Denying AIDS: Conspiracy Theories, Pseudoscience, and Human Tragedy

Seeking Stories of AIDS Denialism

Have you or someone you know been harmed by AIDS Denialism? If you, or someone you care about, have been advised to stop taking HIV meds, ignore HIV test results, purchase a 'natural' cure etc., please email me.

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Thursday, March 25, 2010

New Book by Nathan Geffen

Quackery taken to task
by Lesley Odendal

Nathan Geffen’s book Debunking Delusions reminds us what can go wrong when AIDS denialists are given the time of day. The book also documents clearly how we can fight denialism in a manner that saves lives and respects science. What is clear given the resurgence of AIDS denialist propaganda is that now is not the time to sit back.

As Geffen argues in his book, underlying the Treatment Action Campaign’s success in fighting denialism and quackery was the almost unsung treatment education programme. Knowledge truly is power in this case.

AIDS denialism reached its peak in the public arena in the late nineties and early 2000s when Thabo Mbeki consulted a number of AIDS denialistson his AIDS panel to advise him on AIDS policy. The public believed that the debate was over when Mbeki ‘withdrew’ from the debate, claiming that he never stated that HIV did not cause AIDS and when in 2003 antiretroviral (ARVs) began to be rolled out at a national scale to HIV-infected people. The struggle between the many players, including Mbeki, then Minister of Health Manto Tshablala-Msimang, the Treatment Action Campaign, clinicians, the international scientific community and the many denialists benefiting from, and supporting, Mbeki’s policies such as Duesberg, Anthony Brink, the Visser family and the numerous quacks in tow, received much media attention and mass mobilization.

In 2010, one may ask, what is the significance of AIDS denialism today? For most lay people, the debate is settled and the evidence is clear: HIV causes AIDS; ARVs are the best and only treatment for HIV; Mbeki’s AIDS policies caused thousands of unnecessary deaths and HIV-infections and thousands of peer-reviewed articles have been written regarding the effects of HIV on the body.

Unfortunately, the denialists are not ready to give up. Despite the numerous rebuttals against their claims and the plethora of evidence that exists against them, there has been a recent surge in denialist material that has been circulating both in the mass media in the form of the documentaryHouse of Numbers and the infamous AIDS denialist Peter Deusberg’s (who was also on Mbeki’s panel) article in the non-peer reviewed journal Medical Hypothesis. Medical Hypothesis as not being peer reviewed and scandals around that

AIDS denialists usually support at least one of the following hypothesis:
  1. HIV does not exist
  2. HIV tests do not in detect the presence of HIV
  3. Following from this, HIV prevalence is highly overestimated
  4. HIV does exist but it is not harmless
  5. HIV is not sexually transmitted
  6. AIDS is caused by other factors such as poverty, malnutrition or ARVs themselves
  7. ARVs are toxic and often fatal and cannot prevent the vertical transmission of HIV
  8. AIDS should be treated by an extensive range of alternative remedies such as herbal concoctions, vegetables, vitamins or bizarre treatments such as ozone rectal therapy

Pride Chigwedere of the Harvard School of Public Health eloquently and passionately refutes many of these claims and the amount of words spent on deconstructing the claims of denialists is unprecedented in academia. However, what is evident and a hallmark of AIDS denialist argument is that despite any proven evidence that is thrown against them, AIDS denialists do not take this into account for developing their arguments and instead sway the debate in another direction. For them, the evidence is incorrect and they are misunderstood as the last renegades of the truth. This makes it very difficult to engage in anti-denialist debates— academics, scientists, activists and clinicians grow tired of arguing with those who do not take reason into account and who do not respect the essential tenant of science— proven evidence—and prefer to focus on their core work which is to create and disseminate more evidence to the benefit of our understanding of HIV. As Nattrass states, “the problem [of not accepting evidence] is far more than intellectual because disregarding evidence not only undermines scientific progress, but it threatens the social basis which makes such progress possible.”

More worrying, is that where the evidence suits them, AIDS denialists misrepresent data or use the incorrect data to support their arguments. In Duesberg’s article for instance, he uses the incorrect epidemiological data that misclassifies causes of death in South Africa to support his thesis that AIDS is not killing as many people as it is widely estimated by scientists across the world. Duesberg uses the Statistics South Africa Findings from Death Notification to argue that AIDS-related deaths are much lower than that postulated by Chigwedere’s 2008 article. However, it is a common fact, that due to AIDS stigma, AIDS is rarely stated as the reason for death. Up to 60% of HIV deaths are misclassified.

