HIV Naysayers Find Their Achilles' HEAL
by Bruce Mirken
An "AIDS dissident" movement draws on PWA disgust with medical hype--but sacrifices truth and safety in the process
It's a typical August afternoon in San Francisco, pleasant but not warm, as people file into the Castro district Metropolitan Community Church. Two young men wearing HEAL t-shirts check off the names of those entering the reservation-only event billed in the local gay press as “Breakthrough Discoveries in Scientific HIV/AIDS Research.” But not everyone is so sure about these “discoveries”: Representatives of Project Inform and ACT UP/Golden Gate join AIDS Treatment News (ATN) publisher-editor John James in front of the building, handing out flyers warning the audience not to trust the information.
Once the near-capacity audience of about 180—mostly gay men under 50—is seated, in walks the day’s star, University of California, Berkeley professor of molecular and cell biology Peter Duesberg, PhD, shaking hands like a visiting dignitary. He has an impressive resume: Author of several important papers on virology, member of the National academy of Sciences, recipient of an Outstanding Investigator Grant from the National Institutes of Health (NIH). Duesberg strides to the podium to wild applause. He’s a charming, avuncular speaker with a soft voice and a pronounced German accent, and the crowd is with him, laughing at his jokes and clapping as he tells them that mainstream science’s efforts against AIDS “cannot claim to have saved a single life.”
But the “startling new research” the ads promised never appears; Duesberg’s pitch is largely the same one he has been making for years, somewhat updated: AZT and its cousins are poisons. Condoms and clean needles haven’t protected anyone. The CDC’s AIDS definition is meaningless collection of “30 previously known diseases,” arbitrarily strung together to create the illusion of a new epidemic. Where real illness occurs, Duesberg says, it is caused by recreational and pharmaceutical drugs, not a virus.
If anyone has doubts, they aren’t expressed. The applause and laughter roll along with the professor’s deft patter, and in the question-and-answer period not a single skeptical question gets asked. Several speakers simply give testimonials. One man who identifies himself as a member of the New York City chapter of HEAL (Health Education AIDS Liaison), an international network of self-defined “AIDS dissident” groups, denounces conventional AIDS medicine as “a malignancy in our society,” concluding: “I think it’s appropriate that we’re meeting in a house of God today. We have to bringing the higher power to this serious situation we’re all in, whether it’s Jesus or Buddha or--"
“Duesberg!” a voice shouts, and the room rocks with laughter and applause. Duesberg smiles.
Duesberg has long been known as the nation's leading AIDS dissident. But he is far from alone in this growing movement. HEAL, which began in New York City in 1982 as a forum for information on alternative AIDS treatments, now has 28 chapters worldwide. The Group for the Scientific Repraisal of the HIV/AIDS Hypothesis boasts hundreds of members and publishes a monthly newsletter called Reappraising AIDS, while Continuum, an HIV-is-not-the-cause-of-AIDS British journal, has bult an international readership. Favorable coverage of the dissident position has appeared in a number of mainstream media outlets, most notably Celia Farber's former AIDS column in Spin magazine, the PBS series Tony Brown's Journal and the London Sunday Times.
These HIV nonbelievers aggressively market their message: he San Francisco HEAL chapter regularly plasters the CAstro with brightly colored flyers screaming, "Warning: Consumption of anti-HIV drugs has been shown to be lethal!" HIV positive boxer Tommy Morrison, profiled in POZ last July, takes hi HIV-is-harmless message on the road, to audiences of high school and college students. He claims not only that HIV doesn't cause AIDS but that sexual transmisison of the virus is "scientifically impossible."
AIDS-prevention workers nationwide say they've felt the dissidents' impact. "I've heard numerous men say, 'Well, HIV doesn't really cause AIDS,' and use that as an excuse not to stay safe," comments Dan Wohfeiler, education ndirector of Stop AIDS in San Francisco.
Elyzabeth Wilder, student chair of the AIDS Task Force at the STate University of New York at Pruchase, say her group's efforts at condom distribution and AIDS education were hindered last year by a new HEAL chapter. "HEAL undermind all the work AIDS educators have been doing for the last dozen years," Wilder says.
A letter from a HEAL supporter that appeared in the school's sudent magazine summed up the group's advice, calling condoms "irrelevant" to AIDS prevention and adding that "the key is not to take the 'treatments' your doctor prescribes. They actually cause AIDS and will kill you."
When PWA's start followin such advice, the results can be tragic. Patrick Donnelly, former program director of the Whole Foods Project in New York City, speaks grimly of his friend Seven Simmons. For years, the two men had emphasized alternative/holistic approaches to their HIV infections, but by early 1996 they were both experiencing health problems. Donelly began seeing a conventional doctor and combining starndard anti-HIV treatments with the alternative methods and soon found his health coming back, but his friend took a different path.
