Curr HIV/AIDS Rep (2015) 12:256–261 DOI 10.1007/s11904-015-0259-7

THE GLOBAL EPIDEMIC (SH VERMUND, SECTION EDITOR)

A Political and Social History of HIV in South Africa Nono Simelela 1 & W. D. Francois Venter 2 & Yogan Pillay 3 & Peter Barron 3,4

Published online: 1 May 2015 # Springer Science+Business Media New York 2015

Abstract For the past 25 years, South Africa has had to deal with the inexorable and monumental rise of HIV. From one or two isolated cases, in the late 1980s, South Africa now has an estimated 6.4 million people infected with HIV, with high rates of concomitant tuberculosis, which will profoundly affect the country for decades to come. For nearly 10 years, the South African government’s response to the HIV epidemic was described as denialist, which was estimated to have resulted in the deaths of 330,000 people because lifesaving antiretroviral therapy (ART) was not provided (Chigwedere et al. J Acquir Immune Defic Syndr. 49:410–15, 2008; This article is part of the Topical Collection on The Global Epidemic Electronic supplementary material The online version of this article (doi:10.1007/s11904-015-0259-7) contains supplementary material, which is available to authorized users. * Peter Barron [email protected] Nono Simelela [email protected] W. D. Francois Venter [email protected] Yogan Pillay [email protected]

Heywood 2004). However, the story of the HIV and AIDS response in South Africa over the past 5 years is one of great progress after almost a decade of complex and tragic denialism that united civil society in a way not seen since the opposition to apartheid. Today, South Africa can boast of close to 3 million people on ART, by far the largest number in the world. Prevention efforts appear to be yielding results but there continues to be large numbers of new infections, with a profound peak in incidence in young women aged 15 to 24 years. In addition, infections occur across the gender spectrum in older age groups. As a result of the massive increase in access to ART after 2004 and particularly after 2008 as political will towards the HIV ART programme improved, there has been a marked increase in life expectancy, from 56 to 61 years in the period 2009–2012 alone; the aggressive expansion of the prevention of mother to child transmission (PMTCT) to HIV-positive pregnant women has been accompanied by dramatic decrease in HIV transmission to infants; and a 25 % decrease in child and infant mortality rates in the period 2009–2012. This progress in access is significantly due to a civil society movement that was prepared to pose a rightsbased challenge to a governing party in denial and to brave health officials, politicians and clinicians working in a hostile system to bring about change. Keywords HIV . South Africa . Health system

1

The Presidency, Union Buildings, Government Avenue, Pretoria, South Africa

2

Wits Reproductive Health and HIV Institute (WRHI), Faculty of Health Sciences, University of the Witwatersrand, Hugh Solomon Building Klein & Esselen St., Johannesburg, South Africa

3

National Department of Health, Civitas Building, Strubens Road, Pretoria, South Africa

4

School of Public Health, University of the Witwatersrand, Johannesburg, South Africa

Introduction South Africa (SA) is home to the largest concentration of people living with HIV anywhere in the world. Of all the HIV positive people in the world, nearly one fifth live in SA. Data from a large national household survey conducted by the Human Sciences Research Council showed that in