Duesberg also refutes the  claim that ARVs are effective at preventing vertical transmission of HIV. He does not quote the numerous randomised control trials that prove that ARVs do decrease the vertical transmission down to between 3 and 5 % when properly administered, but instead examines the history of the production of AZT, one of he drugs used in this prevention strategy.

In the newly aired House of Numbers documentary, denialist views are supported by interviewing respected scientists and distorting their views in a clever concert of manipulation. The public is further shown as erratic sheep who merely carry mainstream HIV because that’s what ‘they’, the scientists said. The definition of HIV and AIDS is painted as unclear with the claim that there is confusion as to what the more than thirty-year old disease, AIDS is. The effectiveness of HIV rapid-tests are questioned in a most irresponsible manner. HIV counsellors in South Africa explain at length what the limitations of rapid testing are and why it is necessary to conduct follow-up testing. At no point is the practical or economic convenience of rapid testing explained, nor is there mention of the gold standard test PCR HIV test which instead of searching for HIV antibodies, identifies HIV DNA in the person’s blood.

The causes of AIDS are debated at length as if the evidence has not been around for decades— HIV as being caused by ‘lifestyle’ drugs and choices such as Poppers, being homosexual, or by co-factors such as poverty and malnutrition. People living with HIV are depicted as highly-emotional sufferers who do not have an option to take life-saving medication and at no point are any people who are managing their lives well on ARVs interviewed. Instead, a baby who was clearly suffering from a very common ARV side effect, plural neuropathy, is depicted as being cured of the ailment once she is off the drug. Other patients are described as having died of hepatoxicity from Nevirapine. At no point is it explained that these side effects are well known and well documented and that every countries ARV guidelines takes these into account in the prescription of ARVs.

Just as Duesberg does, House of Numbers is another example of selective use of evidence. The consequences of this kind of conspiracy theory manipulation of evidence can be far reaching as can be witnessed in South Africa’s tragic AIDS policy of the past. House of Numbers is currently being screened at film festivals around the world. Like all other AIDS denialism, there are dire consequences to this kind of portrayal of evidence.

AIDS denialism allows for deadly consequences. Firstly, it allows people living with HIV an escape— a far too easy route into personal denial that facilitates a process of withholding treatment from oneself and taking the necessary steps to ensure a healthy future. Stemming from this, AIDS denialism allows for quackery in all forms to persist. This allows for unfounded treatments to be sold to people at high costs to cure them of their HIV, as has been tragically witnessed in so many individuals across the world. This is what resulted in the deaths of an immeasurable amount of people across the world, as ARVs are distrusted, as is the institution of scientific evidence. More than quackery, there is a current wave of religious leaders who are encouraging people to stop taking their ARVs as only their faith can heal them.

AIDS denialism, when lent a powerful policy ear, as was the case with the Mbeki administration, allows for the systematic erosion of the scientific governance of medicine. This has far reaching consequences— for example the Medical Control Council (MCC) is practically defunct due to Mbeki’s consistent disregard for scientific evidence. It can result in delaying life-saving treatment to entire nations.

Most importantly, denialism results in death. Unnecessary, painful death. It can be genocide. And it is for that reason that the activists and scientists should not stop fighting AIDS denialism. This should not only be on blogs and in academic journals—most importantly, it should be in the public. HIV Treatment Literacy (TL) is our most powerful tool in this. It is about making science accessible to the masses— even those who do not have any form of education. There are numerous groups who have shown the success of this approach. At any time one can walk into any clinic in Khayelitsha and hear TAC activists, many with no formal education, educating patients about their disease and its treatment. This is the power of TL and anti-denialists strongest weapon in essence given the fact that the denialists themselves are failing to listen.

At the book launch of Debunking Denialism, Andile Madondile, a TAC TL educator, who had indulged in quack remedies for his HIV when his CD 4 was only 9, spoke honestly of the effect that treatment literacy had on him “The comrades at TAC saved my life. They made me realise that ARVs were the only way that I was going to overcome this disease. It is the reason I am alive and well today.”

The denialists appear to be making a comeback. The sad and worrying truth is that they were never gone. The issue at stake here is that due to their easy access to money, resources, publicity, journals which are not peer reviewed and internet, their message will continue to be heard by the masses, who do not necessarily have an understanding of how science works or the myriad of AIDS data. It is this which needs to be stopped in its tracks. Even if governments are clear on the causes and treatment of HIV, at an individual level there is a different story, and this is where our efforts should be targeted. Nathan Geffen’s book Debunking Delusions comes at a time when we need to fight for truth again.

Lesley Odendal is currently completing her Masters in Public Health. She worked at the Treatment Action Campaign in 2008 and 2009.

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