From the late 1990s, South Africa lost its “rainbow glow”—the plaudits of the democratic transition—and was rebranded as the world’s AIDS capital.38 The pandemic, and the political controversies it elicited, have come to define both local and global images of the post-apartheid nation.
AIDS Denialism and the Struggle for HIV Treatment
The course of the global HIV epidemic changed in 1996 with the development of highly active ART. In those countries in which treatment was made available to the public, AIDS-related hospital admissions and deaths declined dramatically. In South Africa, however, with the world’s largest population of HIV-positive people, the government decided against establishing a national HIV-treatment program. From 1998 onward, the opposition of high-ranking political leaders to the public provision of ART became the greatest controversy to have emerged in the first decade of South African democracy. A new social movement was formed to campaign for public access to HIV treatment, and to realize the promise of South Africa’s new constitutional commitment to healthcare for all.39
From 1999, key government officials—including President Mbeki and Health Minister Tshabalala-Msimang—questioned the scientific consensus on the viral etiology of HIV, including the merits of ART. They advanced conspiratorial accounts of the origin of HIV, disputed ART’s effectiveness, and alleged that South Africa’s HIV-treatment–access movement was acting on behalf of pharmaceutical corporations to foist toxic medicines onto unwitting patients. The questioning of HIV science, the opposition to ART, and the support for unproven remedies to treat HIV was termed “AIDS denialism.”40 The politicization of HIV treatment propelled the issue to the top of the state’s agenda.
The Treatment Access Campaign (TAC), South Africa’s leading HIV advocacy organization, began lobbying for the introduction of a public program for prevention of mother-to-child transmission (PMTCT), from its inception in late 1998. In the midst of ongoing controversies around public access to HIV treatment, social mobilization around HIV testing, disclosure, and treatment advocacy took on new imperatives.41 The HIV-treatment–access coalition and its mobilization strategies, treatment-literacy campaigns, and legal struggles tell the history of among the most effective social-justice movements in the 20th century. Its successes were premised in part on its use of the courts to challenge the decisions of state actors, and on its building of broad-based partnerships.
TAC and its allies in civil society used the courts to compel the government to provide public access to ART, and in mid-2002 the Constitutional Court ordered the government to remove the restrictions against the use of ART in public PMTCT programs. In 2003, after a lengthy legal battle that pivoted on interpretations of whether the “right to health” included the public provision of ART, the HIV activist movement won a significant victory. The Constitutional Court instructed the Department of Health to roll out PMTCT, and the South African Cabinet committed the government to providing ART in the public sector. Modeling has shown that the delays in South Africa’s public provision of ART resulted in the deaths of over 330,000 people from AIDS during the Mbeki presidency—feasibly avoidable had a timely ART program been implemented.42
Despite popular mobilization in support of ART access, the responses of many district and provincial health officials remained lackluster. ART access was limited to pregnant women for PMTCT, rather than for all patients in need. To ensure that health departments fulfilled their mandate to provide HIV treatment, civil-society organizations and health researchers established the Joint Civil Society Monitoring Forum on Antiretrovirals. Copious research on the ART rollout and South Africa’s health system was undertaken, demonstrating the benefits of ART in a local context.43
In April 2000, three antiretroviral pilot programs were started by Médecins Sans Frontières as an adjunct to its primary healthcare centers in Khayelitsha, Cape Town. One purpose of these programs was to prove that poor patients could adhere well to treatment, despite its relative complexity. When published, the adherence rates of patients in the study were among the highest on record. The program highlighted the efficacy of patient education known as “treatment literacy” and the benefits of alliances between healthcare providers and community-based initiatives.44
These findings provided activists and researchers with powerful evidence in support of a public ART programs, but doubts lingered over the expansion of treatment access beyond pregnant women. In response, MSF launched an antiretroviral clinic in a rural village of Lusikisiki in the Eastern Cape, to show that the lessons learned from the flagship clinic in Khayelitsha were replicable in rural areas with scarce clinical resources. Six months after the project’s beginning, 95 percent of patients showed an undetectable viral load—demonstrating excellent adherence to medicines and associated health recovery.45
Access and Adherence to HIV Treatment after the ART Rollout
By 2005, public ART provision was hampered by systemic weaknesses within the health sector. Shortages of healthcare workers, haphazard systems of drugs supply, and weak financial oversight were among the key challenges confronting the public-health sector. A lack of standardization of treatment regimens and the late start of the ART program presented additional difficulties. Yet, in 2006, South Africa’s ART coverage was relatively low in the context of its development, demographic characteristics, and institutional capacity.46 Many patients were initiating ART at an advanced stage of HIV progression, a persistent phenomenon within South Africa’s public rollout. Despite expanding terms of ART availability, in line with global evidence about the health benefits of earlier initiation to the treatment, vast numbers of patients continued to initiate ART within the public sector at an advanced stage of HIV illness.
