I like a Monday. It’s a rest day after a long Sunday run, meaning a chance to sleep in just a little, and the beginning of the week’s episodes of MasterChef Australia. And it’s the day before the house gets cleaned, the laundry finds it way from the basket to the closet, and the garden gets its “manicure”. So one can be a bit more relaxed about mess and disorder, or what others call living.
It’s also the day when we’re treated, or subjected, to former President Thabo Mbeki’s weekly online letter. Until this week, his attempts to clarify – some would say rewrite – history had done little either to excite or annoy me. Okay, I lie – they annoyed me a bit. But not enough to get me to do anything more than kvetch just a little more than I usually do.
So there I was on Monday, quietly working on some technical legal opinion, when I took a Facebook break. And this is what I read about letter number nine, posted by a friend and former colleague:
“We learn some things from Mbeki’s piece on HIV/AIDS today:
1. It’s now confirmed that he co-authored Castro Hlongwane, an embarrassing conspiracy-laden AIDS denialist document that was circulated to ANC branches. …
2. Mbeki continues to misrepresent or misunderstand death statistics, despite this having been explained over and over.
3. He is unrepentant about his AIDS denialism.
And that’s when the day went pear-shaped.
In response to one of a series of online posts I made that morning, a colleague of mine noted that Mbeki should have kept quiet: “I imagine this latest series of articles is like reconnecting with an ex”, he mused, “and then recalling just why you broke up.”
I giggled, pressed the like button, and noted that I hadn’t forgotten. You know what they say about Jewish Alzheimer’s: you forget everything except the faribels? Except this was no mere faribel — a grudge, held for years, over some trivial slight that has long since been forgotten — it was something a whole lot worse.
The article I had retweeted, a piece entitled “Mbeki explains his stance on HIV/AIDS during his tenure as president”, had angered me. “He explains nothing”, I remarked: “He simply rehashes what he always said. And remains defiantly non-apologetic. Sies!” “I was dumbfounded when I saw the headline”, wrote one friend; “Sies indeed”, posted another.
So what was Mbeki’s stance on HIV during his term of office?
By the time he became president, South Africa had already seen a couple of HIV-related scandals. There was Sarafina II, which involved the department of health’s funding of a musical production with deeply flawed HIV prevention messages. It had come under fire primarily because tender processes had not been followed.
And there was Virodene, which saw Cabinet support for an alleged cure for AIDS – in fact a toxic industrial solvent – that had been tested on human subjects without the approval of the Medicines Control Council. It is an offence to conduct unauthorised clinical trials. To date, no-one had been held to account for allowing these trials to happen.
These scandals were unfortunate, given the good work that had been done post-1994.
Within months of former President Mandela taking office, a national AIDS plan – which included a focus on law and human rights – had been adopted as official policy. A new HIV/AIDS directorate in the department of health had sought and received assistance from the AIDS Law Project (ALP) – now SECTION27 – on the implementation of a rights-based approach. And numerous court decisions and legislative developments had given substance to constitutional protections against unfair discrimination and unjustifiable limitations of the right to privacy.
These developments had marked a radical shift away from the apartheid-era response.
The first reported AIDS-related deaths in South Africa in the early 1980s had been described as “isolated cases”, with PW Botha’s government assuring the public that there was no need to panic as only gay men were considered to be at “high risk”. In 1987, regulations were promulgated to provide for foreign nationals with HIV to be denied entry to and/or to be deported from South Africa. A year later, 1000 foreign mineworkers with HIV were repatriated after their contracts were “not renewed”.
The early 1990s witnessed a significant shift. Shortly after its unbanning, the ANC hosted a health conference in Maputo that recognised the need to prioritise HIV prevention. At that conference, Chris Hani warned against “allow[ing] the AIDS epidemic to ruin the realisation of our dreams.” Noting that “statistics indicate that we are still at the beginning of the AIDS epidemic in our country”, he predicted that if left “unattended”, the epidemic would “result in untold damage and suffering”. Hani was right.
Soon thereafter, the ANC worked closely with the then department of health to set up an umbrella body to co-ordinate the country’s response to HIV. It was that body that produced the national AIDS plan that was adopted as official policy in July 1994 by the government of national unity.