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2012, 12.3 % of the total population and 19.6 % of all adults had HIV [3]. This translates into 6.4 million people who were HIV positive. Although initially in the 1980s, the HIV epidemic in South Africa lagged behind the rest of Africa, where countries like Uganda were experiencing unprecedented mortality, the rise in numbers was dramatic in the 1990s. Figure 1 shows the inexorable rise in the HIV prevalence, as measured in the annual antenatal sero-prevalence surveys in public sector facilities. Antenatal HIV prevalence rose from 0.7 % in 1990 to 29.5 % in 2004 after which it stabilised [4]. SA was only one of a handful of countries that consistently conducted annual antenatal HIV surveys, which predated the period of denialism, and has been continued since. In addition, a robust analysis of death certificate data is periodically performed by the independent Statistics South Africa. Also, the Human Sciences Research Council does actual extensive populationbased seroprevalence monitoring. This allows for extensive analysis of epidemiological trends and data triangulation for accuracy. The first AIDS deaths in SA occurred in late December 1981 and January 1982, with very limited subsequent attention to the epidemic over the next decade, which was largely confined to homosexual men, haemophiliacs and foreign African mineworkers [5, 6]. With limited information nationally and globally at the time, the government was unsure how best to respond. In 1994, a new democracy brought optimism regarding the future of the country and the new administration had to redesign all aspects of government and to dismantle the racial and socioeconomic inequalities institutionalised under apartheid. In competition with these more pressing immediate concerns, the HIV epidemic was not an issue of major concern and thus received very limited attention in the initial flurry of setting up a democratic government and dealing with racial fragmentation and inequities of the past. Fig. 1 HIV prevalence trends among antenatal women, 1990 to 2012. Source: South African National Department of Health, 2013 (3). This figure shows the virtual annual doubling of HIV sero-prevalence in antenatal attendees between 1990 and 1998; thereafter, a tapering in increase to 2005 after which the prevalence rates plateaued and stabilised

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Civil society, with significantly participation of the soon to be ruling party, the African National Congress, created a National Advisory Group (NACOSA) to lobby for and ultimately to draft a national AIDS Plan. This plan was accepted by the new government 3 months into their term of office in 1994 [3]. Whilst the Mandela government was busy dismantling the legacy of apartheid, HIV prevalence rose from 4 % in 1994 to 22.8 % by 1998 [2]. The National AIDS Plan focussed solely on prevention interventions known at that time, but its implementation was inadequate to stem the tide of new infections. Tragically, the period from 1998 till 2008 was to prove a testing period for SA as the full extent of the HIV epidemic’s health impact became apparent, in the face of increasing denialism from President Thabo Mbeki [7].

The Beginning of a Prevention and Treatment Response Given the limited knowledge and availability of prevention strategies, the mainstay of the response during the 1980s and 1990s was the provision of condoms and a ‘safe-sex’ education strategy that was hampered by stigma, fear and other behavioural and social factors. Efforts to communicate were hampered by some of the controversies around the Sarafina II play [8] and the Virodene scandal [3]. Sarafina was an AIDS communication strategy in the form of theatre, which while well-intentioned, cut corners in the procurement process and became a political football. Virodene was a controversial AIDS drug developed in South Africa, but rejected by the scientific community. Controversy surrounded the research procedures, political interference and the safety and efficacy of the drug itself. In the midst of these controversies, there were efforts to mitigate the impact of the epidemic. These included a strategy for home-based care for the large number

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of people who had advanced AIDS and strategies for affected children. The second phase of the prevention response followed with trials examining the effectiveness of ARVs delivered to pregnant women and their neonates, a programme called the prevention of mother to child transmission (PMTCT) of HIV. This ushered in an age of heightened conflict [9, 10]. The SA Government declared that a phased piloting approach was needed, and that Bthere was enough scientific evidence confirming the efficacy of ARVs in reducing the transmission of HIV from mother to child that it should be implemented within the region immediately, but the operational challenges of actually introducing PMTCT needed to be assessed in both rural and urban settings^. This phased approach was seen as an attempt to hamper expanding rapid access to effective PMTCT. The decision came at the height of civil society’s clash with President Thabo Mbeki’s administration, over widely criticised denialism on the issue of HIV/AIDS, including denial of a causal link between HIV and AIDS. The PMTCT intervention, civil society argued, was compelling, affordable and simple enough to implement, and that opposition was more a symptom of AIDS denialism than a legitimate operational concern. Civil society challenged the policy in the High Court, arguing that the refusal to provide PMTCT violated the Constitution. The Pretoria High Court agreed and ruled that B[a] countrywide MTCT programme is an ineluctable obligation of the state^. The Minister of Health appealed this ruling directly to the Constitutional Court, claiming that an appeal was necessary to B[clarify] a constitutional and jurisdictional matter which, if left vague, could throw executive policy making into disarray and create confusion about the principle of the separation of powers, which is a cornerstone of our democracy^ [8]. During the appeal (January 2002), a report commissioned by the national health department stated categorically: BThere are no good reasons for delaying a phased expansion of PMTCT services in all provinces^ and recommended that BNVP can and should be provided immediately^ [11]. Two provinces, Gauteng and KwaZulu-Natal, broke ranks with Minister of Health, Dr. BManto^ Tshabalala-Msimang, and announced decisions to expand their PMTCT pilot programmes [12]. Even though the Gauteng Premier received a public rebuke from the Minister of Health and gave the appearance of backing down, it was soon announced that PMTCT was available at 70 % of public health facilities in Gauteng. The minister lost the appeal in a historic judgement that remains unprecedented in its criticism of the South African government [8]. In the face of sustained national and international criticism, as well as internal dissent, and as countries in southern Africa began announcing ART programmes, a Cabinet statement released in April 2002 Breiterated government’s commitment to