In 2007, a new guiding policy, the National Strategic Plan for 2007–2011, was passed, heralding a new era in South Africa’s HIV response. The plan drastically overhauled the state’s commitments to providing public testing and treatment for HIV and other sexually transmitted infections, and brought together civil society, healthcare workers, and political officials under the rubric of the South African National AIDS Council. For the first time in years, government officials and activists mutually accepted a unified policy position on the prevention and treatment of HIV.
In September 2008, Mbeki was deposed from his leadership of the ANC and ousted from the presidency. In the cabinet reshuffle that ensued, Barbara Hogan was appointed as the health minister, replacing Tshabalala-Msimang. Hogan was one of the few members of parliament to openly oppose AIDS denialism and to criticize Mbeki and Tshabalala-Msimang for opposing the ART rollout. Her appointment signaled a turn-around on the ANC’s approach to healthcare delivery within the National Department of Health. Ten years of financial mismanagement, the erosion of transparency and accountability within the Health Department, and the failure to integrate health programs at national and provincial levels had weakened the health sector significantly. In 2008, there were fewer public-health workers (including nurses) than a decade prior. This reduction was both in absolute numbers and relative to South Africa’s population.47 In the same year, fewer than half of all adults eligible for ART had initiated treatment.48
In November 2008, the Free State—one of South Africa’s nine provinces—suspended its ART program. The moratorium lasted for over four months, during which no additional patients were initiated to treatment. At this time, only about 25 percent of patients in immediate need of ART were able to gain public access in the Free State.49 During South Africa’s democratic elections in 1994, images of voters’ queues around polling stations were beamed to a global audience. The ART moratorium in the Free State revealed another kind of waiting: for access to life-saving medicines. The ART moratorium meant that those on ART waiting lists faced a lengthier delay, calculable in AIDS-related morbidity and mortality.50 At the time of its occurrence, numerous other provinces were beset by long waiting lists for ART, revealing both a high unmet demand for treatment, and the real-world impacts of financial mismanagement and poor planning within provinces on the health and survival of people living with HIV (see Figure 2).51
Under the rubric of the National Strategic Plan, activists, policy makers, and health officials pursued new collaborations, seeking to bridge the divide that had opened up during the Mbeki era. While the state’s position was to provide public access to ART, controversies regarding the prevention and treatment of HIV, and the leadership of senior health officials, continued. In December 2007, Jacob Zuma was elected the head of the ruling ANC at the party’s national conference in December 2007. His appointment was met with dismay by many health and human-rights activists owing in part to a previous rape charge brought against him by “Khwezi”—as she was referred to in the media’s coverage—in 2005. Zuma was acquitted, but in the course of the trial made a number of comments that fueled public confusion about HIV transmission. He testified, for instance, that while Khwezi was HIV-positive, he had chosen not to use a condom during sex, but had showered soon afterward. The case was heard in the Johannesburg High Court, and marked by acts of intimidation and violence by Zuma’s supporters against the gender-rights activists that gathered in support of Khwezi—including the stoning of a woman falsely identified as her.52
After the ANC won the national election of May 2009, Zuma became the third president of democratic South Africa and appointed Aaron Motsoaledi as his minister of health. One of the subsequent aims of the Zuma government has been to distance itself from Mbeki and Tshabalala Msimang’s stance on HIV through promoting evidence-based HIV interventions. But Zuma’s presidential tenure, from 2009 to the present in 2017, heralded a new era in the misappropriation of public resources and the abuse of political power for personal gain. Corruption and cronyism have impacted disastrously on the delivery of public healthcare in present-day South Africa.53 While the successes of ART provision are significant, the number of people initiated onto ART is only one marker of an effective HIV response and does not capture the number of people with good health outcomes who are retained within care.
