Saturday, December 26, 2009

End of Aids denial era a chance to move forward

Manto Tshabalala-Msimang, photo credits: Mail and Guardian

Much has been written in the press recently about the death of South Africa’s former health minister, Manto Tshabalala-Msimang. Some of these reports pull no punches in highlighting the devastating role of the former health minister in buttressing former President Mbeki’s AIDS denialism. A recent Harvard University study found that the former President’s AIDS denialism was responsible for 350 000 deaths. In addition to this tragic loss of life, there were other less visible casualties. In particular, the polarised character of the politics of AIDS science during the Mbeki-era stymied open and constructive debate about how to tackle the pandemic.

The story of AIDS treatment in South Africa has been widely portrayed as a heroic David and Goliath struggle in which activists were pitted against the might of the state and the global pharmaceutical industry. But of course this is not the only way in which the AID treatment story in South Africa has been, or can be, narrated. Over the past decade, AIDS debates became highly polarised resulting in the emergence of sharply divided camps. During the height of these contestations over AIDS science it was very difficult to debate the merits of a range of issues including traditional healing, nutrition, diet, HIV prevention, ARV side-effects, and drug resistance, without risking being slotted into the pro-Mbeki AIDS dissident camp. Mere discussions of the relationship between HIV, nutrition and poverty provoked suspicion in some AIDS activist quarters. Even support for the government’s promotion of HIV prevention programmes was at times questioned by activists for diverting attention away from grassroots struggles for ARVs. In this highly charged political environment, there was little room for open debate and difference. Mark Gevisser’s empathetic biography of former President Mbeki, for example, was read by some AIDS activists as veering dangerously towards becoming an apologia for Mbeki’s brand of AIDS denialism. Didier Fassin’s (2008) even more empathetic reading of Mbeki’s “AIDS talk” in When Bodies Remember received a particularly hostile response from South African AIDS activists, health practitioners and academics.

The radical polarisation of AIDS positions and rhetorics was to be expected given the devastating reality of the AIDS crisis and the former President’s stubborn refusal to acknowledge the desperate need for antiretroviral therapy within the public health system. It was therefore perhaps hardly surprising that very clear lines were drawn and policed between various positions in AIDS debates during the Mbeki era. Of course similar polarising processes have surfaced in the course of contentious public debates on issues such as global climate change and nuclear energy.

Much has been written about the twists and turns in the politics of AIDS treatment in South Africa. Yet, most of these accounts have conformed to a David and Goliath narrative in terms of which heroic AIDS activists successfully fought against the might of the South African State and the global pharmaceutical industry. These accounts generally assume that activists were absolutely correct in claiming that ART is a financially viable, ethically principled, and scientifically proven biomedical technology whose successful implementation simply needed a cheaper drug pricing structure and the political will from donors and governments. There is very little ambiguity and contextual specificity in these accounts.

Sceptics and opponents of ART are described in these accounts as advocates of irrational arguments and pseudo-science. Some AIDS dissidents and denialists such as former President Mbeki and Manto Tshabalala-Msimang are even accused of complicity in genocide by activists and politicians. Borrowing liberally from anti-imperialist and anti-capitalist rhetoric, the dissidents argued that the profiteering pharmaceutical industry in the West was promoting AIDS drugs in order to exploit Third World markets. TAC activists featured in these dissident accounts as unscrupulous salespersons for the pharmaceutical industry. The dissidents also questioned the efficacy and safety of antiretrovirals, and instead promoted the efficacy of traditional medicines, nutrition, special diets (e.g., olive oil, garlic, African potatoes) and vitamins.

One of the costs of the “dissident debate” was that any questioning of AIDS orthodoxy of any sort was deemed to be complicit with AIDS denialism and dissident science. These highly polemical and politically charged contestations between activists and “dissidents” dominated the headlines, and contributed towards the radical hardening of the boundaries between positions on HIV. This resulted in the production of a stark divide between what was considered “proper science” and “pseudoscience.”

Even questions raised about cultural, logistical, financial and human resource obstacles to ARV rollout were labeled by some militant activists as examples of pro-Mbeki denialist thinking. Within the framework of these “epistemic wars” there was not much room to examine the complexities and nuances of health system realities and constraints.

During the height of these AIDS science wars, a small group of public health practitioners and health systems researchers argued that although the Khayelitsha pilot may have been located in a resource-poor urban community, the actual ART programme was very “resource-intensive.” They pointed out that the Khayelitsha programme benefited from massive donor funding and was supported by the well-resourced city and provincial departments of health. In addition, the MSF programme was driven by committed and highly skilled MSF clinicians, nurses, and activists. Due to its location, the Khayelitsha pilot was also able to attract clinicians and researchers from Cape Town’s academic hospitals and schools of medicine and public health. In other words, these public health pragmatists argued that, notwithstanding the successful treatment outcomes at Khayelitsha, the MSF model was exceptional, and was not easily replicable in typical rural African settings. These health systems practitioners were criticised by activists for claiming that it would be extremely difficult to replicate the MSF model in provinces that were less well resourced and burdened with dysfunctional health systems.

