AN AIDS DISSIDENT IN THE ANTIRETROVIRAL TREATMENT SHOP

By David Crowe

How did I, an AIDS dissident who questions the existence of HIV, end up on a panel writing a position paper on African health destined for G8 leaders surrounded by people who feel that access to antiretroviral treatment is one of the major current healthcare challenges? People that feel that the major issue is, who should pay for the medicines, and not whether they are safe and effective.

High level international economic conferences such as the G8 have been tarnished by battles between police and anti-globalization demonstrators ever since the Canadian RCMP pepper-sprayed peaceful demonstrators at an APEC (Asia Pacific Economic Council) meeting held in Vancouver in November 1997. This police action apparently occurred when the leader of a democratic country (Jean Chretien, Prime Minister of Canada) decided that he did not want the since deposed dictator of Indonesia (Suharto) to be embarrassed by noisy protestors with signs.

This year, one of the major conferences on the international circuit frequented by top politicians is the G8 summit, being held in the wilderness area of Kananaskis, an hour’s drive west of Calgary beneath the summits of the Rocky Mountains. G8 claims to represent 8 of the world’s most economically powerful countries — the USA, Great Britain, France, Germany, Japan, Canada, Italy and, for good measure, Russia.

In response to this, activists set up the G6B conference in Calgary for the preceding week, named to represent the 6 Billion people outside the G8 countries. The aim is to have alternative discussions and produce position papers that can be submitted to the G8 leaders just before their conference. Other activists may wait until next week to demonstrate (or riot) in Calgary and the brave and foolhardy may even try to sneak through the $500 million security perimeter around Kananaskis protected by (reportedly) 5,000 soliders and hundreds of police.

When I heard about G6B, being held a few minutes from my home in Calgary, I felt duty-bound to try to get a truly radical perspective on the agenda. I immediately contacted the organizer, Dr. Saren Azer of Edmonton and offered to give an alternative talk on HIV/AIDS. After explaining my position in considerable detail, and indicating how it would be diametrically opposed to that of most Third World activists, he suggested that as there was only to be one speaker on HIV/AIDS he would consider me for the group writing a position paper. I submitted my resume, including a list of the technical letters I have had published in major medical journals (e.g. Lancet, JAMA, BMJ, AIDS). I was quite surprised when I was accepted onto the panel, along with several infectious disease specialists, representatives of AIDS service organizations and a top level official from Medecins sans Frontier (MSF).

Once the members of the panel discovered my position, there was some consternation. Two members suggested that it might be best if I left. One, ironically, was Dr. Azer, who had perhaps not been listening when I had explained to him how radical my position was. The other members of the panel obviously felt uncomfortable with my presence at times, but did treat me in a very civilized fashion, allowing me a short time to introduce my views.

A draft position paper was circulated ahead of time, allowing me time to prepare an alternative position paper for the meeting that emphasized a number of problems with the ‘money from North to South to pay for drugs into bodies’ approach advocated by the draft paper. It emphasized:

1. The lack of a ‘gold standard’ for validation of HIV tests (i.e. purification followed by characterization).
2. The possibility of even more false positive tests in Africa than elsewhere.
3. The vague definition of AIDS in Africa (Bangui) that allows a diagnosis based on persistent fever, cough, diarrhea and weight loss (>10%).
4. The toxicity of antiretroviral medications, especially AZT and Nevirapine.
5. The use of formula feeding to prevent mother-to-child transmission.
6. The possibility that much of the ill health in Africa is due to poverty and malnutrition, not an exotic new virus.

When the other members were proposing text for the position paper or presenting at a session on Health Care in Africa, I was frustrated by the lack of things I could attack. Not because I agreed with their positions, but due to the vagueness of their demands. Who could be opposed to the statement that "Access to Health Care is a Human Right"? But, does Health Care include adequate and balanced food, clean water and sanitary living conditions? I am opposed to the use of antiretroviral drugs for HIV, but vague motherhood statements are very hard to attack even if, beneath the rhetoric lie concepts that may be highly questionable. Agreeing that the Third World debt should be cancelled was almost the password to the conference. But, is it going to do any good if the money immediately flows out of the country in drug company profits, particularly if it leaves the populace less healthy than before they took their pills?

My attempts to introduce more specific topics, such as the dangers of Nevirapine or the threat HIV/AIDS poses to breastfeeding in the presence of HIV, were rebuffed. They were considered far too detailed for the broad sweeping statements that the group preferred.

I did manage to introduce one of my concerns, the use of Nevirapine in pregnant women, at the question period after the Health session. I did get the distinct feeling that, once I moved to the short queue by the microphone, that the chairman was trying to run out the clock. But, eventually I could see his sense of fair play rise to the surface and he invited me to present my question.