The ART rollout is often utilized as a means of asserting the political successes of Zuma. What is elided in these accounts is Zuma’s previous participation in HIV programming while serving in the Mbeki cabinet, including as the head of the National AIDS Council. Also overlooked is Zuma’s erstwhile leadership of the Moral Regeneration Movement, which committed to “promoting a change of behavior” as a means of reducing new HIV infections.54 Zuma’s public comments about gay men and women, many of which were mentioned in the course of his rape trial, have cast further doubt on his commitment to human rights and evidence-based sexual and reproductive health. In 2015, Zuma recommended that teenage parents should be separated from their children and sent to Robben Island, revealing a deep disregard for reproductive rights.55
In South Africa, patriarchal gender norms that limit women’s sexual and reproductive agency are among the principal sociostructural drivers of HIV transmission.56 Successive household surveys by the Human Sciences Research Council have demonstrated that young women bear the greatest burden of new HIV infections.57 The 2008 Human Sciences Research Council household survey indicated that HIV prevalence among fifteen- to twenty-four-year-old males was 4 percent, while young women in the same age category had an HIV prevalence of 14 percent. In 2012, black women between twenty and thirty-four had the highest incidence of HIV infection.58
Despite the state’s commitment in policies and laws to providing comprehensive reproductive healthcare, various barriers prevent women from accessing these essential services.59 Moreover, health interventions that have prioritized ART for women as mothers have placed primary value on their reproductive capacity rather than their individual health outcomes.60 While the fight for public access to ART has won numerous gains for women, the primary focus on their health outcomes as mothers, and the related prioritization by public-health specialists, donors, and activists of PMTCT initiatives, has arguably shifted attention away from other reproductive rights. One study found that 9 percent of women on ART had become pregnant since commencing treatment.61 If the rollout of ART is to continue to improve the health outcomes of women in Southern Africa, sexual and reproductive health must be repositioned at the center of HIV-prevention and -treatment programs.
From 2010 onward, the Health Department has substantially increased the provision of HIV testing in public facilities. In 2010, the government embarked on a massive HIV Counseling and Testing (HCT) campaign, through which it aimed to test 15 million South Africans. Activists argued that testing was becoming coercive, with patients not being able to access health services without “consenting” to an HIV test.
The HCT campaign was one of the means by which the government has sought to improve the national HIV response, but the expansion of the national ART program has been its principal priority. The program’s size, which offers impressive statistics for inclusion in government speeches and reports, is often highlighted on public podiums such as the president’s “State of the Nation” address.62
Antiretrovirals are complex medications, and the recovery of health depends on steady access and adherence to treatment regimens. Side effects are relatively common, and range from the mild to the severe. In the struggle for public access to treatment, the attention of healthcare workers and activists has been focused in the past on ensuring that drugs were available, and starting patients on HIV treatment. Now that South Africa has the world’s largest cohort of patients on ART, the state must address the challenges posed by sustaining a massive public-health intervention at a time in which resources for health are declining and donor fatigue for funding HIV-treatment programs is increasing.63 Poor retention rates, and the late start of ART among many, are two indications of the momentous challenges that HIV-positive patients, and the healthcare system that serves them, continue to confront.
Discussion of the Literature
South Africa has been a hub for clinical, operational, social-sciences, and humanities research about HIV.64 Clinical trials that have changed the course of global HIV policy and programming, including the CAPRISA and HPTN052 studies, have had study sites in South Africa.65 Important research institutes in the early phase of AIDS studies, from both global and local perspectives, included hospital sites connected with South African universities, such as Baragwanath in Soweto and Helen Joseph in Johannesburg (both “teaching hospitals” for the University of the Witwatersrand), and Groote Schuur Hospital in Cape Town (connected to the University of Cape Town).