Cultural arguments were also deployed by some sceptics to highlight numerous barriers to testing and treatment. One of the most sophisticated of these arguments appears in Jonny Steinberg’s much acclaimed book on the reasons why a young man Steinberg got to know persistently refused to test for HIV even though he was very familiar with issues relating to HIV and treatment, and he lived close to the MSF treatment site in Lusikisiki. Steinberg’s book offers numerous cultural, social and psychological reasons for the man’s reluctance to test. For some activists, however, studies that emphasised cultural obstacles to treatment were regarded as providing an alibi for not fighting AIDS and providing treatment. As one of the TAC veteran activists told me, the aim of the TAC was to instil scientific ways of seeing the world and to rid South Africans of backward superstitions.
While the AIDS dissident arguments of Mbeki and Rath could be discounted by the activists on the basis of credible scientific studies, it was not so easy to dismiss the observations of Steinberg and others regarding the cultural, social and psychological obstacles to HIV testing and treatment in many parts of South Africa. It was even more difficult to dismiss the claims of public health experts on the extensive challenges of ART provision in the public health systems in South Africa’s poorer provinces.
The response from MSF, together with its TAC partners, was to start up a treatment programme in Lusikisiki, an impoverished rural area in the Eastern Cape Province. This programme sought to prove to sceptics that it was indeed possible to replicate the successful Khayelitsha programme in resource-poor rural settings. As in Khayelitsha, MSF developed a decentralized, people-centred, and nurse-driven approach to ART that was based on primary health care principles and practices, rather than relying on doctors and vertical, hospital-based treatment programmes. Studies of treatment outcomes at Lusikisiki demonstrated that it was indeed possible to have successful ART programmes in resource-poor rural settings.

Whereas the MSF programme in Khayelitsha was well-resourced and had a vibrant AIDS activist movement at its disposal, in Lusikisiki it was much more difficult to mobilize and there were countless social, economic and cultural obstacles to the promotion of HIV prevention, testing and treatment literacy. Activists in the rural villages of Lusikisiki District encountered numerous barriers to their biomedical messages, and alternative conceptions of illness, beliefs in witchcraft, and AIDS stigma and denial seemed much more entrenched in these rural settings. The health systems skeptics were clearly not far off the mark when they identified a litany of constraints and challenges for ARV rollout in the more resource-poor rural provinces.

Throughout the Mbeki period, and up until the present, a number of public health practitioners and academics managed to straddle the scientific and ideological divides that separated activist and health systems approaches. These practitioners and researchers provided pragmatically oriented health policy studies that identified the challenges of scaling-up treatment in South Africa and elsewhere in Africa. These studies highlighted health systems concerns that tended to be bracketed out of the activist frame during the “AIDS science wars”. These challenges to ARV rollout included the growing caseload of people to be maintained on long-term ART; problems of shortage and skewed distribution in the health workforce; and the heavy workload of ART delivery models. Similarly, researchers have called for a strengthening of health systems in order to address the challenges of scaling up access to treatment in contexts characterised by ineffective health systems. They also identified human resource challenges that included inadequate supply, poor distribution, low remuneration and accelerated migration of skilled health workers. Clearly, ART is much more complicated than activists implied during the Mbeki-era contestations over AIDS science. At the same time, the fact that 700 000 South Africans are now on ARVs in the public health system, suggests that the activists were not entirely unrealistic in their expectations.

In the post-Mbeki period activists have reinvented their agenda by moving from protests and litigation to an active involvement with health policy and health systems. TAC has added to its repertoire of strategies, the production of policy briefs on various topics including the disability grant for people living with HIV, male circumcision, and the National Strategic Plan for HIV treatment. The organisation has also become directly involved in HIV prevention programmes and the rollout of condoms, the training of community health advocates, and campaigns against gender-based violence. Clearly, the Zuma Administration’s orthodox position on HIV has allowed for a shift away from the polarisation and discursive policing of the Mbeki and Tshabalala-Msimang period. What it also offers is the possibility of critical reflection on the ways in which contestations over scientific truth unfold under particular historical conditions.

In summary, AIDS activists undoubtedly played a highly constructive role in the fight against AIDS. By contrast, the AIDS denialism and dissident positions of former President Mbeki and his health minister were extremely destructive and contributed towards much suffering and loss of life. Another less obvious consequence of the AIDS science battles elicited by Mbeki and Tshabalala-Msimang was the polarization of debate around HIV, which in turn obscured the complexity of treatment provision and adversely impacted upon efforts to address such issues as HIV prevention, drug resistance and the numerous other challenges of the pandemic. Fortunately, the end of Mbeki era of AIDS denialism has created the conditions for responses that do take these challenges and complexities seriously.

Steven Robins,
First published in the Cape Times, 24th December, 2009