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the HIV & AIDS and STI Strategic Plan for South Africa, 2000 – 2005^ and affirmed that Bgovernment’s starting point is based on the premise that HIV causes AIDS^ [13]. This was a partial rebuttal of the position of President Mbeki, whose critique cast doubt on the association of HIV with the autoimmune-deficiency syndrome. The same Cabinet meeting called on the Health Department to develop a rollout plan for PMTCT and, unexpectedly, to prepare Ba protocol for a comprehensive package of care for survivors of sexual assault, including post-exposure prophylaxis with antiretroviral drugs^ which would, for the first time, make HIV prophylaxis available to survivors of sexual assault in public health facilities across all nine provinces of the country.

The Development of an ART Programme Later in April 2002, the SA government established a Joint Health and Treasury Task Team to propose options for expanding the HIV treatment response beyond PMTCT and post-exposure prophylaxis. Clinicians in the joint task team quietly developed HIV treatment protocols that included ART for adults and children. Assistance from the Clinton Foundation and international agencies, including donors such as the US President’s Emergency Plan for AIDS Relief (PEPFAR), allowed this work to progress rapidly. In August 2003, Cabinet received the joint Health and Treasury Task Team report [14]. The Cabinet meeting reaffirmed government’s position on the causal link between HIV and AIDS and instructed the Department of Health to develop Bas a matter of urgency^ a detailed operational plan for a nationwide antiretroviral treatment programme [15]. In November 2003, the Operational Plan for Comprehensive HIV and AIDS Care, Management and Treatment for South Africa [16] was presented to and approved by Cabinet [17]. Finally, on 1st April 2004, ART initiation began at several service points across the country. Facilities had to be Baccredited^, needing to pass an exhaustive examination of 23 different criteria. The intention behind the accreditation approach to rolling out the treatment programme was to enable facilities to prepare adequately, but the process slowed down the pace of expansion considerably. The implementation approach created significant verticalisation of the programme and set the tone of the response, requiring teams of specialist healthcare workers to manage complicated bureaucratic procedures and put challenging obstacles in the way of delivery.

The ART Programme Begins By March 2005, the target of the Comprehensive Plan—to have at least one service point for AIDS related care and

