For a decade plus, HEAL (Health Education AIDS Liaison) has defied mainstream science with its persistent, strident claims that HIV is harmless. In a successful strategy to win converts from San Francisco to South Africa, the group spreads its gospel that AIDS is caused by noninfectious, “lifestyle” factors such as recreational drugs and anti-HIV meds and that the research establishment is, at best, foolish and, at worst, murderous for pushing such meds. But recently a handful of ex-members of this “AIDS dissident” movement have been diagnosed with AIDS and say that their embrace of alternative theories put them and their lovers at risk. One even flatly calls HEAL “a cult.”
Until January 1999, Sean Current was an ardent dissident, arranging speaking engagements for movement leader University of California at Berkeley biologist Peter Duesberg as well as giving many talks himself advocating the group’s “Don’t buy the HIV lie.”. Because he had rarely used recreational drugs and took antiretrovirals only for a five-week AZT stint in 1990, Current believed that he was not at risk for AIDS, despite having tested HIV positive. As a result, he and his lover Sebastien, who was HIV negative when they met, did not always practice safer sex.
Two years ago, Current developed his first Kaposi’s sarcoma lesion and certain fungal infections common in PWAs. “I knew what a fucking KS lesion was, but where I was coming from, I couldn’t believe that’s what it was,” he says from his San Diego home. He turned to fellow dissidents, including Duesberg, for advice, and says that he was met with dismissal, scorn, even hostility. Alex Russell, assistant editor of the British dissident journal Continuum, e-mailed Current: “There is no HIV. You are not HIV positive‚ nor is your partner, nor is anyone worldwide. Give up your HIV status-identity and get a life.”
For six months, his health got worse. Finally last October, seriously ill, he started a HAART (highly active antiretroviral therapy) combination. “That was an extremely difficult decision,” he recalls. “But after two weeks of HAART and chemo, my lesions had flattened out and I could breathe again. Now I feel much better.”
Recently, Sebastien not only tested HIV positive but is suffering from some of the same symptoms. His only risk factor for AIDS was unprotected sex with Current—no recreational drugs or the like. “I brought Peter Duesberg into my home, my town, to speak,” Current says with evident pain. “I had just met Sebastien and I introduced him to Peter, and Sebastien became a believer. I have to live with that.”
In Seattle, Current met 28-year-old Egan (who asked that his last name not be used to protect his family’s anonymity). An “ultradissident” convert after testing positive in March 1996, Egan got word of HEAL members dying—one in Seattle, another in Dallas—and others getting sick, and that’s when his doubts began. “I wanted to clarify what our position was,” he recalls. “Was it that HIV definitely wasn’t the cause of AIDS, or that HIV had never been proven to cause AIDS?” This seemingly minor distinction was crucial, he argues, because “to me what separated us from the AIDS orthodoxy was our ability to be open-minded. But what I found was that our leadership was entrenched in a dogma that it would not let go of.” Disillusioned, Egan left HEAL. In 1998, he too began experiencing health problems, including a CD4 counts that plunged below 200. After waiting 18 months, he went on HAART. “Within five weeks, I noticed a dramatic change for the better in my health and energy,” Egan says. He continues to do well, combining HAART with acupuncture and other complementary therapies.
Christine Maggiore, director of Alive and Well, a Los Angeles offshoot of HEAL, says she has spent the past decade HIV positive, drug free and healthy. She vehemently denies that the movement is close-minded. Insisting that her views are “always open to discussion,” she then quotes HEAL chapter and verse: “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.” Her group, Maggiore says, “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.”
Another ex-dissident (who requested anonymity because his San Francisco business clients don’t know he has AIDS) says that he ignored his failing health until Pneumocystis pneumonia nearly killed him, and even then he resisted treatment. He was, he says, “in complete denial, as you are when you’re in a cult,” and likens it to his experience as a Scientologist long ago. His health, too, improved soon after he started on HAART. In a letter, Maggiore blasted him as “a troubled ex-straight guy who sought any scheme or treatment he believed might undo his positive diagnosis, suffered with constant infections brought on by unprotected sex, ignored his health problems.”
Neither Egan nor Current goes as far as this man in their criticism of HEAL dissidents, but both acknowledge that there’s too much rigidity in both camps. “There are days when I don’t know if all that has happened to me is related to HIV and days when it’s the only thing that makes sense. I don’t have a loyalty to either side,” he says, but adds, “What I’m doing with standard treatments seems to be working.”