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Denial and defiance: a socio-political analysis of AIDS in South Africa

Schneider, Helen; Fassin, Didier

Epidemiology, social, cultural and political

1Centre for Health Policy, University of Witwatersrand, Johannesburg, South Africa

2Centre de recherche sur les enjeux contemporains en santé publique, Université Paris 13-Inserm, Paris, France.

3Correspondence to Helen Schneider, Centre for Health Policy, PO Box 1038, Johannesburg 2000, South Africa. E-mail: helens@mail.saimr.wits.ac.za

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Introduction

In May 2000, South Africa's President, Thabo Mbeki, convened an international panel to consider the causes of and appropriate solutions to AIDS in the African context. Significantly, the panel included representatives from the so-called AIDS dissident community. The willingness of the President to entertain, if not unequivocally endorse, dissident science created an international stir. It resulted in the Durban Declaration, a petition of more than 5000 scientists in support of the ‘orthodox’ views of HIV, launched at the International AIDS Conference in July 2000. However, in October 2000, after several months of intense national and international media coverage on the issue, the President informed his party, the African National Congress (ANC), that he was withdrawing from public debate over the science of HIV/AIDS [1]. Moreover, the government announced that it would make the antiretroviral drug nevirapine available in pilot sites to prevent mother-to-child-transmission (MTCT) of HIV [2], thus meeting a long-standing demand from the AIDS community. It thus appeared as if the national impasse that had characterized much of 2000 was showing signs of ending. In this context, the mobilization of an alliance, led by the Treatment Action Campaign and the Congress of South African Trade Unions, in support of the South African government in its court battle with the pharmaceutical industry, gave the impression of a united front against AIDS. Government and activists jointly celebrated when, in the face of international and local disapproval, the Pharmaceutical Manufacturers Association withdrew its 3-year-old legal action in April 2001. [The court action was instituted against the Medicines and Related Substances Control Amendment Act (90) of 1997, specifically Section 15C, allowing for measures (compulsory licenses and parallel imports) that would allow government to procure essential drugs at cheaper prices.]

However, the hopes that these events would put the AIDS response in South Africa on a new footing were premature. As the social and epidemiological crisis of AIDS unfolded, the political crisis surrounding AIDS intensified. During the course of 2001, the presidency's efforts to shape discourse on HIV were never far from the public space. Between February and May 2001, as the prices of antiretrovirals started falling and the generic manufacture of these drugs became a legal possibility, ANC Today, the web-based newspaper of the ANC, carried a series of articles about the dangers of antiretrovirals [3–6]. In September 2001, the President wrote a letter to the Minister of Health questioning mortality data (and therefore the magnitude of the HIV epidemic) [7]. Finally, reference to the dissident position emerged again in March 2002 when ANC leaders renewed the assetion that ‘the hypothesis that HIV causes AIDS is an assumption, not a fact’ [8]. Despite a promise of change, it was clear that the dimensions of earlier controversies (questioning the effects of drugs, the seriousness of the epidemic and the aetiology of the disease) were still at stake.

In the meantime, the pre-occupation and fascination with the AIDS problem in South Africa has continued unabated in the scientific literature, locally as well as internationally (see for example [9–12]). But is what is happening in South Africa that exceptional [13]? The present paper analyses the factors underlying recent events in the field of AIDS in South Africa. It suggests first that the often stark reporting of the controversies around AIDS fails to represent what is in reality a nuanced and ambiguous policy environment. Second, the paper suggests that the positions of the state, while incomprehensible on the surface, are driven by a set of pre-occupations that are worth noting and opening up for greater international debate.

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Denial and beyond

AIDS activist Zackie Achmat was echoing a commonly held view when he wrote that ‘Mbeki epitomizes leadership in denial and his stand has fuelled government inaction’ [14]. Denial is generally seen as an individual or collective inability to face an intolerable reality by pretending that it does not exist. It is portrayed as a problematic but common phase in coming to terms with HIV; a pathological moment in the personal or national psyche that has to be overcome if appropriate responses are to evolve [15,16]. The slogan ‘breaking the silence’ has become a kind of global leitmotiv in AIDS, suggesting that denial is a universal phenomenon.

In the South African context, denial responds to two distinct logics: denial of reality, and denial of justice [17]. The rapidity of evolution and the force of the AIDS epidemic in South Africa, for which there are neither clear reasons nor simple solutions, are extremely difficult for anybody, whether state leader or lay person, to assimilate. In a denial of reality, leaders proclaim that the presence of AIDS is not true; meaning, it is not possible, so it is not. In addition, AIDS has emerged as a kind of everlasting affiliction precisely at the point when the end of apartheid should have brought a better life for all. This is a denial of justice: it is not normal; meaning, it is so, but it should not be. As one journalist put it ‘how is it possible that, at the very moment we assume our victorious place as the leaders of a democracy we struggled for decades to bring about, we are presented with a dying populace, with a plague to which we have no answers?’ [18]. The society is denied justice but is also itself denying justice. The government's brakes on the roll-out of nevirapine for MTCT have been fought on the basis of an unjustifiable denial of constitutionally entrenched social and economic rights.