I pointed out that Nevirapine has been associated with severe liver, skin and hypersensitivity disorders, with fatalities in some cases. The CDC warned, in the January 2001 MMWR about the use of this drug for healthcare workers with needle-stick injuries. An application for its use by pregnant women in the United States had recently been withdrawn by the manufacturer because of disputes over the definition of ‘serious adverse reaction’ in the only trial of this protocol in Uganda. However, based on this trial it was being heavily promoted in Africa, and had recently been declared an essential medicine by the World Health Organization. In fact, the Treatment Action Campaign in South Africa has taken its government to court to force it to provide this drug. This study, even though it was for only a single dose of Nevirapine to the mother and a single dose to the baby, showed a significant level of adverse effects (20% in both mothers and babies), and 6% of the babies died. 80% of the mothers had clinical or laboratory abnormalities. The trial was declared a success because these rates were not significantly different from the other treatment arm (AZT). But, without a placebo, we cannot tell if these mothers were already very sick, or if two very toxic drugs are being compared. Furthermore, the dispute over the definition of adverse reactions in this trial has never been clarified.

After this preamble, I asked whether we were risking a potential drug-induced tragedy of the scale of Thalidomide (or, with the number of people involved, perhaps significantly greater). The answers were not very revealing. Dr. Waters, an infectious disease specialists from the University of Alberta noted he had used Nevirapine on several patients, that the fatal side effects had never been observed in the single pill regimens used to reduce mother-to-child transmission, and that my ‘numbers’ seemed very high. But, these numbers are straight from the Lancet paper. Dr. Orbinski a high official with MSF commented that there is a balance of risks and that in a situation with a low risk (e.g. health care workers pricked with a needle) the drug might not be considered safe, but in a high risk situation it might be. There was not time to argue that a risk assessment can hardly be performed on one trial without even a placebo, so that even the short term benefit/risk tradeoff cannot be assessed.

Many things are resolved over a beer. Our second effort to draft the paper was delayed by the health session, and so participants retired to a restaurant for what was supposed to be a working session but, like most such attempts, ended up being a multitude of open discussions while people ate and drank and, to the extent possible with me present, let down their hair.

Clementine Dehwe, a Zimbabwean trade union activist had noted in the Health Session that many people in her country view antiretroviral medications with some skepticism, being worried about being guinea pigs in a grand experiment that might go awry. She also agreed that providing drugs to poverty stricken people should be secondary to bringing their living conditions up to a humane level, even if the drugs are proven effective.

Adelaide de Broize, who works with South African NGOs seemed quite shocked by my position, but did tell me that most of the HIV-positive people she knew were healthy and had not taken antiretroviral medications. But still, she felt that these drugs were essential. I felt that perhaps it was partly the feeling that if rich countries have them, poor countries should have them too. Perhaps partly, she also felt that these people were living on borrowed time.

Solly Benatar, a South African bioethicist, was quite interested in my position, but I felt that this was more from a perspective of "My, this is a strange species that I have never encountered before". His writings have been strongly supportive of the HIV/AIDS dogma, and highly critical of South Africa’s President Thabo Mbeki, who has questioned the link between HIV and AIDS.

Several people accepted copies of Christine Maggiore’s book "What if everything you thought you knew about AIDS was wrong?" And a couple even took the much more technical "Mother to child transmission of HIV and its prevention with AZT and Nevirapine" by the ‘Perth Group,’ a wide-ranging analysis of HIV tests, particularly in the context of mother-to child transmission of HIV. This book is, in fact, a detailed critique of the existence of HIV. At least now MSF cannot plead ignorance, although I do not expect an overnight change in their policies.

In the end, writing the position paper proved to be an incredibly difficult task, even for the other members of the group who agreed on all the fundamental issues. I ended up with two choices — fight for my position, get over-ruled or even kicked out and only drag the meeting out for many hours, generate enormous antagonism and completely destroy my weekend with my family. I decided instead to request that my critique be given to the G6B leadership as a dissenting opinion and go home to the warm embrace of my family (well, just in time for a few hands of poker with my daughters). I know that my paper will not be part of the package forwarded to the G8 leadership. But, I also know that what will be forwarded will just be a list of motherhood statements. Yes, they will make statements about HIV/AIDS and drugs that I virulently disagree with. But, at least I can say that a few more people are at least vaguely aware that not everyone is happy with the HIV=AIDS=Death theory. And, perhaps by thinking about my position, visiting my society’s website (www.aras.ab.ca) or reading the books I provided, they may eventually change their mind.