Simmons attended the Internatonal AIDS Conference in 1996 on behalf of People for the Ethical Treatment of Animals, campaigning against animal research. There he met members of ACT UP/San Francisco, a renegade chapter that opposed virtually all standard AIDs treatments and has much in common with the Duesberg?HEAL viewpoint.
"He came back with their worldview that all the drugs are evil," Donnelly remembers. "So no only did he not go on any of the cocktails, he also stoped his PCP and MAI prophylaxis. He promptly got PCP for the fourth time, and still didn't change his mind."
The two argued intensely, but Simmons was adamant. "For Steven, it was a black-and-white world of us vs. them," Donnelly recalls, "and the dissident message sort of played into his worldview." Simmons' health deteriorated, and in October 1996 he was diagnosed with lymphoma of the brain. He died three months later.
The AIDS dissident movement hasn't always presented issues in such simplistic terms. Key dissident leaders of the '80s--the late PWA activist Michael Callen, clinician and researcher Josph Sonnabend, MD, and physiologist Robert Root-Bernstein, MD--vociferously challenged the evidence that HIV causes AIDS, and advocated for research on various theories about possible cause and cofactors. Buth they never purported to have "the" answer, much less claimed that whatever caused AIDS was noninfectious. (Indeed, Callen and Sonnabend, along with PWA Richard Berkowitz, invented the concept of safer-sex education.) And while Callen and Sonnaben railed agaginst AZT monotherapy--now widely viewed as having hurt more PWAs than it helped--they also fought hard to add PCP prophylaxis to the standard of care.
But many observers argue that a dissident movement once focused on asking hard questions and spurring innovative research has largely ossified into a stern purveyor of rigid and possibly dangerous, doctrine. Duesberg went from challenging the level of proof that HIV causes AIDS to insisting he knew the "real" causes--recreational and pharmaceutical drugs. And HEAL "was much more positive in the old days," says Donnelly. "It was about everything we weren't looking at--nutrition, Chinese herbs--and not so much who was evil in the AIDS world."
It may, at first glance, seem puzzling that this movement is making headway now, in the proteease era, when PWA death rates have been cut by half and an ever-growing mountain of data correlates an undetectable viral load wih health. For most scientists, doctors and AIDS activists, recent developments have pu to rest any doubts that HIV is the primary cause of AIDS.
So what's going on here?
"There's an old sayng that a half-truth is like half a brick: You can throw it further," ATN's John James says. "No one would give these people the time of day if there wasn't some truth in what they say." James emphatically rejects the notion that HIV is harmless, but is equally convinced that certain converns the dissidents raise--like excessive drug company influence over research agendas and the obstacles to mounting studies of unpatentable alternative treatments--are real.
And many observers say that drug company hype and a rush to judgment on early interventio nwith protease cocktail have heightened pressure on PWAs to "get with the program." Indeed, some AIDS docs--not just outspoken dissidents--believe too many people are starting therapy too soon, before the evidence is in. According to Northern California alternative-treatmen activist Michael Onstott, the "hit early, hit hard" campaign intersects with doctors' arrogance to create a powerful resonance for the HEAL/Duesberg message among some PWAs. "There's a lot of distrust for the medical establishment," observes Onstott, who has used nutritional and alternative treatments for years but also takes a protease-based cocktail. "They may have had bad experiences with doctors who have big egos, closed minds and a cookbook approach."
What most frustrates Onstott is that the dissidents take a fragment of truth and make unfounded leaps in logic. "They're still insisting the drugs aren't going to work when they already have," he says. "It's clear that the medications have saved lives," though he acknowledges that they have failed some PWAs and produced nasty side effects in others.
And critics argue that dissidenst often mix facts and fantasy into a misleading package that appeals to PWAs justifiably skeptical of drug company hype. Indeed, much of Duesberg's San Francisco talk was dubious at best. At one point, he asserted that antiretroviral drugs "are given to 200,000 people annually without ever having been tested, at least in the published literature, in rats, mice, birds, or anything," turning HIV positive people, he claimed, into human guinea pigs. The truth is that the National Library of Medicine's AIDSLINE database lists thousands of animal studies of these drugs. He showed a slide with data purpoting to demonstrate that PWAs are heavy users of recreational drugs (to support his drugs-cause-AIDS-theory), but failed to included figures for drug users who didn't develop AIDS.