To suggest, however, that the essential character of the state's positions on AIDS is one of denial is not an adequate explanation. First, it is necessary to ask why the South African president, regarded as a credible African leader and a skilled diplomat capable of enormous discursive flexibility [19,20], should feel compelled to take such an awkward and unpopular stand on AIDS. In the face of massive condemnation and at enormous political risk, he has actively promoted an alternative reading of AIDS and its causes, questioning scientific facts and insisting on poverty as a factor in AIDS. This implies less a stance of silence than one of active defiance. Second, this stand has often been directly at odds with public policy on AIDS, which over the past few years has involved large and ever-increasing budgetary allocations and the implementation of programmes based on standard precepts for AIDS policy. It has thus been possible for the Director of the AIDS Program to play a leading role in the drawing up of normative frameworks such as the Abudja Declaration [21], and to say that she could insulate herself from ‘the politics’ and ‘stay focused on delivery’ [22]. It is also conceivable that, in the absence of intense political pressure from activists, MTCT prevention would have been decided and implemented in much the same way that many other health interventions have been in the post-apartheid era.

Between the discourse and the policies of the South African state on AIDS lies a complex and sometimes contradictory set of motivations and processes, shaped in part by several years of controversy and contestation between various players over national AIDS policy, and in part by the longer history and experience of apartheid.

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MTCT as the focal point

The AIDS policy process in South Africa has been characterized by disagreement and often overt conflict between political leaders and activists and researchers [23,24]. Despite their common origins in the political traditions of the anti-apartheid movement, a series of events in the AIDS field in the post-1994 period led to increasing alienation between these actors. The first was Sarafina II, an expensive AIDS musical commissioned by the Minister of Health in 1995 and openly criticized by the AIDS fraternity, in period when few were willing to challenge the new government. This was followed by over-hasty support by the government for virodene, a local AIDS ‘treatment’ discovery in 1997. Although eventually discredited, virodene was the subject of a media polemic between senior politicians (including Mbeki, Deputy-President at the time) and the scientific and medical community. Then, as the government launched the prevention-oriented Presidential Partnership Against AIDS in 1998, the activist community presented its own, treatment-oriented demands for the introduction of zidovudine for the prevention of MTCT. Arguments about the toxicity of zidovudine, including those made by dissident scientists, emerged at this point, with Mbeki (becoming President in 1999) increasingly intervening in public debates on AIDS and MTCT. Despite broad support from within the state bureaucracy for an MTCT programme, plans to initiate pilot sites during 1998 and 1999 were brought to an abrupt halt by political leaders (except in the Western Cape, a non-ANC aligned province, which instituted a zidovudine-based MTCT programme).

Although HIV-infected infants account for less than 5% of total HIV infections in South Africa, and preventing these infections involves a relatively uncomplicated intervention, the issue of MTCT has assumed a political and symbolic importance way beyond its epidemiological and public health relevance. State resistance to MTCT can be seen as an ongoing attempt to establish and maintain its authority over the content and pace of AIDS policy. For activists, MTCT represents one of the first significant interventions, affordable and implementable on a large scale, targeted at people already infected with HIV. As a symbol of hope centred on children, MTCT has broad public appeal. The highly publicized story of Nkosi Johnson, the HIV-infected child who died at the age of 12 years in June 2001, exemplified the tragedy of HIV. MTCT also signals the entry of and the possibility of broader access to antiretrovirals in the public sector. Not insignificantly, a local research community involved in MTCT studies has provided the evidence and scientific legitimacy for a focus on MTCT [25,26].

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Conflict and consensus

Between May and November 2001, after ongoing pressure from a range of stakeholders and 9 months after first indicating its intentions, the government established 18 MTCT pilot sites (based on nevirapine) across the country, reaching about one-tenth of pregnant women using the public sector [27]. Further roll-out was to wait for 2 years of experience in the pilot sites. Frustrated at the slow pace of implementations of the MTCT programme, the Treatment Action Campaign and two other groups launched an application in the Pretoria High Court in August 2001, seeking to make nevirapine immediately accessible in the public sector outside of pilot sites ‘if the doctor or attending nurse feels this is necessary’ [28] and ‘demanding that the government institute a comprehensive programme across the country to reduce mother-to-child HIV transmission’ [28]. This legal action set in motion a new period of conflict ultimately leading to a resolution, in April 2002, in which the national Cabinet gave the go-ahead to roll-out MTCT and to widen the use of antiretrovirals [29]. These struggles (presented chronologically in Table 1) were significant for a number of reasons.

