HIV: A RED HERRING? AIDS dissidents wage lonely battle

By Sky Gilbert

The Globe and Mail 13 Oct. 1998

For years, medical skeptics, including a Nobel prize winner, have questioned the orthodoxy that HIV causes AIDS. Now they're organizing.

Toronto -- The images linked to AIDS have changed over the years. In the early part of the pandemic, we mostly saw the emaciated bodies of those labeled its "victims." In the late 1980s -- thanks to the media-conscious activists of ACT UP -- we began to associate AIDS with the shorn heads of angry demonstrators, who demanded better research and quicker approval of treatments.

The new image of AIDS activism is less easy to stereotype. A bookstore owner and a baroque singer are among the leaders of a new breed who call themselves "AIDS dissidents." They may not look as radical, but they are no less persistent or passionate than their predecessors, and they are challenging the scientific thesis of HIV infection. HEAL (Health Education AIDS Liaison), which now has branches in Toronto and Vancouver, thinks that HIV itself is not the cause of AIDS, and that prescription and non-prescription drugs are actually more often to blame.

HEAL is one of several groups in Canada and around the world that have in common a deep disillusionment with the medical establishment. They're asking questions: Is it possible that HIV doesn't cause AIDS, at least not by itself? Could syphilis or drug abuse be necessary co-factors? While many researchers dismiss this as outlandish mumbo-jumbo, support is growing among professionals and non-professionals alike, from Nobel prize winner Kary Mullis to a very stubborn co-owner of Toronto's Glad Day bookstore named John Scythes.

HEAL is the newest group of AIDS dissidents to burst forth on the Canadian scene, claiming 500 supporters in Toronto and Vancouver combined, and at least 10,000 worldwide. HEAL Toronto was the brainchild of Carl Strygg, an internationally renowned countertenor, who founded the Toronto group in 1997. HEAL Toronto does not enjoy the support of other Toronto AIDS service organizations. It has been denied access to the 519 Church Street Community Centre, normally accessible to community AIDS support services. "Their messages can come across in a way that seems to say you don't need to use safer sex anymore," explained Joan Anderson, Director of Education at the AIDS Committee of Toronto.

Not true, responded Strygg. "As soon as one challenges the HIV paradigm, people assume that 'safe' does not need to be a part of the equation. But we have never said that safe sex isn't important." The Canadian HEAL chapters are only one part of an international organization with arms in the U.S. and Europe, which began in New York City in 1983, at the very start of the AIDS crisis. Originally headed by Dr. Michael Ellner, it offered patient support and holistic-therapy advice. Its focus changed after Ellner accused Dr. Robert Gallo, the much-acclaimed American researcher credited with the HIV thesis, of publishing unverifiable data based on incomplete research.

According to Ellner and other scientists -- some of whom made a satellite presentation during June's World AIDS Conference in Geneva -- the HIV virus has never been satisfactorily isolated. "Everything about AIDS is about isolation except HIV," Ellner said, referring sarcastically to issues of estrangement and quarantine surrounding the illness.

If the dissidents are right that HIV is a red herring, then pricey, powerful drugs that attack HIV could be doing people with AIDS more harm than good. For that reason, HEAL focuses on challenging the drug companies, whom they feel are making mountains of money from hapless victims of the medical establishment. One of the group's posters simply reproduces an actual label from an AZT bottle, which features a skull-and- crossbones logo, indicating the acknowledged toxicity of Azidothymidine, the purported magic bullet of AIDS treatments.

HEAL and other critics point to the Concorde Trial of 1993, one of the few international drug trials of AZT not funded directly by the drug's manufacturer, in which the mortality rate was 25 per cent higher for those taking AZT than for those who weren't. Afterwards, there were rumours that some AIDS patients committed suicide when their supposed lifesaver's credibility undermined.

Then the 1996 World Aids Conference in Vancouver saw the fanfare for a new class of drugs called protease inhibitors, which target the way HIV replicates itself in the body. Stories of AIDS patients who literally rose from their deathbeds -- "the Lazarus effect" -- became legendary, and many doctors now agree that the new drugs -- combined with AZT, and often referred to as "the cocktail" -- can indeed perform miracles. But by this year's Geneva conference, doubts were rising again. Some doctors argued that the cocktail -- up to 30 precisely timed pills a day -- is too difficult to take and that the side effects, including physical deformities, are beyond endurance.

Such contradictions caused Carl Strygg to become a dissident, after he felt a friend's medical care had gone gravely awry: "John [not his real name] was an alcoholic diagnosed with HIV who went to the hospital with severe liver problems. They convinced him to go on AZT. He was dead within a couple of months. How do you justify putting a person on chemotherapy when [his] liver is already severely damaged? He went into the hospital an alcoholic, and came out dead."

One scientific heavyweight who has come out in support of HEAL is Nobel prize-winning biochemist Dr. Kary Mullis, who invented the technology now used to measure quantities of HIV in the body. Opinions about Mullis are as mixed as opinions about HEAL. He is famous for taking intellectual risks, sometimes wild ones. His book Dancing Naked In The Mind Field (published by Pantheon in August) covers -- among other things -- his passion for hallucinogenic drugs and his belief in flying saucers. He also asserts that HIV is not the cause of AIDS: "There's no good correlation between the HIV cases and the AIDS cases except that most people with AIDS have HIV," he writes, "but most of the people who have AIDS have about anything you could look for, and they have it in abundance. What I'm claiming is that AIDS isn't caused by any one virus."

Yet if HIV doesn't cause AIDS, what does? There are hundreds of answers to that one. Dr. Peter Duesberg is a distinguished California virologist who theorized as early as 1987 that AIDS could be the result of the misuse of both pharmaceutical and non-pharmaceutical drugs. Duesberg, who's been ostracized by mainstream medicine for his stance, claims that the early AIDS patients were gay men who were taking street drugs (speed and cocaine for instance) that wore down their immune system. Duesberg also claims that many gay men in that more promiscuous age were popping antibiotics like candy, to prevent frequent bouts of venereal disease.

Ah yes. Venereal disease. We haven't heard much about that recently, and that's what concerns John Scythes, a tireless Toronto bookstore owner and well published AIDS dissident. Scythes suspects that AIDS results from injury to the immune system caused by untreated syphilis. This idea was briefly popular in the mid-eighties, but Scythes has not given it up. His question: What happened to syphilis? In the 1970s, British scientists warned American doctors that there would be a syphilis epidemic in gay men. Surprisingly, syphilis virtually disappeared from the American scene coincident with the coming of the AIDS crisis.

Scythes claims that the opportunistic diseases associated with AIDS (wasting, tuberculosis, cancers, pneumonia and dementia) are typical of latent syphilis -- a stage that doctors cannot easily diagnose. He's recently returned from Eastern Europe, where he's using his own money to help fund an AIDS study of a group of 80 gay men. And he'ssuggesting to the Russians, who've recently experienced a huge syphilis epidemic, that they examine the effect of a second or third exposure to syphilis in animals -- Scythes speculates that they may in fact develop AIDS.

While AIDS dissidents face conflict not only with established medicine, drug companies and community groups but among their own competing theories, these are dedicated, thoughtful people who hope their quiet persistence someday might somedayrock the medical establishment. In the words of Celia Farber, an American journalist whose consistent coverage of AIDS dissidents in Spin magazine and elsewhere did much to propagate their ideas, "Truth is like an airplane. It has to land somewhere."

HEAL is sponsoring a lecture by Kary Mullis at OISE in Toronto on Oct. 18 at 7 p.m.*