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treatment in each of the country’s 53 districts—had been met. It took 12 months after rollout began—and more than 2 years after the Operational Plan was developed—to meet this target. All nine provinces had begun providing ART, but this was largely through better capacitated hospitals, a large number of them tertiary facilities. The number of people actually receiving ART remained far below what had been targeted. By September 2005, 17 months after rollout began, 85,000 people were enrolled on ART in the public health sector. By then, 200 (approximately 5 %) public health facilities were providing ARVs for the treatment of HIV services [18]. The national Department of Health issued a directive in 2005 instructing facilities that possession of an ID book was not a requirement for treatment, allowing foreign nationals to access the ART treatment programme. Donors such as PEPFAR and The Global Fund continued to support a broad array of interventions, including support to large non-governmental organisations, to support and provide HIV care and treatment. In 2006, Cabinet signed off on the new National Strategic Plan (NSP) for HIV and AIDS and STIs, 2007–2011 prepared by the South African National AIDS Council (SANAC) in a laborious, politically charged but widely consultative process. The NSP ambitiously committed government to providing ART to 80 % of those eligible. In December 2007, an estimated 424,000 patients were receiving ARVs. The year 2008 was a landmark year for the HIV programme. A leadership transition in the African National Congress (ANC) saw the resignation of President Mbeki and his Minister of Health and the installation of an interim government between September 2008 and May 2009. In December 2008, the estimated number of patients on ARVs had grown to 678,550. In May 2009, the newly installed President Jacob Zuma immediately acknowledged HIV as among the most important challenges facing the country, and Dr. Aaron Motsoaledi, appointed as Minister of Health, brought urgency and a renewed focus to the HIV response. The new minister began his tenure by frankly acknowledging that South Africa’s health care system has spent the last B10 years pedalling backwards^ [19], and began freely citing the extensive HIV data available from the research community within the country, as well as several highly influential and critical reviews on the country’s health system published in The Lancet [20]. During his address to the National Council of Provinces in 2009, the President highlighted Bthe chilling statistics that demonstrate the devastating impact that HIV and AIDS is having on our nation^. He declared World AIDS Day 2009 as Bthe day on which we start to turn the tide in the battle against AIDS^. With the number of patients on ARVs estimated to be more than 900,000, South Africa launched a massive national HIV counselling and testing (HCT) campaign in April 2010, with the President publicly tested for HIV, among the 20 million

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South Africans to learn their status over the next 20 months. The sheer scale of patients anticipated to be identified by the campaign led to the announcement that the bureaucratic process of accreditation would be abandoned and that all public health facilities would be geared up to provide ART. A significant change included the training of large number of nurses to initiate patients on ART. Previously, only medical doctors were allowed to initiate patients on treatment. This campaign included the announcement that South Africa would launch a massive medical male circumcision (MMC) drive, with KwaZulu-Natal the first province to roll this out at scale, through an announcement by the King of the Zulu nation (the majority group in the province). Although this was hampered by controversy over the use of a circumcision device that many felt was unsafe. By the end of 2010, 131,117 men had been circumcised. At the end of the year, in sharp contrast to the booing President Mbeki received at the 2000 AIDS Conference, the Deputy President and Health Minister received a standing ovation at the International AIDS Society Conference held in Vienna in 2010 after presenting the significant progress made in expanding access to treatment in South Africa. With far less drama than previous HIV guideline revisions, and signalling the Bnormalisation^ of the HIV policy response, the national Department of Health published guidelines relating to tuberculosis, PMTCT, HCT, and community caregivers and MMC, and moved towards Btask sharing^ as part of primary health care restructuring. The year 2009 also saw the restructuring and strengthening of the SANAC, responsible for the overall coordination of the response to HIVs and better coordination between civil society and government. The national Department of Health also revised the ART guidelines in 2010 expanding treatment to all children under 1 year; all pregnant mothers regardless of CD4+cell count; and all TB-HIV co-infected patients with a CD4 count of less than 350 cells/μL. The guidelines also changed ART for both first- and second-line therapy to make it safer, but more expensive. By the end of 2010, it was estimated that 55 % of adults and 36 % of children eligible for ART were receiving it. Between 2010 and 2014, the average price of antiretroviral drugs, the single biggest expense in treating HIV, was decreased by more than 40 %, as a result of the South African government using international benchmarks to get manufacturers to reduce their prices to SA. From being in a situation where the AIDS response had been lagging behind the rest of the world, SA had moved to being an innovator and setting benchmarks for other countries to emulate. On World AIDS Day 2011, South Africa launched a third NSP for 2012–2016, which included a strong focus on marginalised groups such as sex workers, men who have sex with men, truckers and adolescents [21]. The head of the national Department of Health’s HIV programme pointed to the dramatic acceleration of the ART programme, stating that BIt’s