Table 1

Table 1

Seen as a whole, the positions of the ANC, the president and the executive suggest considerable ambiguity towards MTCT. Echoing the general ‘two steps forward-one step back’ dynamic of AIDS policy in the recent era, at several points statements in support of MTCT were made and policy processes set in motion for a roll-out, only to be contradicted shortly afterwards. For example, in February 2002, on the occasion of the opening of parliament, the President announced increased spending for AIDS, including for the expansion of the MTCT progamme. This was seen by ‘the general community of media and analysts … as a turning point’ in which ‘Mbeki had done a Muhammed Ali shuffle, deftly moving out of the corner of the lingering debate about his views on Aids’ [35]. The official position had evolved from open denial of scientific facts to more subtle concerns with public health infrastructure. However, soon after, things appeared to go back to square one, when the Minister of Health countered an initiative by the Gauteng Province to roll-out MTCT and was supported by the ANC, which not only called a halt to further roll-outs, but once again opened the debates on the cause of HIV [36]. Then, just 1 month later in another major turn-around, Cabinet issued its wide-ranging statement on AIDS [29] in which, among others, it committed the government to respecting the court rulings on nevirapine, preparing an MTCT prevention roll-out plan as a matter of urgency and making antiretroviral drugs available as post-exposure prophylaxis to rape survivors. Furthermore, Thabo Mbeki formally distanced himself from the dissident scientists [37].

As the issue of MTCT began to threaten the legitimacy of the government, inside and outside South Africa, these seemingly contradictory positions appeared to be manifestations of intense contestation within the state. Not only were increasingly strong views being expressed on the issue within the ANC (including by the former president Nelson Mandela, the ANC's health desk and other ANC ministers in the cabinet), but HIV was at the centre of interactions with the parties and groupings in alliance with the ANC (the trade union federation the Congress of South African Trade Unions, the Communist Party and the Inkhatha Freedom Party). Using their autonomy in a quasi-federal system, two provincial governments began MTCT roll-outs despite national disapproval. These internal pressure and the external court process eventually led to the consensus outlined by the Cabinet in April 2002.

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Conflict as a resource

The events around MTCT, relayed on a blow-by-blow basis to the nation and the world by avid media scrutiny, have had a number of political consequences that may ultimately reveal themselves as resources for democracy. There has been a striking degree of public criticism of executive decision-making on the part of all players, within and outside the state. A tendency towards ‘solidarity’ politics in the ruling class where ‘party members in good standing are defended against criticism by outsiders even though they may have broken the moral code of the national community at state level’ [38] has been challenged, and the right of social movements outside the formal political alliances of the ANC to participate in the AIDS policy process asserted.

Apart from its impact on political practice, the MTCT issue has brought the judiciary into play in meeting the needs of the poor. The Treatment Action Campaign court application in August 2001 was based on the right to health care contained in the Bill of Rights in the new South African Constitution. This right forms part of a broader set of social and economic rights for which the state is required to take ‘reasonable legislative and other measures within its available resources, to achieve the progressive realization of each of these rights’ [39]. The eventual ruling by the Constitutional Court is seen as setting a precedent in clarifying the extent to which it can intervene in executive decision-making on social policy. On the contrary, despite a series of judgments against it, the executive has shown its repsect for the independence of the judiciary by rapidly countering a suggestion (made on one occasion by the Minister of Health) that one of the court rulings on nevirapine would not be heeded, and by repeatedly reiterating its intention to implement the decisions of the courts. If the political battles have created confusion in the minds of ordinary citizens and delayed necessary action, the effects on AIDS may not all be negative. The intense coverage of the issues has brought AIDS to the centre of national consciousness, and the growing link being made between HIV and broader socio-economic rights can only benefit the society's ability to deal with it in the long term. However, in the discourse around AIDS and in the frequent reference to issues of race, promiscuity and conspiracy, lies a set of unresolved tensions that are likely to resurface.

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Race and conspiracy

As with ill-health generally, AIDS in South Africa is a highly unequal phenomenon, reflecting the gradients of racial advantage under apartheid [40]. Openly racist interpretations of the AIDS epidemic that were common in the apartheid era [41,42] now continue in deeply held stereotypes of African sexuality as violent and uncontrolled [43]. Intellectuals such as Frantz Fanon [44] have pointed out that such assumptions allow the West to create a self-image and identity of purity against the ‘degenerate other’ of Africa. Mbeki was no doubt referring to this, in his speech to (largely black) university students in October 2001, when he said: ‘Convinced that we are but natural-born, promiscuous carriers of germs, unique in the world, they proclaim that our continent is doomed to an inevitable mortal end because of our unconquerable devotion to the sin of lust’ [45].

