UDO SCHUEKLENK is a member of an international group of biomedical scientists, gay activists and persons with AIDS. The policy statement of the group reads: "It is widely believed by the general public that a retrovirus called HIV causes the group of diseases called AIDS. Many biomedical scientists now question this hypothesis. We propose that a thorough reappraisal of the existing evidence for and against this hypothesis be conducted by a suitable independent group. We further propose that critical epidemiological studies be devised and undertaken." Here, he takes up another aspect of the AIDS debate.
I am an HIV agnostic. I haven't seen any scientific paper which would convince me that HIV causes the immunodeficiency which is called AIDS.
This view is shared by such prominent biomedical luminaries as Walter Gilbert, Nobel prize laureate, Kary Mullis, the inventor of the polymerase chain reaction which is today widely used in HIV testing, and Peter Duesberg, a Berkeley university professor of molecular and cell biology. It has a number of important implications when it comes to AIDS prevention and policy, but also when it come to the question of AIDS treatment options and the design of clinical trials with persons with AIDS (PWA). But the purpose of this article is not to convince you that AIDS is not caused by HIV.
When I arrived in Australia about a year ago, a testing campaign was being promoted by the Australian Federation of AIDS Organisations (AFAO) and state AIDS Councils. This campaign has been heavily supported by gay magazines such as Outrage through its AIDS writer, Adam Carr.
Carr argued for mandatory HIV testing in the gay community under certain circumstances, among them that "there was a treatment which clearly stopped progression to AIDS, and which was time-linked in the sense that early detection of infection was essential". It would seem prudent for a person at risk for AIDS diseases to get tested on the basis of the premise that the so-called HIV test gives evidence of HIV infection (a recent review paper has evaluated the quality of the existing test kits; it basically concludes that there is no such thing as an HIV test. See BioTechnology 1993; 11(6): 696-707), and on the basis of the premise that HIV causes AIDS.
Paternalistic habits such as Carr's are common in Australian AIDS organisations as well. They force their own values upon the gay communities through high-level test campaigns which ignore the fact that most gay men have already decided whether or not to get tested.
For more than a year, Outrage ran a high-level campaign to convince persons (without any AIDS symptoms) to go on AZT if they test positive.
AZT is a nucleoside analogue which is supposed to inhibit the replication of HIV. The problem is, AZT stops any cell it can reach from replicating. Human beings can survive cell death only to a certain degree.
The hallmark of AIDS is a dramatic decrease in the number of CD4 and CD8 cells (t-lymphocytes) which are thought to be responsible for our immune reaction. Even in persons with AIDS, HIV never infects more than one in 10,000 of these cells which it is supposed to kill one way or another (nobody has a clue yet how HIV does this wonder). This implies that AZT has the chance to kill 9999 t-lymphocytes before it kills one HI Virus. AZT is a more efficient killer of our t-cells than HIV could ever be. This is called a high toxicity index in pharmacy.
Outrage's (or Carr's) campaign for AZT was based on research which led to the approval of AZT as an AIDS therapeutic by the US Food and Drug Administration (FDA). Carr claimed in Outrage that this drug doubles the life expectancy of PWAs. Meanwhile this research has been more thoroughly evaluated, and the FDA has recently concluded that these trials were "based knowingly on irregularities in reporting of adverse reactions". (Lancet 1992;339: 1105-6)
One would have expected gay journalists to inform the group at high risk for AIDS diseases in Australia (which is a sub-population of the gay male communities) about these developments. They didn't. Instead Outrage and the Melbourne Star Observer (controlled by the same people and publishing house) ran full-page advertisements for AZT, generously sponsored by Burroughs Wellcome, the pharmaceutical company which manufactures AZT. Meanwhile, new research data has been published.
A study in the Journal of Infectious Diseases mentioned that AZT accelerated the outbreak of AIDS, and several papers in the Annals of Internal Medicine in 1993 discussed the immunosuppressive effects of this drug. Recently, the largest and longest-running AZT trial, the so-called (European) Concorde study, concluded in the medical journal Lancet, that there is no difference in the clinical outcome between the placebo and AZT. John Hamilton and colleagues concluded their AZT study (as reported in the New England Journal of Medicine): "it did not improve survival, and it was associated with more side effects".
This did not come as a big surprise for heretics like me who have criticised AZT for years because of its devastating effects to the immune system. A study in the Journal of Clinical Investigation showed in 1991 that AZT inhibits the proliferation of lymphocytes. Gay men with AIDS in Australia could not read unbiased information about these studies, because Carr and friends were on their crusade to convince them to go on AZT. He wrote: "We have been very free in recent years in calling people who obstruct the access of people with HIV/AIDS to treatments as 'murderers' ... I am not sure what term I would use for people who deliberately spread misinformation about AZT to people who should be taking it, but it wouldn't be complimentary."
