San Francsico Bay Guardian - February 2, 2000
The "AIDS dissident" movement has been around for well over a decade. For the most part, it has remained on the fringe, wearing the disdain of mainstream scientists and AIDS activists as a badge of pride.
But in the last year, the movement has been challenged from within -- by former believers who, in keeping with dissident orthodoxy, had scorned and avoided recently developed AIDS therapies.
Now some of them have themselves gotten sick with AIDS. They say their belief that HIV couldn't hurt them put their lives and the lives of their lovers at risk. One even goes so far as to compare his former movement to a cult.
Ever since HIV was identified as the cause of AIDS in the mid '80s, some have cast doubt on the connection. Early HIV skeptics included pioneering New York AIDS activist Michael Callen and his doctor, Joseph Sonnabend. In the late 1980s, Prof. Peter Duesberg, a prominent UC Berkeley virologist, began arguing that HIV could not cause AIDS.
Although such theories have been consistently rejected by mainstream science, they have nevertheless spawned an energetic movement that has been highly visible in the Bay Area. Members of ACT UP San Francisco -- a renegade group that long ago split from the rest of the AIDS activist movement, including ACT UP Golden Gate -- plaster the Castro with stickers bearing slogans like "Don't Buy the HIV Lie." And last spring, an L.A.-based group called Alive and Well ran a series of full-page ads in Bay Area papers, including the Bay Guardian. The ads called AIDS "not a sexually transmitted epidemic but a tragic medical mistake" and argued that rather than HIV, "well-known non-contagious factors are what make people sick."
Until last January, Sean Current was an ardent member of the dissident movement. In the early 1990s, as a staffer at a Massachusetts group for HIV-positive people, he brought Duesberg to speak at a meeting. Later he traveled around the country speaking at meetings of Health Education AIDS Liaison (HEAL), a network of HIV skeptics. He introduced himself as "someone who was HIV-positive for a long time and had never been sick" despite shunning anti-HIV drugs -- living proof that HIV was harmless.
"I accepted completely as truth that the dissidents were right and that we had been misled," Current, who now lives in San Diego, recalls. Because he had used recreational drugs only rarely and in the distant past and never took anti-retrovirals except for a five-week stint on AZT in 1990, Current believed he was not at risk for AIDS. And because he believed that HIV was harmless, he was certain that he and his lover Sebastien, who was HIV-negative when they met, did not need to always practice safe sex.
About two years ago, Current developed a Kaposi's sarcoma lesion and began experiencing fungal infections and other problems commonly seen in AIDS patients. His belief in dissident theories kept him from seeing what was happening.
"I knew what a K.S. lesion was," he says, "but where I was coming from I couldn't believe that's what it was."
The turning point came when Current had trouble breathing and was diagnosed as having K.S. in his lungs. He turned to other dissidents for advice and, receiving nothing he considered an adequate answer, sought conventional treatment. In October he began highly active anti-retroviral therapy (HAART) -- taking a combination of drugs to attack his HIV.
"After two weeks of HAART and the chemo, my lesions had all flattened out and I could breathe again," Current says. "I feel much, much better. Within the first month my energy level increased."
Now Sebastien has begun to suffer some of the same symptoms Current experienced. Current says his lover never used drugs and has none of the behavioral risk factors the dissidents claim cause AIDS -- but they did at times have unprotected sex.
"I brought Peter Duesberg into my home, my town, to speak," Current says with obvious pain. "I had just met Sebastien and I introduced him to Peter, and over a few months Sebastien became a believer. I have to live with that."
One of the people Current met while speaking at HEAL meetings was Egan, a Seattle 28-year-old who asked that his last name not be used for family reasons. Egan, who tested positive for HIV in March 1996, says he quickly became an "ultra-dissident" after attending a HEAL meeting that fall.
But the next year, after two HEAL members died, Egan began to have doubts. When Current got sick and yet another HEAL member he knew died, those doubts accelerated.
"This was the third person in a year that had died in a small dissident circle," Egan says. "Being gay, I know a lot of people with HIV and AIDS. I had never personally known anybody outside of the HEAL or dissident groups who had died." He began to suspect that what dissidents scorn as "the orthodoxy" had a better handle on what was happening to his friends than the dissidents did.