But it was not all plain sailing thereafter, with HIV activists and the Minister of Health, Dr Nkosazana Dlamini-Zuma, clashing from time to time on a number of issues. Dlamini-Zuma’s plans in April 1999 to make AIDS a notifiable condition, which would have included an obligation on medical practitioners to inform immediate family members and caregivers of the “diagnosed” person, drew fierce criticism. So too did her October 1998 withdrawal of support for pilot sites to prevent mother-to-child transmission of HIV (MTCT).
At that stage, the state’s concern was primarily about cost. As a Treatment Action Campaign (TAC) letter sent to Dlamini-Zuma’s successor on June 11 2001 noted:
“In January 1999, TAC learnt that the government’s Inter-Ministerial Committee supported the decision by Minister Zuma and all the provincial Health Ministers not to provide AZT to pregnant women [to prevent vertical transmission of HIV]. … The summary from minutes of the Inter-Ministerial Committee on HIV/AIDS reads as follows:
‘… Based on the cost estimates and the limited health budget available, with the provincial health departments experiencing financial difficulties in providing basic health services, the Health MINMEC took a decision on 2 October 1998 not to introduce the AZT regimen at this point of time. However, this decision will be continuously evaluated as new scientific information on cost-effective interventions appropriate to our situation in South Africa becomes available including findings from the on-going PETRA (Perinatal Transmission) studies which are being conducted at the Chris Hani Baragwanath and King Edward Hospitals.’”
So on April 30 1999, just before the second democratic elections, Dlamini-Zuma met with TAC representatives and agreed on the need for united action to reduce the price of AZT. In a joint statement, the parties noted that the price of AZT was the major barrier to the introduction of an MTCT prevention programme. Dlamini-Zuma promised that government would take action.
TAC kept its side of the bargain. The state did not.
In a speech delivered in the National Council of Provinces (NCOP) on 28 October 1999, just six months after coming into office, Mbeki began his public questioning of the use of antiretroviral (ARV) medicines. In responding to the call to make AZT available to prevent HIV transmission from mother to child, and for post-exposure prophylaxis following rape, Mbeki spoke about the existence of “a large volume of scientific literature alleging that, among other things, the toxicity of this drug is such that it is in fact a danger to health.”
And then, after indicating that the Minister of Health had been tasked with “go[ing] into all these matters so that, to the extent that is possible, we ourselves … are certain of where the truth lies”, he ended with this:
“To understand this matter better, I would urge the Honourable Members of the National Council to access the huge volume of literature on this matter available on the Internet, so that all of us can approach this issue from the same base of information.”
Here was the great philosopher king, the leader of the African Renaissance, advising elected representatives to inform themselves by … surfing the web. Despite having direct access to world leaders in HIV clinical research, South Africa’s parliamentarians were being told to do it for themselves, just as they would if they were looking for advice on when to plant rhododendrons, or information on which bakery sells the best koeksisters.
In writing this piece, I decided to follow his advice. Using Google, as one does, I typed in the words AZT, HIV and toxicity. In addition to reading some reasonably balanced entries, I came across a bunch of denialist posts. By referring to denialism, I mean the belief that HIV does not cause AIDS. For some denialists, HIV does not exist; for others, it is a “harmless passenger virus” that has no relationship to AIDS.
An article posted on virusmyth.com by David Chiu and Peter Duesberg of the University of California at Berkeley concludes that “AZT, at the dosage prescribed as an anti-HIV drug, is highly toxic to human cells.” Duesberg is well-known for his 1996 book Inventing the AIDS Virus, which made the claim that not only does HIV not cause AIDS, but it is a harmless passenger virus. More on Duesberg a little later.
Another piece, also published on virusmyth.com, describes AZT as a “medicine from hell”. That piece was written by Anthony Brink, who has claimed the credit for “sparking” Mbeki’s “enquiry into the safety of the drug, announced in the National Council of Provinces on 28 October 1999”.
Brink’s claim is recorded in a fascinating Labour Court judgment, in a matter in which he unsuccessfully sued Legal Aid South Africa in 2014, claiming that he had been discriminated against on the basis of him being “an acutely unpopular and widely reviled leading dissident activist in the most politically inflamed and morally polarised domestic policy dispute in the democratic era, the AIDS treatment controversy.”
And then there’s “Poisoning Our Babies — The Lethal Dangers of AZT”, by Neville Hodgkinson, a British journalist who also denies the link between HIV and AIDS. At the end of the piece, under the heading “For More Information”, Hodgkinson refers to Christine Maggiore’s book What If Everything You Thought You Knew About AIDS Was Wrong?, describing it as “an accessible introduction to problems in AIDS science and policy.”