Racism in AIDS is just one part of the daily reality faced by black people in South Africa. Eight years after the political transition, South Africa remains one of the most unequal societies in the world [46]. While the de-racialization of the state and civil service has permitted the rapid growth of a black middle class, social and economic privilege is still heavily concentrated in the hands of the white population [47]. A focus on AIDS through the lens of racial experience thus forms part of a general shift in the national political language from the Mandela era of reconciliation, to the Mbeki era in which widening social inequalities have to be both explained and confronted [20].

In Africa, discourses of persecution and conspiracy linked to AIDS, whether by the pharmaceutical industry, medical researchers or Westerners, have not been unusual, where they have been dismissed as a kind of post-colonial complex without factual grounding [48]. However, in the case of South Africa, not far back in people's memories is a long tradition of racial public health that included many attempts, for example, to control African fertility, both legally [49] and illegally. The Truth and Reconciliation Commission hearings revealed a covert Chemical and Biological Warfare Program intended to eliminate black leaders and to create infertility among black people [50]. It should not, therefore, come as a surprise that the experience of AIDS is interpreted in the light of past suspicion.

The position of the President can thus be seen as an attitude of defiance towards official scientific knowledge, a deliberate act to challenge established truths of AIDS, whether biological or social, and an identification with those on the margins, whether of science or society. Such heterodoxy takes place often on behalf of Africa and within the framework of the ideological model of African Renaissance, emphasizing the necessity for the black continent to find its own solutions to its own problems [51].

This was the context of the Presidential AIDS Advisory Panel and its key question: ‘Why is AIDS heterosexually transmitted in sub-Saharan Africa, while it is largely homosexually transmitted in the Western world?’ [52]. Although this could be taken as a desire to assert a distance between ‘African’ sexuality and ‘Western’ homosexuality [16], the direction of inquiry is guided by another of the terms of reference in which panelists were asked to consider ‘Prevention of HIV/AIDS, particularly in the light of poverty, the prevalence of co-existing diseases and infrastructural realities in developing countries’. AIDS in Africa is thus located in a specific social and economic reality, rather than primarily in the behaviour of individuals. Underlying both is a deep resistance to the idea of African promiscuity, and the desire to invoke alternative explanations for the epidemic, albeit very often framed in the loose concept of ‘poverty’.

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Global denial?

These pre-occupations point to an international silence in AIDS research on the reasons for the scale of the epidemic in Africa, and for its ‘explosive’ [53] nature in southern Africa. The geographical distribution of HIV in South Africa reflects a series of HIV epidemics, yet beyond a degree of conjecture we have little real understanding of the reasons for the observed patterns. A belated study by UNAIDS [54] comparing African cities with low and high HIV prevalence found that sexual behavioural variables could not account for epidemiological differences. Yet the reality is that AIDS in Africa is still approached with a combination of predominantly behavioural and neo-liberal perspectives [55], a fact obscured by the global acceptance of a human rights discourse in forums such as the International Partnership Against AIDS in Africa [56] and the United Nations Special Session of AIDS held in 2001. These perspectives reduce the problem to the ‘default option’ of sexual behaviour, and reduce the response to narrow, cost-effective interventions. This is implicit in the World Bank's view that the failure to control AIDS in poor countries comes from governments neglecting to own the problem of AIDS and to implement internationally defined technical blueprints [15].

Absent is a systematic consideration of the social, economic and historical determinants of the epidemic, which could explain not only the reasons for the severity of AIDS in Africa and the large differences within the continent, but also begin to suggest appropriate responses. Such responses are likely to situate African responsibility for the epidemic in a clearer context of local and global relations, a fact better understood by AIDS activists in the past few years. In the case of South Africa, more than a century of racial segregation, then overt apartheid, has produced the roots of the disease through huge economic inequalities, high levels of social violence and large-scale dislocation of households and communities.

While in the earlier years of the epidemic there were some notable attempts at a political-economy of AIDS in Africa [57–59], as Stillwagon [60] points out ‘what has been missing is an interdisciplinary approach that incorporates biological and social data into an analysis of the social context of HIV disease in Africa’. In other words, a coherent social epidemiology, that builds on both social sciences and the emerging field of inequalities research in public health [61]. Taken from the lived reality of Africa and from the perspective of Thabo Mbeki, these absences may themselves be seen as a denial of justice.

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            Keywords:

            AIDS; public policy; politics; South Africa

            Copyright © 2002 Wolters Kluwer Health, Inc.