Tuesday, December 23, 2014

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Mbeki's AIDS Denialism

Thabo Mbeki’s support of dissident HIV/AIDS scientists is a cautionary tale for policy makers dealing with competing sets of evidence.
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At the beginning 1999, 6 million South Africans were reported as HIV positive - around 15% of the then population. Later that year, South African President Thabo Mbeki would declare his support for the so-called “dissident” HIV/AIDS scientists, a group which had opposed the mainstream position on HIV and AIDS. Mbeki would make two statements based on this group’s research: that HIV does not necessarily cause AIDS, and that ARVs (antiretrovirals) are toxic. This stance would become the cornerstone of a much decried policy that denied important truths about HIV and AIDS.

The impact of this policy was severe, both in terms of avoidable loss of life and the long-term damage to HIV/AIDS education efforts in South Africa - in 2008, researchers at Harvard University put the potential deaths caused by Mbeki's stance at 300,000. ARVs were made unavailable to patients in state clinics and hospitals, whether rape survivors, HIV positive mothers or health care workers who had accidentally been exposed to the virus. South Africa’s medical profession and AIDS charities were dismayed; the struggle to raise awareness on this crucial issue was being impacted by a culture of misinformation and denial.

Mbeki’s epistemic mistake

How should policymakers deal with competing sets of evidence from the natural, social and medical sciences? Ward Jones, a South African philosopher, addresses this question in his paper ‘Dissident Versus Loyalist: Which Scientists Should We Trust?’ He outlines how and why Mbeki made such an epistemic mistake in following the findings of a scientific minority.

The process by which an idea becomes accepted into mainstream thought involves substantial checks on the proposed subject matter. The process of “peer review”, which verifies scientific articles before validating them, is particularly important: an article due for publication goes to reviewers who check it for methodological flaws and reassess the coherence of the proposed argument. Once an article has been published it can be critiqued by the scientific community and experiments may be repeated to see if the same results can be recreated, especially in instances where the published results are unexpected.

However, policymakers rarely come from a scientific background, making them ill-equipped to challenge new medical discoveries or participate in broader debates. As a policymaker, Mbeki had a responsibility to base policies on findings that had been verified by the medical community. His policies on HIV and AIDS negligently accepted the findings of a dissident minority that had been largely discredited by the wider medical community.

In such policymaking situations, it is important not to equate popular belief with the principle of truth and to continually challenge accepted beliefs. Nonetheless, AIDS is a global problem that receives a huge amount attention and has a healthy culture of debate at its heart. Mbeki thus had a responsibility to his electorate not to base his policies on a school of thought that had not been examined or validated by the larger medical community.

The scientific debate and public policy link

The Mbeki scenario demonstrates the importance of a means for assessing debate within the scientific community, especially on issues such as HIV where invalidated conclusions can lead to disastrous policies and, ultimately, the loss of human life.

The Mbeki example is one in which the mainstream view within the scientific community was ignored. The lesson we might take from this, therefore, is that policymakers would be best to follow the mainstream scientific consensus. But this conclusion seems counterintuitive, since we want to be guided by the best science, not just the most popular. In other words, we want to look at which view has the best evidence supporting it, rather than the most people supporting it.

Alvin Goldman, a philosopher at Rutgers University, illustrates the point when he asks us to imagine a guru whose followers slavishly accept whatever beliefs he or she holds. In this case, just because more individuals accept a position it does not make it more credible.

However, we understand scientific analysis to be based on assessment of evidence rather than popularity. The scientific community is therefore less likely to fall prey to the extreme dependence that the guru example describes. Perhaps, therefore, a majority opinion within a scientific community can be taken to evidence a better theory rather than just a theory backed by a better PR team – because each scientist is making an independent judgement based on evidence. This would justify making policy decisions on the basis of scientific theories being mainstream. However, it is possible that independence in the scientific community can also be compromised.

Scientific projects are now far more collaborative. They are typically run in large research groups, with sections of the project apportioned to individuals or sub-groups. One example is the discovery of the “top quark” in 1994, which was credited to 450 physicists, each of whom had worked on some portion of the research project. Evidence suggests that the process of working in such tight collectives is likely to have a homogenising effect on the beliefs of individual scientists, making them more closely resemble those of the group. Although not on the same scale as Goldman’s example, this does show how popular support for a scientific theory can be greater than the evidence warrants.

Secondly, even if individual scientists are able to resist the homogenising effects of group work, there may be a bias in popular opinion created by limitations in areas such as data collection. For instance, there are a limited number of devices measuring temperatures out at sea. It is thus unsurprising that scientists relying on this data unsurprisingly come to similar conclusions.

This shows that taking the mainstream opinion may also have flaws. However, policymakers themselves remain ill-equipped to assess scientific disputes. Therefore, despite these reservations, mainstream science still provides a more credible option than just picking one particular group of scientists and hoping that they are right.

Is correct policy enough?

Botswana, South Africa’s neighbour and a country with the second highest adult HIV prevalence in the world – after Swaziland - declared that ARVs would be freely available to all who needed them in 2001. The programme was well publicised and the ARV roll-out went forward smoothly. However, by 2003 only about 15,000 people had taken advantage of the programme and received treatment. Making ARVs available to the population was a step in the right direction, but the government did little to raise awareness of the benefits of this treatment and combat stigma about an unknown medicine.

Jonny Steinberg’s popular Three Letter Plague investigates whether the same problem occurred in South Africa after ARVs finally became available in August this year. He discovered during the course of his research that both fear of stigma and scepticism toward Western medicine has prevented many from seeking treatment, even if they live within close proximity of clinics distributing ARVs.

If government policies are to have any effect on the AIDS pandemic, they must not only provide populations with the necessary treatments, but also sufficient knowledge and education. Mbeki’s culture of denial has not only deprived South Africans of the necessary treatments for HIV and AIDS, but also propagated an ignorance that is in itself highly damaging.

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Comments

Greetings,In 2007 I received an invitation from the S A Human Rights commission to make a submission. This I did, & I attended. I was asked to forward my proposay to the govenrment, which I did. Three ministers responded, and there was communication. I was asked to Invite World Health Organisation to investigate a possible discrepency in HIV incidence ( 200 000 per year reported and 600 000 per year suggested by A Puren & O Shisana).I accepted the quest, flew to Switzerland, & invited WHO on behalf of the S A government, to investigate. Who accepted, & published their report in the "The Lancet" 2009: first issue.The Cabinet was obliged to accept the acting Health Minister's advice. Thus minister Manto Tshabala was primarily responsible for "AIDS denialism"; not President Mbeki, who agreed that I approach WHO to investigate.The facts are thus misrepresented. You owe former President Mbeki an apology. I have the letters to prove this.Dr G Levin [BSc(hons), MBBCh, PDM, PEPFAR fellow2010, AHMP (FDY-Yale)]