At another point, he presented a graph with two lines: One curiving sharply upward, indicating U.S. AIDS cases, and another absolutely flat, showing the number of HIV positive Americans stuck at one million. If one causes the other, he asked, how can the lines be so different? But Duesberg was comparing apples and oranges: The actual count of reported AIDS cases, updated monthly, vs. mere estimates of infections, recalculated only once in the past decade (another Duesberg error: The official guess for several years has been 650,000-900,00, not a million, people living with HIV).
Asked about these contradictions, he goes on the counterattack: "This country spends roughly a billion dollars on HIV testing each year in order to get a picture of how many people are infected, what to do about it and how to control it." This should produce reliable numbers, he argues.
Nonsense, replies CDC statistician John Karon. "It's not the number of HIV tests that matters, it's whether theyr'e done in a representative sample." Since most tests are done for people who feel at risk, the results don't consitute such a sample and are thus irrelevant to the estimates.
But often there is a kernel of truth in dissident arguments, even if the conclusions are bogus. One recurrent theme, for example, is the pharmaceutical industry's influence over the research agenda. AFter the first burst of optimistic protease studies in early 1996, Reappraising AIDS published a lengthy critique of these "corporate-sponsored" trials and declared, "One of the continuing scandals of AIDS research is the general lack of thorough drug testing."
AIDS activists who accept HIV as the cause have long voiced similar concerns. John James writes regularly about how research tends to chase ideas with commercial potential, leaving worthwhile but unprofitable approaches unstudied. ACT UP?New York member George Carter cites nutitional supplementation as an area that has been neglected by mainstream research, saying bluntly, "Lack of patentability, and arrogance at NIH, are part of the reason [supplements] are not comprehensively studied." Many argue that research on potential cofactors ranging from HHV-6A to nutritional deficiencies has lagged unconscionably.
Activists also regularly criticize drug trials. ACT UP/Golden Gate, for example, has slammed Bristol-Myers Squibb for allegedly downplaying side effects of d4T, and Carter observes: "In AIDS, examples abound of underplaying toxicities. But this doen't negate the benefits the drugs have given to people with AIDS. Drug companies do important research."
The difference is that the dissidents portray a black-and-white world in which, for instance, because of the pharmaceutical industry's profit-hungry nature, every product it promotes is evil. But people like CArter, James, and Onsott see a world with many shades of gray in which no one--scientists, government officials, drug companies or even activists--is either 100 percent good or 100 percent evil. It's no surprise that a profit-driven company will put the most optimistic spin on its studies, they say, but that doesn't necessarily mean its drug is not effective.
A prime example of this good-versus-evil worldview is PCP prophylaxis. Once energetically advocated by such dissidents as Michael Callen, it is now denounced by the movement he once helped lead. "Using powerful antibiotics such as Bactrim every day for months to years is a new and potentially deadly practice," writes HEAL/Los Angeles founder Christine Maggiore in her widely distributed booklet, What If Everything You Knew About AIDS Was Wrong? In a letter to Contiuum, HEAL/New York president Michael Ellner called PCP prophylaxis prolongs lives, but again they may be heaving at least part of a brick, Onstott says. "What they're right about is that there's overkill with a lot of immunosuppressive drugs. There are people taking 35 different drugs on regimens no one should be subjected to." He acknowledges that use of antibiotics for years may weaken resistance to some infections, but says this problem can often be alleviated with nutritional supplements, and adds: "What they're wrong about is judicious intervention with some of these drugs. HEAL absolutely denies that PCP prophylaxis is beneficial. BUt it's been absolutely shown that PCP prophylaxis saves lives." Indeed, Gene Fedorko, a nine-year veteran and former president of HEAL/New York told POZ in 1995 that he knew of many PWAs who had to be rushed to emergency rooms with "raging cases of PCP" following HEAL's advice.
Some longtime dissidents have managed to maintain clear distinctions between medical-establishment hype and clinical truths. Sonnabend, for example, blasts the recent rush toward "hit early, hit hard" with antiretroviral therapy as a "crystal ball machine," while recognizing the mounting data that HIV plays some role in the disease and seeing firsthand in his own practice that protease cocktails help people with advanced disease.
But most dissident propaganda leaves scant room for such pragmatic distinctions, and with this all-or-nothing attitude comes a conspiratorial worldview. After all, if the truth is so obvious, then somebody must be suppressing it. "The AIDS Crisis: An Epidemic of Lies," screamed a 1995 HEAL/Los Angeles leaflet, while a recent HEAL/San Francisco flyer declared, "AIDS... Where the doctor takes your money... the government takes your rights... the medicine takes your life... a virus takes the blame... and science takes the credit."