Academic writing about HIV/AIDS in South Africa constitutes a vast archive of literature in which generational shifts over four decades are perceptible. In the first texts, scholars grappled with the medical and social meanings of a new epidemic, emerging from a context of 1980s fiscal conservatism, the resurgence of the moral right, and the assertion of sexual equality by the feminist and gay-rights movements. In South Africa, the dismantling of apartheid and the medical challenges posed by AIDS were the circumstances in which this first generation of texts emerged, including Barry Schoub’s AIDS and HIV in Perspective: A Guide to Understanding the Virus and Its Consequences.66 Texts were principally medical in their focus, but some included sections about the social and political implications of HIV.67
The second generation of texts about HIV in South Africa grappled with the political circumstances of the democratic transition, and the medical realities of a burgeoning epidemic. Scholars honed in on the crisis of AIDS denialism among the highest echelons of ANC leadership, and marked the emergence of new forms of advocacy for access to HIV treatment and support. Nicoli Nattrass’s The Moral Economy of AIDS in South Africa is among the texts to have emerged from this era. A number of ethnographic studies were also published.68 These detailed case studies intervened powerfully in the evolution of South African HIV research, focusing attention to the social signification of HIV/AIDS, including imbrications of HIV with ideas about the political and moral changes that accompanied South Africa’s transition to democracy.69
In 2003 the South African government committed to the public provision of antiretroviral treatment. By the end of 2016, an estimated 3.7 million people in South Africa had been initiated onto ART—one of the most ambitious public-health interventions in history.70 In response to changes in the political response to the epidemic, a third generation of academic texts emerged. These works analyze the cultural permeations of HIV in South Africa and engage critically with the successes and failures of a broad scope of political actors—government officials, healthcare and education workers, traditional healers, artists, activists, and people living with HIV—in confronting the challenges posed by the HIV epidemic as South Africa entered its second decade of democracy.71 A greater focus on the cultural implications of HIV is evident in these texts, which explore what Bishnupriya Ghosh has termed the epidemic’s “viral zeitgeist.”72 They have focused on how the provision of ART has changed the clinical and social course of HIV, and how the prospect of life-saving treatment has given a new objective to activists, patients, researchers, and healthcare officials, who promote access and adherence to ART. Through in-depth, interdisciplinary academic inquiry, these researchers have explored how HIV and its diagnosis and treatment have been imbricated in the intimate lives of South Africans.73 The centrality of context, of the significance to South Africa’s particular historical, socio-structural, and epidemiological conditions, are among the core contentions of this archive (see Figure 3).74
As in the global domain of HIV research, the body of literature in South Africa has stoked a disciplinary debate about the best means of understanding and responding to the HIV epidemic. In the contemporary era of “test- and treat,” in which key health authorities and policy makers support universal HIV testing and immediate initiation onto ART, scholars argue that medical framings of HIV have become hegemonic, and that the social dimension of HIV interventions—including HIV testing, condom use, and treatment taking—have been elided. These texts have also begun to question the meanings and manifestations of “pharmacosalvation,” considering how and why HIV transmission and mortality persist despite the promise of “viral load undetectable” that treatment portends. In these writings, scholars grapple with the challenges of adherence to antiretroviral treatment—the use of medical regimens, previously classified as tertiary care, as the clinical crux of an ever-expanding primary-health program.75
Despite the failure of scientific medicine to provide the two solutions to HIV—prevention (vaccine) and cure—scientific medicine has asserted epistemological preeminence in the HIV response, gaining ascendency over socio-behavioral interventions as the best means of epidemic response. Interventions with an avowedly social dimension—condom use, HIV testing, and indeed antiretroviral treatment—have been recast as medical.76 Yet a growing literature, also based on copious primary research in South Africa, highlights the importance of “comprehensive” care and prevention initiatives—which seek to promote health and well-being while also reducing morbidity and mortality.
Much of the literature on HIV in South Africa challenges traditional taxonomies of knowledge through incorporating elements of history, anthropology, the life sciences, bioethics, sociology, and other forms of academic inquiry. Authors have combined qualitative and quantitative research to triangulate their findings, and include different modes of understanding and analysis in their research. This fusion of sociology, epidemiology, geography, political economy, and participatory research has become a hallmark of HIV social sciences in South Africa. A focus on community-level factors, the social experiences and realities of the “majority world,”77 are a common feature. The associations, intersections, and cross-overs among social experiences, the lived realities of the global south, and their influence on HIV epidemiology are central concerns of this literature on HIV.78
The HIV-research domain in South Africa continues to wrestle with the meaning and particularity of its context—as the global epicenter of the HIV epidemic. Three decades after the first cases of HIV were identified in South Africa, the state has among the largest total populations of HIV-positive people. Approximately 6.1 million are living with the virus in South Africa.79 By 1997, halfway through the first decade of democracy, 2.9 million South Africans were living with HIV, with the death rate exceeding 360,000 per annum. Between 1994 and 2009, life expectancy in South Africa was reduced by almost twenty years, largely because of the rise in HIV-related mortality.80 It was only in 2013, in large part due to the impact of ART on halting AIDS-related deaths, that this precipitous decline began to abate. The pandemic, and the political controversies it elicited, have come to define both local and global understandings of the post-apartheid nation.
