by Ashraf Grimwooda
a Kheth'Impilo, Management, Cape Town, South Africa
published in the journal AIDS Care, Oct 9, 2010
South Africa has had the largest global HIV epidemic for close to two decades. The rule of democracy since 1994 did little to slow the exponential growth of this epidemic. The new leadership focusing all attention on matters of state-like economic disparity, poverty and unemployment amongst the previously disadvantaged, ignoring the warning threats of the oncoming plague of HIV by people like Peter Doyle. This was despite the National AIDS Convention of South Africa’s resolution reached by the ‘‘government in exile’’ and other civil society leadership in 1992, Maputo, to address the epidemic in a focused and urgent manner as soon as democracy is restored. Civil society was expectant, waiting for a response. The then incoming Minister of Health Dr Nkosasana Zuma appeared to have a plan but soon she focused
on getting her anti-tobacco legislation through parliament, which she did very successfully. The extravagant waste of meagre resources on poorly thought through communication strategies on HIV prevention, as in this case, Sarafina II, unsettled civil society. This was exacerbated by the reluctance to institute AZT to prevent ‘‘mother-to-child’’ as undertaken by Thailand, a country with a lower GDP. The inappropriate support from government for the untested organic solvent Virodene as a major HIV treatment breakthrough, prior to any authorised research ethics committee or Medicine Control Council’s approval met with a huge public outcry resulting in the removal of a prominent professor of pharmacology, who refused to evaluate unethical data of this ‘‘research’’, from the MCC Board by the Minister. Dr Manto Tshabalala-Msimang replaced Dr Nkosasana Zuma as the new minister of health bringing with her a renewed sense of hope as she had supported the use of zidovudine in the prevention of mother-to-child transmission while in the Ministry of Justice, civil society needing a sense of hope in a country where there was the ever-escalating HIV antenatal survey figures. The country’s leadership was just not taking HIV seriously. Here was the ray of hope we were waiting for _ access to zidovudine for pregnant mothers, maybe there was the possibility of at least reducing mother-to-child transmission using evidence-based medicine.
Then in October 1999, I received a call while overseas from a journalist asking if I had heard that President Mbeki was questioning the science on the efficacy of zidovudine after having read counter arguments on the web. Back home there was a mad scrambling by civil servants to get evidence from sites where zidovudine was being used as to the adverse events and non-efficacy of this intervention. Soon in early 2000 this escalated into the questions from the President as to the causal link between HIV and AIDS, the specificity of the HIV antibody tests, the high rates of HIV positivity being a consequence of false or mis-readings due to the high rates of TB, that condoms were not effective against viruses like HIV, if they do exist, as the pores in the rubber latex were large enough to allow the passage of these viruses. The Presidential AIDS Advisory Panel was then setup to answer these questions, with a strong bias towards the denialist lobby, effectively stalling access to treatment and mother-to-child prevention for another four years. This had the greatest impact on the uninsured and unemployed who could not access any treatment unless through treatment trails undertaken by academic hospitals. Those wealthy enough to purchase antiretrovirals locally, or able to access treatment overseas were able to keep themselves alive from 1996 be that at a huge personal financial outlay.
Despite the lack of support from the leadership, civil society lobbied and were able to move the Ministry of Health to developing the comprehensive Plan for HIV Treatment access which was adopted by Cabinet in November 2003 for the countrywide implementation. This also resulted in a significant drop in the cost of treatment further improving access to treatment for those insured. The President in the meanwhile removed himself from the ‘‘cause’’ to address the impact of HIV and AIDS. The schizophrenic approach from the Ministry of Health, where on the one hand antiretroviral treatment was being rolled out, reluctantly in places, and on the other the full commitment and support of untested ‘‘natural’’ therapies like beetroot, garlic and ubajane to name a few, resulted in a confused and somewhat patchy response to treatment rollout, negatively impacting on staff and patients alike. Some patients opted to stop or delay treatment with dire consequences.
Seth Kalichman’s Denying AIDS places these events into an international context quite successfully, pulling together the global network of denialists. Why did South Africa chose the path of denialism at this most critical stage where the epidemic was still in its acceleration phase is not clear. Was the agenda for political gain, financial or corporate support or was this due to a deep and private fear of knowing of one’s own risk and fear of the possibility of being positive? Was there a more sinister Malthusian agenda or a genuine mistrust of orthodox science? The analysis of techniques used through denialist journalism makes for interesting reading, especially the exploitation of individual fear and creating confusion through the morphing of science into technobabble. The author makes a strong link between the more common conspiracy theories and denialism and highlights some of the more prominent scientific minds supporting these. Why though begs to be asked, and is, but the answers are as complex as is this phenomenon. Was President Ronald Reagan (like leaders in China and Russia) of the denialist movement because he did not support evidence-based needle exchange programmes or was he being politically expedient by cowering to the religious right with their conservative and uninformed moral and punitive views on HIV?
This book focuses on the top tier of the social order of denialism, those who propagate the misinformation about HIV. Under these are those who gravitate towards denialism and conspiracy theories. In his own words, the largest section makes up the lowest tier and they are the ‘‘least visible and also most concerning’’, these being the patients with HIV, the recently diagnosed, grappling with the burden of knowing their status and what this means for the rest of their lives. This is an area that will need greater focus in future writings. With the appointment of the new cabinet after President Mbeki led by President Jacob Zuma with the new minister of Health, Dr Aaron Motsoaledi, denialism is a non-issue at the top of the ‘‘pyramid’’ where there is the political leadership that can make or break the stranglehold of denialism as seen through the ages. There is a renewed sense of hope. The country is now poised to undertake the huge challenge to regain the ground that has been lost through the Mbeki years and improve access to prevention, treatment, care and support. Civil society is being mobilised to meet these challenges.
On the individual level, where denialism is a form of coping with the reality of shock and grief, the care worker is constantly presented with an array of complex manifestations that need to be addressed to ensure maximum benefit from treatment. The newly diagnosed may find comfort in denial from time to time, as the challenges of living with HIV manifest. Addressing these very personal challenges of denial has not been the focus of this book although touched on. The care worker realises that individuals all have their own journeys through oming to terms with this diagnosis, being there in a supportive way more than bridges this gap between denial and acceptance. The complexity of denialism at the top of the pyramid is though reflected through the rich text and solid research that went into writing this book where the author tries to find the root of HIV denialism and the reasons behind this phenomenon.
This well-researched book makes for interesting reading and diligently chronicles the events in the sad history of this epidemic, accurately highlighting the elements fitting for a Shakespearian tragedy. Recent events though in South Africa have shown how these can be rapidly overcome. There is though no time for complacency, more people need access to improved, cheaper treatment. Slipping back into denialism
and pseudoscience can recur again. Denial at the individual level presents ongoing challenges and addressing these in a creative way will always be the essence of care. There is no need for people in
leadership, be they from any sector (government or the religious sector), with their denialism conspiracy
theories to add to these challenges.
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