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actually quite extraordinary that in 2004 we had only 47,000 people on treatment… By mid-2011, we had 1.79 million people. It’s almost a city^ [22]. In 2012, a decision was made to increase the initiation threshold to a CD4 count of 350 cells/μL for all adults; to put all pregnant and breastfeeding HIV positive women, and TB-HIV co-infected patients on ARVs irrespective of CD4 count as well as to expand access thresholds for children. On 1 January 2015, new HIV guidelines were introduced. These further raised the threshold for initiation of ARVs to a CD4 count of 500 cells/μL or less for all HIV infected people. The guidelines also extended ARVs for pregnant and breastfeeding women to lifelong treatment, the so-called B plus option in line with World Health Organization. By the end of 2014, an estimated 2.7 million people were on ARVs out of an estimated population of 6.4 million infected with a target of having at least 4.6 million people on ART by the end of 2016. Apart from the political sea change in the attitude to HIV, the government’s commitment to an accelerated HIV programme is also demonstrated in the level of financing provided for the programme. Whilst development aid for HIV, largely through PEPFAR, has been significant, the SA government continues to provide the bulk of the funding needed. Current spending by government on the HIV programme is estimated to be US$1 billion annually. Since 2008, there have been a range of public health successes as a result of the introduction of ARVs. Life expectancy increased dramatically from 57.1 in 2009 to 61.3 years in 2012, and child and infant mortality rates have decreased by 25 % over the same period [23•]. The latter indicators were largely due to the immense success of the PMTCT programme, which is seen as a world-wide leader, with the early transmission rate of HIV from mothers to children declining from more than 8 % in 2008 to 2.6 % by 2012 [9, 24]. This has translated into a decline of infant mortality with the large number of pregnant women tested for HIV and on treatment also contributing to declines in HIV associated maternal mortality.

circumcision and condoms need to be addressed. Monitoring systems are being strengthened to ensure that patients who are defaulting are rapidly found and restarted on treatment. Cost remains an issue [26]. In retrospect, the progressive evolution of the HIV & AIDS conditional grant (a mechanism for ensuring that there is ring-fenced funding to support the HIV response in the health sector) over several years into a flexible, simplified funding mechanism was probably critical to finding a financing vehicle capable of successfully channelling hundreds of millions of rands into the new comprehensive treatment programme in the space of just a year or two. This had not been the deliberate intent of those who had nurtured the grant (the government’s HIV/AIDS investment) US$1.5 million infant to the more than US$1 billion behemoth it has become in 2014/15 [27], but the grant mechanism appears to have endured successfully. Since 2009, a new administration has rapidly normalised the response to the epidemic. The political and science battles appear to largely have been fought [28•]. The harder job of ensuring a system of delivery that secures decades of effective HIV prevention and care now looms as possibly the greater challenge. As HIV is a chronic disease the need to fully integrate HIV into the primary health care system and simultaneously to strengthen the health system will be a vital task for the South African government as well as its key stakeholders. Two of the authors have presented some of the issues raised in a prior history review [29].

Conclusion

References

Huge challenges remain for the HIV response. HIV care provision requires a functional health service and failures threaten the existing and further scale-up of antiretroviral care. Having access to world class medication and initiation threshold is small comfort when reports from across the country of drug-stock outs suggest a major problem in supply systems well beyond HIV care [25]. Key populations, such as sex workers, men who have sex with men, truckers, adolescents and men in general, are not accessing services enough. Addressing the structural factors that increase vulnerability is the main focus of the development agenda going forward. Enablers such as poverty, unemployment, alcohol abuse, gender violence, teenage pregnancy and access to evidence-based interventions such as male

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Compliance with Ethics Guidelines

Conflict of Interest Nono Simelela, W. D. Francois Venter, Yogan Pillay, and Peter Barron declare that they have no conflict of interest. Human and Animal Rights and Informed Consent This article does not contain any studies with human or animal subjects performed by any of the authors.

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A Political and Social History of HIV in South Africa.

For the past 25 years, South Africa has had to deal with the inexorable and monumental rise of HIV. From one or two isolated cases, in the late 1980s,...
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