According to Maggiore’s website, to which Hodgkinson refers, she has “abundant good health and live[s] without pharmaceutical treatments or fear of AIDS.” Maggiore, who was diagnosed with HIV in the 1990s, died in 2008. She had refused to take ARVs to reduce the risk of transmission during her pregnancy in 2001. Her daughter, who was never tested for HIV, died in early 2005 of an AIDS-defining illness. She was not yet four at the time of her death.
So much for my Google search. Now back to the timeline.
In early 2000, Mbeki established an international AIDS advisory panel tasked with – among other things – advising him on whether HIV causes AIDS. Its terms of reference posed a number of questions that “needed to be addressed in dealing with this issue of the evidence of viral aetiology of AIDS and related concerns about pathogenesis and diagnosis”, including this gem: “What causes the immune deficiency that leads to death from AIDS?”
The panel was comprised of equal numbers of “orthodox” scientists and denialists – or in the language of the “synthesis report of the deliberations by the panel of experts”, an equal number of “panellists who do not subscribe to the notion of HIV causing AIDS” and those who do subscribe to this “notion”. Interestingly, Duesberg – whose name popped up on my rough-and-ready Google search – was a member of the panel.
Predictably, the panel reached deadlock, and – in respect of key issues – made contradictory recommendations. For their part, the “panellists who do not subscribe to the causal linkage between HIV and AIDS” recommended the suspension of all HIV testing, as well as the suspension of “the dissemination of the psychologically destructive and false message that HIV infection is invariably fatal and assist in reducing the ‘hysteria’ around HIV and AIDS.”
A friend who wrote on health for a major national weekly at that time remembers reporting on the panel. Not one to mince her words, she describes it as Mbeki’s “assembly of nutcase dissidents dragged out from their crop circles and worm holes”. For months, she says, she was harangued by them for being a non-believer in their cause. “It was a very bleak period in South Africa’s history”, she writes, describing it as “[t]he start of the failure of compassion post 1994.”
Perhaps more disturbing is her recollection of having accompanied the late Dr Manto Tshabalala-Msimang, then the newly appointed health minister, and government officials on a visit to Uganda to learn about efforts to reduce HIV infection rates. In a piece written a little over a decade later, not long after Tshabalala-Msimang had died, she revisited that trip to Uganda, quoting from an article she had published in April 2000:
“It was a political triumph because it affirmed African strategies for dealing with the HIV/AIDS pandemic, and a personal triumph for the minister as it allowed her to carve out a role for the Department of Health in determining what course of action the government should take.
Her excitement and enthusiasm were palpable. She said then: ‘I was so excited after the first day, I phoned Brigitte [Mabandla, the Deputy Minister of Arts, Culture, Science and Technology], who was in the room next door, at 4am and said: We can do this. We can make it work.’”
The trip to Uganda took place in mid-1999; Mbeki’s address to the NCOP followed just a few months later.
I mention these events not in an attempt to disprove Mbeki’s version of history, but rather to provide just a glimpse into the toxic context within which public health policies and programmes were to be devised and implemented.
In my view, it does not matter whether there is anything substantively different between saying that HIV does not cause AIDS, and saying that a virus cannot cause a syndrome. What matters is whether there was a causal link between Mbeki’s views, and the state’s delay in developing and implementing ARV-based programmes to prevent and treat HIV infection.
For a period of ten years, starting in early 2002, I worked for the ALP (and then SECTION27). With a particular focus on access to medicines for preventing and treating HIV infection, I was part of a team that fought the good fight in various ways: such as using the law to reduce the costs of ARV medicines, because the state had no interest in doing so; compelling the department of health to procure ARV medicines so as to implement the treatment plan that TAC and its allies had forced the state to adopt; and getting the department of correctional services to comply with health policy and implement a treatment plan at Westville Correctional Centre.
At every step of the way, we encountered obstruction, obfuscation, and a willingness to use any and all legal processes to frustrate and delay. It was, without doubt, a war of attrition. We knew it, and they knew it. And I believe that they knew that we knew.
Even in smaller skirmishes, the same tactics were at play. In February 2004, for example, we requested access to certain documents to which the state’s ARV treatment plan, published just three months earlier, had referred. It was only months later, after we had jumped through all manner of hoops, including filing application papers to compel the health minister to make the documents available, that we received an answer: the references to the documents in the plan had been an error; no approved annexes existed.