In 1998 Egan began experiencing his own health problems, including the same kind of fungal infections Current suffered. His CD4 count -- a measure of the strength of the immune system that orthodox HIV medicine considers crucial -- had plunged below 200, officially qualifying him for an AIDS diagnosis. He, too, went on a three-drug HAART cocktail.
"Within five weeks I noticed a dramatic change for the better in my health and energy, and my blood work reflected this," Egan says. "I bet the dissidents could find some way to explain this -- they always do -- but to me it made perfect sense: the meds were helping me get better, at least for the short term."
Closed minds When they began discussing their experiences with fellow dissidents, Current and Egan say, they were often met with hostility and scorn -- especially when they suggested HIV might be playing some role in their illness. When Current began circulating e-mails asking for ideas, Alex Russell, assistant editor of the British dissident journal Continuum, advised him that "you are not 'HIV positive,' nor is your partner; nor is anyone worldwide. Give up your 'HIV' status-identity and get a life."
After a number of what he considered unproductive exchanges with prominent dissidents, Current penned a furious description of the movement's reaction to the "inconvenience" of people such as himself: "a) Debunk the guy's credibility. b) Find several arbitrary factors that may perhaps be present in his life to attribute this decline in health to. c) Chastise him for not following a more wholesome lifestyle (any dissidents out there want to order a pizza?) d) Harangue him for any medical choices he might make that counter the party line. e) Then claim they don't have all the answers and that the dissidents are not missionaries."
Very few dissidents, Current says, have actually tried to engage him in a meaningful dialogue about his experiences. Similarly, when Egan started raising questions in HEAL Seattle, "it wasn't a hostile environment by any means, but it certainly didn't seem like a lot of the dissident information was up for examination either." Leaders tended to scoff, he recalls, while some rank-and-file members "were more open to differing opinions, which I thought was the whole purpose of the dissident movement."
Christine Maggiore is the director of Alive and Well, the dissident group that placed the San Francisco ads. She vehemently disputes the notion that the dissident movement -- or at least her branch of it -- is dogmatic and closed-minded. "The ads were not a decree, but rather a call for consideration of alternative perspectives on HIV and AIDS," she told us. "The information was presented as a point of departure for examination and dialogue."
Maggiore describes herself as having been HIV-positive and healthy without medication for a decade -- much like Current a few years ago. She says her views are "always open to discussion." But Current's experiences have not altered her rejection of most HIV science, including the standard HIV antibody test. "Sean's experience of illness does not convince me that registering positive on a nonspecific test for proteins that may be associated with past exposure to a retrovirus with no cell-killing mechanisms is the reason he now has Kaposi's sarcoma," she says.
Her group, Maggiore insists, "is about the right to self-determination in health matters. It's not a belief system that a person adopts as a matter of faith when they feel well."
But when another former dissident compared the movement to a cult, Maggiore blasted him with the kind of personal attack Current criticizes.
In an interview with me for a recent article that appeared online, North Bay business owner Bill McCormick (who asked to be given a pseudonym because his straight clients don't know he is HIV-positive) said he ignored his gradually worsening health until he was hospitalized with Pneumocystis carinii pneumonia. Even then, he said, he resisted treatment because of his dissident beliefs.
McCormick said he "was in complete denial, as you are when you're in a cult," and compared the experience to that of being a Scientologist, which he was years before. His health, too, has improved dramatically since he began anti-HIV treatment.
Maggiore responded with a letter blasting McCormick as "an ill and cranky ex-Scientologist, ... a troubled ex-straight guy who thought he found salvation in our literature, who desperately sought any scheme or treatment he believed might undo his positive diagnosis, who suffered with constant infections brought on by unprotected sex, who ignored his mounting health problems."
McCormick, who has had a number of hostile responses from the dissident camp, says simply, "I don't care. I've checked out. Let 'em do what they want to do. I find it amusing." (See below)
Neither Egan nor Current is willing to go quite as far as McCormick. Both now consider themselves on the fence as far as the role of HIV in AIDS, and both say that at times they've seen too much rigidity in both camps. They also worry about the long-term toxicities of the drugs they now take.
"There are days when I feel I don't know if all that has happened to me is related to HIV, and there are days when it's the only thing that makes sense," Current muses. "I don't have a loyalty to either side. What I'm doing with standard treatments seems to be working."
Note: The article, along with Maggiore's response, can be found at http://bayarea.citysearch.com/E/F/SFOCA/0000/13/93.