To some critics, the paranoia in these slogans borders on cultlike. But the genius of the dissident movement is, above all, that its message is supremely comforting to people in trouble--such as Frank Green. Founder of the small HEAL chapter in Cleveland, Green gained reassurance when he discovered the dissident movement. Living in New York City in the '80s, Green was a drug user, "strung-out and living in an abandoned building." After testing positive in 1988, "I felt powerless," he says. "I felt I could do nothing but wait for death or put myself in the hands of doctors. I felt like I was setting myself up for a lifetime of taking pills and dependency."
The dissident movement was a revelation. "I decided, based on what I'd read, that it was at least a possibility that AIDS was not caused by HIV and that I, Frank Green, might not die from AIDS," he remembers. "When I realized that, I stopped using drugs and my health improved... I had hope again. I felt freed."
Even if he turns out to be wrong about HIV, Green is satisfied with the choice he's made. People on three-or-four-drug- anti-HIV cocktails "are completely trapped in this lifestyle," Green says. "Their lives are built around these drugs. I wouldn't want a life like that... I'm not afraid of death. I'm afraid of medical dependency."
For those PWAs who buy the dissident line, no faceless, invisible virus threatens their lives. There is no need for the conventional treadmill of drug combos, lab tests, doctor visits. Just live a healthy lifestyle and all will be fine. "I think that's what a lot of people would like to believe," Onstott says. "It's appealing to say, 'If I just clean up my life and avoid these drugs, I'll be OK."
Indeed, Patrick Donnelly says, his friend Steven Simmons drew comfort from sticking to what he thought was the true and moral path--but he died nonetheless. As for Donnelly, "I've made the choice to take ideas form whatever toolbox I can find that works."
The (Radical) Right Stuff
Some dissidents’ not-so hidden agendas
One reason many are wary of the “AIDS dissident” movement is that its leadership is peppered with right-wingers, many of them overtly anti-gay.
The editorial board of Reappraising AIDS includes at least three ultraconservatives who reject much of modern science, not just HIV medicine: Tom Bethell and Phillip E. Johnson are outspoken creationists who discount science’s understanding of evolution, and Charles Thomas once gave a lecture called “Scary Science,” denouncing virtually the entire U.S. environmental movement as a conspiracy to hand control of our lives over to the government.
For many years Peter Duesberg collaborated with graduate student Bryan Ellison, who railed against the “abominable sin of homosexuality” in a 1995 fundraising letter. The two collaborated on an early version of Duesberg’s book, Inventing the AID Virus, as well as a 1990 article for Policy Review, the journal of the conservative and antigay Heritage Foundation. But Duesberg says that he never noticed homophobia in Ellison. Offering no substantiations, he adds, “People say he may be gay himself.”
Duesberg has appeared at least twice on Radio Free America, a talk show produced by the antisemitic, racist and antigay Liberty Lobby. According to the Anti-Defamation League, Liberty Lobby “has been associated with almost every far-right movement in the United States” for decades, including efforts to deny that the Holocaust ever occurred.
After he and Ellison split, Duesberg got his book published by Regnery Publishing, a specialist in right-wing books whose authors include Pat Buchanan and Mark Fuhrman, the notorious LA cop from the O.J. Simpson case. The publisher is not known for AIDS books, but has published homophobes.
Asked about this, Duesberg avoids discussing his own politics but rails against scientific censorship. “I do not have the choice of Anthony Fauci or Martin Delaney, who have five publishers,” he declares. “I though America is a democracy. It’s now bad if you are on the right or on the left?” Contracted for comment, HEAL/San Francisco cofounder Dennis McKown at first blasted “all these rumors about Peter Duesberg seeking Pat Buchanan’s publisher” as “sheer hogwash.” When confronted with the details, he retorted, “I don’t see what this has to do with the facts here.”
It may have a lot to do with them. Dismissing HIV plays into aspects of a far-right agenda embraced by several leading “dissidents.” In his latest book, Defeating Darwinism, Johnson of Reappraising AIDS bemoans how America no longer accepts God as “a fact.” This, he argues “seemed to make chastity obsolete” and allowed “homosexual activists” to claim “victim status.” Bethell took a similar tack in a 1991 Los Angeles Times column, complaining that gays used AIDS as a pretext to “proselytize in public about their private acts.”
Ellison made the connection more bluntly in his 1995 letter. “Militant ‘gay rights’ organizations… now use your tax dollars to defile your tender school-age children or grandchildren with their perverted ‘AIDS education,’” he wrote. “For the first time in history little children are being taught in their classrooms about anal and oral sex!... God must be weeping.
If AIDS education is a pretext to “defile” children, what better way to stop the defilement than to sow doubt that a sexually transmitted virus causes AIDS? Which leads many PWAs to ask: Can these “dissidents” ever be considered our allies?
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