This was not an isolated example.
In another relatively minor skirmish, also about access to information, the correctional services minister waited until filing his answering affidavit – seven months after the request for access had been made – to inform us that the document in question was not in his possession. That document was a report prepared by the then Inspecting Judge of Prisons into the death of an ALP client at Westville Correctional Centre. On the basis of an expert’s analysis of his medical file, we alleged that he had accessed ARV treatment too late.
In his judgment, Justice Southwood concluded that:
“the Minister’s denial that he received the report and any suggestion that the report was not received by the Department and is not in the Department’s possession cannot be accepted. It is so far-fetched and untenable that it must be rejected.”
The Minister was ordered to produce the report. We got it from the Inspecting Judge, who was authorised in the court order to release his copy.
In the bigger battles, not only did we have to deal with similar annoying tactics, but also elements of denialism, which popped up at regular intervals. The cases speak for themselves: the Constitutional Court decisions in the MTCT case; the High Court decision dealing with “Dr” Matthias Rath’s unauthorised clinical trials on vitamins; and attempts to prevent Sibongile Manana, then provincial health minister in Mpumalanga, from evicting a provider of post-exposure prophylaxis services for rape survivors from a public hospital.
Collectively, these cases provide some evidence to show that the state sought to do everything in its power to undermine the use of ARVs; the actions of Mbeki’s loyal foot soldiers were not simply limited to preventing the public provision of ARVs, at state expense. More had to be done. And it was. Those who advocated for their appropriate use were smeared; those who spoke out were sidelined. But those willing to do the denialists’ bidding, and the denialists themselves, were promoted and protected.
In 2005, for example, when Rath was peddling his vitamin remedies as an alternative to ARV treatment, and conducting his illegal trials, Mbeki’s health minister, Tshabalala-Msimang, defiantly stated that “Rath’s work complies with and complements our programmes.” In response to a parliamentary question asking whether she would publicly distance herself from Rath’s claims that AIDS could be cured by vitamins and that ARVs are poison, she said that she would only distance herself from him if it could “be demonstrated that the vitamin supplements that he [was] prescribing are poisonous for people infected with HIV.”
Later that year she invited two prominent AIDS denialists – Professor Sam Mhlongo and Dr David Rasnick – to address the National Health Council. Established under the National Health Act, the Council is made up of the minister and her deputy, provincial health ministers, and senior officials in the national and provincial departments of health, amongst others. It is required to play a central role in advising the health minister on health policy, legislation and research.
Rasnick, who is best known for his denialist views, had been a member of Mbeki’s international advisory panel. At the time of the presentation to the Council, Mhlongo was head of the illegal clinical trial being run by Rath’s foundation in Khayelitsha. Three years earlier, he had unsuccessfully sought to be admitted as a friend of the court in the MTCT case in the Constitutional Court. In his unsuccessful labour matter against Legal Aid, Brink claimed “that he had opposed the TAC in the case by way of an urgent amicus curiae application … which he drew for the late Professor Sam Mhlongo”.
Rasnick and Mhlongo had been invited to present their “findings” on the Khayelitsha trial to the National Health Council. Mhlongo, then a professor at the University of Limpopo’s Medunsa campus (now Sefako Makgatho Health Sciences University), had sought – but failed – to secure ethical approval for the study from his home institution. And after their 90-minute presentation, Rasnick is reported to have said that he had advised the Council that ARVs are “toxic and ineffective”.
Much more has been written on the topic. For example, there’s Nathan Geffen’s Debunking Delusions; and The Virus, Vitamins & Vegetables, edited by Kerry Cullinan and Anso Thom. There’s also The Deadly Hand of Denial: Governance and Politically-instigated AIDS Denialism in South Africa, published by the Centre for Social Science Research’s Aids and Society Research Unit at UCT, and authored by Geffen and Justice Edwin Cameron.
These publications, and others on the same topic, make for compelling reading. They also put beyond doubt that the former president’s personal views were translated into government practice. So whatever Mbeki thought, or said, or thought that he said, matters for nothing. He used his position to undermine an evidence-based response to the epidemic. And for that, nothing short of a sincere mea culpa will suffice. I’m not holding my breath.
Main photograph: Put that in your pipe and smoke it, TM – Thabo Mbeki at the 2008 World Economic Forum, courtesy of the WEF