The historiography of HIV/AIDS in South Africa is vast, and this chapter has benefited from the work of many. In particular, I thank Chris Saunders and two anonymous reviewers for their comments on an earlier version of this chapter, and am grateful to William Beinart, Lucie Cluver, Robert Morrell and Nicoli Nattrass for their critical insights.
South Africa’s HIV-research domain provides copious and diverse archives, and rich potential for historical analysis. For instance, while academic journals and monographs are traditionally classified as “secondary sources,” studies of these sources may also approach these texts as “primary”—original documents produced within particular moments and reflective of particular historical conditions. The South African Medical Journal, for instance, provides an extensive archive of clinical and epidemiological histories of the epidemic, including research studies conducted by doctors and public-health officials, and commentaries by activists, civil-society organizations, and journalists.
Journals such as the African Journal of AIDS Research has cultivated a dedicated, regional focus on HIV, while other “area studies” journals, such as African Affairs and the Journal of Southern African Studies, have published an abundance of interdisciplinary research on HIV, while showcasing key debates in the production and dissemination of academic knowledge about the epidemic. Successive household surveys, conducted by the Human Sciences Research Council in partnership with South Africa’s Medical Research Council and other consortia, also provide a substantial source base about HIV in South Africa, including a focus on gender and generation as socio-structural determinants of HIV and the particular vulnerabilities of population groups.
A number of research institutes in South Africa have developed a primary focus on HIV, such as the Centre for Sexualities, AIDS and Gender at the University of Pretoria and the AIDS and Society Research Unit at the University of Cape Town. The University of Cape Town hosts a visual archive of the HIV epidemic—including copious collections of video and photography. New approaches to what constitutes primary “evidence” in the HIV epidemic—with a greater focus on visual, oral, performative, and participatory sources—will see the emergence and analysis of a new breadth of sources in the years to come.
Abdool Karim, Salim S., and Quarraisha Abdool Karim, eds. HIV/AIDS in South Africa. 2d ed. Cambridge, UK: Cambridge University Press, 2010.Find this resource:
Barnett, Tony, and Alan Whiteside. AIDS in the Twenty-First Century: Disease and Globalisation. New York: Palgrave, 2000.Find this resource:
Cameron, Edwin. Witness to AIDS. Cape Town: Tafelberg, 2005.Find this resource:
Campbell, Catherine. “Migrancy, Masculine Identities and AIDS: The Psychosocial Context of HIV Transmission on the South African Gold Mines.” Social Science and Medicine 45, no. 2 (2002): 273–281.Find this resource:
Coovadia, Hoosen, Rachel Jewkes, Peter Barron, David Sanders, and Diane McIntyre. “The Health and Health System of South Africa: Historical Roots of Current Public Health Challenges.” The Lancet 374, no. 9692 (2009): 831.Find this resource:
Green, Lesley J. F. “Beyond South Africa’s ‘Indigenous Knowledge – Science’ Wars.” South African Journal of Science 108, no. 7/8 (2012).Find this resource:
Iliffe, John. The African AIDS Epidemic: A History. Oxford: James Currey, 2006.Find this resource:
Nattrass, Nicoli. Mortal Combat: AIDS Denialism and the Struggle for Antiretrovirals in South Africa. Pietermaritzburg: University of KwaZulu-Natal Press, 2007.Find this resource:
Phillips, Howard. “HIV/AIDS in the Context of South Africa’s Epidemic History.” In AIDS in South Africa: The Social Expression of a Pandemic, edited by Kyle D. Kauffman and David L. Lindauer, 31–47. Basingstoke, UK: Macmillan, 2004.Find this resource:
Simelela, Nono, and Francois Venter. “A Brief History of South Africa’s Response to AIDS.” South African Medical Journal 104, no. 3 (2014): 249–251.Find this resource:
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(22.) Gevisser, “A Different Fight for Freedom,” 50.
(23.) Gevisser, “A Different Fight for Freedom,” 39.
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(26.) Republic of South Africa, National HIV and Syphilis Antenatal Sero-Prevalence Survey in South Africa (Pretoria: National Department of Health, 2006), 13.
(27.) Nicoli Nattrass, Mortal Combat: AIDS Denialism and the Struggle for Antiretrovirals in South Africa (Pietermaritzburg: University of KwaZulu-Natal Press, 2007), 39.
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(29.) Schneider, Helen, “On the Fault-Line: The Politics of AIDS Policy in Contemporary South Africa,” African Studies 61, no. 1 (2002): 146.