A letter to the editor of Outrage in which I tried to present the other (not so nice) side of AZT has not been printed, and I have been called paranoid by the then editor. My report about this kind of censorship in the Manhattan-based People with AIDS Coalition's publication Newsline led a representative of the Victorian AIDS Council to ask my university to cancel by research grant, and to threaten legal action.
Of course, after I went to a lawyer, I learned that they wouldn't try anything, because they could only lose in court. This was another attempt to suppress minority views and harass those who hold them. Undoubtedly well-intentioned health care Stalinism at its worst!
One unwritten law in the gay community is that no dispute will be fought outside our own papers or discussion groups. This is why I utilised the US paper, because I had been denied access to Australian gay magazines. The AIDS Council's reaction was in clear breach of this rule when they complained officially to my supervisor — luckily he supports freedom of speech, and backed me, despite me being criticised by the "politically correct".
Wellcome is a pharmaceutical company which has not only produced (and sold to the AIDS community) poisonous drugs such as AZT; it is also responsible for distributing confusing information about its side effects. This confusing information has been severely criticised in an editorial comment in the New Scientist in August 1993.
Does AZT delay the onset of AIDS? The strongest study so far, known as Concorde, says it does not. Does it prolong the life expectancy of a PWA? Certainly not. The New Scientist editorial continues, comparing an Australian study with the Concorde: "The acid test of a drug trial is whether it changes doctors' practice. Concorde has done so: a panel of independent scientists in the US has just tightened the recommendations for who should receive zidovudine, effectively reducing the number of patients who will take it in the future."
The Australian study — criticised by Concorde's chairperson Ian Weller as aiming "more at raising sales than knowledge" — was sponsored by Wellcome ("our" AIDS organisations' new sponsor). The panel did not consider the Australian study's findings important enough to change its recommendations for treatment. Wellcome, however, has used this study for an unethical marketing strategy, desperately trying to convince more, perfectly healthy, gay men with a positive test result to jump on the AZT train.
Burroughs Wellcome has implemented an interesting marketing strategy for its AIDS drug. It gives money to the groups and institutions which it believes will help in selling AZT to gay men with an HIV-positive test result or AIDS, and which have more credibility than its own advertising campaign. It runs full-page advertisements in gay papers.
There is nothing new about Wellcome buying itself influence on the policies (and even campaigns of) self-declared community-based organisations. Wellcome even pays for staff members of AIDS organisations. Wellcome sponsors staff members of Project Inform in the US (its director Martin Delany was — not surprisingly — a featured speaker at a conference of Australian AIDS organisations which took place earlier this year), of the Deutsche AIDS Hilfe in Germany (comparable to the AFAO), and other community organisations.
When information about irregularities in the reporting of adverse reactions after the application of AZT leaked to the media, the company sponsored ACT UP New York to the tune of US$1 million.
The problem with Australian AIDS organisations and most gay papers is, in my view, that they collaborate too closely with biomedical scientists who have vested interests in certain hypotheses or treatment options. Unfortunately, Australian AIDS activists have chosen a strategy of collaboration with scientists running clinical trials such as that criticised by Weller.
The same is true for the mass media. The news about the above-mentioned review paper with the devastating results for the so-called HIV test hit in Europe in July and August this year. The covers of major papers such as the London Sunday Times or Die Woche in Germany, and the Australian mainstream newspapers again demonstrated how simple it is to suppress information which doesn't fit into the "baby talk stories about AIDS" (as John Maddox, the editor of the leading biomedical journal Nature, called it).
Reports by major European and US papers and TV documentaries about holes in this baby talk story have meanwhile led PWAs in the US to take Wellcome to court, and to the founding of groups like "Positively Healthy" in London. The number of reports in Australian gay/AIDS or mainstream papers is close to zero.
I would wish Australian AIDS activists (between flights to international conferences) to start contemplating how to open their structures to minority views such as those mentioned above. Otherwise they end up having put all their bets on the wrong horse (e.g. AZT) and run into the problem of how to adjust to the empirical realities we have to face right now.
Outrage has started recently adding articles on AZT written by others than Adam Carr which seem to be more realistic than his wishful thinking. The general problem is that very few people in Australia's AIDS business control what's getting published in community papers as well as major newspapers, TV and radio programs. This should be a worry even for people without AIDS.
[The author is currently a PhD student at the Monash University Centre for Human Bioethics. His papers have been published in the Medical Journal of Australia, the Australian Journal of Public Health, Bioethics News, the People with Aids Coalition Newsline (New York City) and The Encyclopedia of Homosexuality. His papers have always been rejected by Outrage and the Melbourne Star Observer.]