(30.) Diane McIntyre, Gerald Bloom, Jane Doherty, and Prem Brijlal, Health Expenditure and Finance in South Africa (Durban, South Africa: Health Systems Trust and the World Bank, 2005); and Hoosen Coovadia, Rachel Jewkes, Peter Barron, David Sanders, and Diane McIntyre, “The Health and Health System of South Africa: Historical Roots of Current Public Health Challenges,” The Lancet 374, no. 9692 (2009): 831.
(31.) Keyan Tomaselli, “Sham Reasoning and Pseudo-Science: Myths and Mediatisation of HIV/AIDS in South Africa,” in Development and Public Health Communication, eds. Keyan Tomaselli and Colin Chasi (Cape Town: Pearson Education, 2011), 38; and Warren Parker, “The Development of Community-Based Media for AIDS Education and Prevention in South Africa: Towards an Action-Based Participatory Research Model” (MA thesis, University of Natal, Durban, 1994), 63.
(32.) Warren Parker, “South Africa’s Beyond Awareness Campaign: Tools for Action,” Poster presented at the 13th International AIDS Conference, Durban, July 9–14, 2000.
(33.) K. Hurt, “Tools for Action: An Evaluation of the Beyond Awareness Campaign’s AIDS Action Office,” Evaluation report, Beyond Awareness Campaign (Pretoria: South Africa Department of Health, 2000).
(34.) Eleanor Preston-Whyte, “Contexts of Vulnerability: Sex, Secrecy and HIV/AIDS,” African Journal of AIDS Research 2, no. 2 (2003): 89–94, esp. 90.
(35.) Nattrass, Mortal Combat, 39; and Hodes, Broadcasting the Pandemic.
(37.) Jolene Skordis and Nicoli Nattrass, “Paying to Waste Lives: The Cost-Effectiveness of Reducing Mother-to-Child Transmission of HIV/AIDS in South Africa,” Journal of Health Economics 21, no. 5 (2002): 405–421; and Nicoli Nattrass, The Moral Economy of AIDS in South Africa (Cambridge, UK: Cambridge University Press, 2004).
(38.) Daniel Herwitz, Heritage, Culture, and Politics in the Postcolony (New York: Columbia University Press), 88.
(39.) South African National AIDS Council, “HIV and AIDS and STI Strategic Plan for South Africa (NSP), 2007–2011” (Republic of South Africa, Department of Health, Pretoria, 2007).
(40.) Edwin Cameron, Witness to AIDS (Cape Town: Tafelberg, 2005), 103–122; and Pieter Fourie and Melissa Meyer, The Politics of AIDS Denialism: South Africa’s Failure to Respond (Farnham, UK: Ashgate, 2010).
(41.) Christopher J. Colvin, “Evidence and AIDS Activism: HIV Scale-Up and the Contemporary Politics of Knowledge in Global Public Health,” Global Public Health, 9, no. 1–2 (2014): 57–72.
(42.) Nicoli Nattrass, “AIDS and the Scientific Governance of Medicine in Post-Apartheid South Africa,” African Affairs 107, no. 427 (2008): 157–176; and Pride Chigwedere, George Seage, Sofia Gruskin, Tun-Hou Lee, and Max Essex, “Estimating the Lost Benefits of Antiretroviral Drug Use in South Africa,” Journal of Acquired Immune Deficiency Syndrome 49, no. 4 (2008): 410–415.
(43.) Inge Peterse and Leslie P. Swartz, “Primary Health Care in the Era of HIV/AIDS: Some Implications for Health Systems Reform,” Social Science and Medicine 55 (2002): 1005–1013; and Katherina Kober and Wim Van Damme, “Public Sector Nurses in Swaziland: Can the Downturn Be Reversed?” Human Resources for Health 4, no. 13 (2006); Tanya Doherty Mickey Chopra, Lungiswa Nkonki, Debra Jackson, Ted Greiner, “Effect of the HIV Epidemic on Infant Feeding in South Africa: “When They See Me Coming with the Tins They Laugh at Me,” Bulletin of World Health Organization 84 (2006): 90–96; Mickey Chopra and Neil Ford, “Scaling Up Health Promotion Interventions in the Era of HIV/AIDS: Challenges for a Rights Based Approach,” Health Promotion International 20, no. 4 (2005): 383–390; Helen Schneider, Duane Blaauw, Lucy Gilson, Nzapfurundi Chabikuli, and Jane Goudge, “Health Systems and Access to Antiretroviral Drugs for HIV in Southern Africa: Service Delivery and Human Resources Challenges,” Reproductive Health Matters 14, no. 27 (2006): 12–23; and Bisola Ojikutu, “The Realities of Antiretroviral Therapy Rollout: Overcoming Challenges to Successful Programmatic Implementation,” The Journal of Infectious Diseases 196 (2007): S445–S448.
(44.) Rebecca Hodes and Trude Holm Naimak, “Piloting Antiretroviral Therapy in South Africa: The Role of Partnerships in the Western Cape’s Provincial Roll-Out,” African Journal of AIDS Research 10, no. 4 (2011): 415–425.
(45.) Belinda Beresford, “Reflections and Lessons from Frontline Treatment Providers,” Development Update, 5, no. 3 (2004): 265–291.
(46.) Nicoli Nattrass, “Are Country Reputations for Good and Bad AIDS Leadership Deserved? An Exploratory Quantitative Analysis,” Journal of Public Health 30, no. 4 (2008): 398–406.
(47.) Dingie Van Rensburg, Francois Steyn, Helen Schneider, and Les Loffstadt, “Human Resource Development and Antiretroviral Treatment in Free State Province,” Human Resources for Health 6, no. 15 (2008).
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(50.) Rebecca Hodes and Anna Grimsrud, “The Antiretroviral Moratorium in the Free State Province of South Africa: Contributing Factors and Implications,” Centre for Social Science Research, Working Paper No. 290 (Cape Town: AIDS and Society Research Unit, 2011).
(51.) Rebecca Hodes, Broadcasting the Pandemic; Lara R. Fairall et al., “Effectiveness of Antiretroviral Treatment in a South African Program,” Archives of Internal Medicine 168, no. 1 (2008): 86–93; and Nathan Ford, Edward Mills, and Alexandra Calmy, “Rationing Antiretroviral Therapy in Africa: Treating Too Few, Too Late,” New England Journal of Medicine 360, no. 18 (2009): 1808–1810.
(53.) Laetitia C. Rispel, Pieter de Jager, and Sharon Fonn, “Exploring Corruption in the South African Health Sector,” Health Policy and Planning 31, no. 2 (2016): 239–249.
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(56.) Republic of South Africa, Let Our Actions Count: South Africa’s National Strategic Plan for HIV, TB and STIs 2017–2022 (Pretoria, South Africa, 2017), 27; Diane Cooper et al., “Coming of Age? Women’s Sexual and Reproductive Health after Twenty-One Years of Democracy in South Africa,” Reproductive Health Matters 24, no. 48 (2016): 79–89, esp. 83.
(57.) Olive Shisana et al., South African National HIV Prevalence, Incidence, Behaviour and Communication Survey 2008: A Turning Tide among Teenagers? (Cape Town: HSRC Press, 2008), 36; and Olive Shisana et al., South African National HIV Prevalence, Incidence and Behaviour Survey 2012 (Cape Town: HSRC Press, 2014).
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(59.) Leslie London, Phyllis Orner, and Landon Myer, “‘Even If You’re Positive, You Still Have Rights because You Are a Person’: Human Rights and the Reproductive Choice of HIV-Positive Persons,” Developing World Bioethics 8, no. 1 (2008): 14.
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(61.) Diane Cooper et al., “Fertility Intentions and Reproductive Health Care Needs of People Living with HIV in Cape Town, South Africa: Implications for Integrating Reproductive Health and HIV Care Services,” AIDS and Behaviour 13 (2009): S38–S46; S41.
(62.) Jacob Zuma, “Address on the Opening of the South African Parliament: Implications for Integrating Reproductive State of the Nation Address,” Joint Sitting of Parliament, Cape Town, 13 February 2014. South African History Online hosts an archive of these addresses.
(63.) Nicoli Nattrass, Rebecca Hodes, and Lucie Cluver, “Changing Donor Funding and the Challenges of Integrated HIV Treatment,” AMA Journal of Ethics 18 (2016): 681–690.
(64.) Raewyn Connell, Rebecca Pearse, Fran Collyer, João Maia, and Robert Morrell, “Re-Making the Global Economy of Knowledge: Do New Fields of Research Change the Structure of North–South Relations?” The British Journal of Sociology (August 2017). Available online: S1–20, esp. 17; and Rebecca Hodes and Robert Morell, “South African Social Science in the Global HIV/AIDS Knowledge Domain,” CSSR, Working Paper No. 382 (University of Cape Town, July 2016).
(65.) The inclusion of South African studies in the clinical guidelines issued by the World Health Organization is one way to track their impact. See, for instance, World Health Organization (WHO) (2013) Consolidated Guidelines on the Use of Antiretroviral (ART) Drugs for Treating and Preventing HIV Infection and Recommendations for a Public Health Approach. For further details of clinical and epidemiological research in South Africa that has had a global impact, see, for instance, Lara Fairall et al., “Task Shifting Of Antiretroviral Treatment From Doctors To Primary-Care Nurses In South Africa (STRETCH): A Pragmatic, Parallel, Cluster-Randomised Trial,” Lancet 380, no. 9845 (2012): 889–898; Morna Cornell et al., “Monitoring the South African National Antiretroviral Treatment Programme, 2003–2007: The IeDEA Southern Africa Collaboration,” South African Medical Journal 99, no. 9 (2009): 653–660; and Mary-Ann Davies, et al., “Paediatric Antiretroviral Treatment Programmes in sub-Saharan Africa: A Review of the Medical Literature,” African Journal of AIDS Research 8, no. 3 (2009): 320–338.
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(70.) Republic of South Africa (2017). Let Our Actions Count: South Africa’s National Strategic Plan for HIV, TB and STIs 2017–2022. (Pretoria, South Africa), xiii.
(71.) Robert Morrell, “Silence, Sexuality and HIV/AIDS.”
(72.) Bishnupriya Gosh, “Virus: An Introduction,” in A Companion to Contemporary Documentary Film, eds. Alexandra Juhasz and Alisa Lebow (Oxford: Wiley Blackwell, 2015), 273–279.
(73.) Nicoli Nattrass, The AIDS Conspiracy, 2012; Patricia C. Henderson, AIDS, Intimacy and Care in Rural KwaZulu-Natal: A Kinship of Bones (Amsterdam: University of Amsterdam Press, 2011); Kylie Thomas, Impossible Mourning: HIV/AIDS and Visuality after Apartheid (Johannesburg: Wits University Press, 2014); Annabelle Wienand, “Visual Approaches to HIV Literacy in South Africa” in The Culture of AIDS in Africa: Hope and Healing through Music and the Arts, eds. Gregory Barz and Judah M. Cohen, 94–110 (Oxford: Oxford University Press 2011); and Elona Toska, Lucie Cluver, Rebecca Hodes, and Khameer K. Kidia, “Sex and Secrecy: How HIV-Status Disclosure Affects Safe Sex among HIV-Positive Adolescents,” AIDS Care, 27, no. 1 (2015): 47–58.
(74.) Brian King, States of Disease: Political Environments and Human Health (Berkeley: University of California Press, 2017); Carla Tsampiras, “Temporal Dissonance: South African Historians and the ‘Post-AIDS’ Dilemma,” Journal of the Medical Humanities (2017). Available online.
(75.) Kiran Pienaar, Politics in the Making of HIV/AIDS in South Africa (London: Palgrave Macmillan, 2016), 14; Jonathan Stadler, Fiona Scorgie, Ariane van der Straten, and Erik Saethrie, “Adherence and the Lie in a HIV Prevention Clinical Trial,” Medical Anthropology 35, no. 6 (2016): 503–516; Beth Vale et al., “Bureaucracies of Blood and Belonging: Documents, HIV-Positive Youth, and the State in South Africa,” Development and Change 48, no. 6 (2017): 1287–1309.
(76.) Pienaar, Politics in the Making, 14.
(77.) Jean J. Comaroff and John L. Comaroff, Theory from the South or, How Euro-America Is Evolving toward Africa (London: Paradigm, 2012).
(78.) Catherine Campbell, “Letting Them Die”: Why HIV/AIDS Intervention Programmes Fail (Bloomington: Indiana University Press, 2003).
(79.) Joint United Nations Programme on HIV/AIDS (UNAIDS), “Global Report: UNAIDS Report on the Global AIDS Epidemic 2013.” Geneva, 2013.
(80.) Mickey Chopra et al., “Achieving the Health Millennium Development Goals for South Africa: Challenges and Priorities,” The Lancet 374 (2009): 1023–1031; and Debbie Bradshaw et al., “Unabated Rise in Number of Adult Deaths in South Africa,” South African Medical Journal 94, no. 4 (2004): 278–279.