Friday, July 30, 2010
Published at the Body.com Spring 2010
More is known about HIV than about any other virus. Less than three decades ago, doctors were perplexed by the appearance of Kaposi's sarcoma and Pneumocystis pneumonia (PCP) in young gay men. Since then, scientists and doctors, spurred by the activism of people with AIDS, discovered the virus now called HIV and proved that it causes AIDS by crippling the immune system until the body can no longer resist life-threatening infections.
Scientists around the world have isolated HIV, photographed it with electron microscopes, and sequenced the genomes of its different subtypes. There are now highly accurate tests for HIV antibodies and the virus itself, and increasingly effective and tolerable antiretroviral drugs (ARVs) for its treatment. Science is a gradual process, and there is still much that is not fully understood about HIV, but the evidence that HIV exists, is transmissible by blood, semen, and vaginal fluids -- and that it causes AIDS -- is vast and thorough.
And yet there are thousands of people who persistently reject these facts. They believe that HIV is harmless or doesn't exist. Some argue that AIDS has other underlying causes, such as drugs, depression, "dirty" sex, stress, malnutrition, or conventional medicine. Others say that AIDS is just an artificial clustering of familiar diseases. Those who reject HIV/AIDS science call themselves "AIDS dissidents," but others usually refer them to as "HIV denialists" because they elevate personal denial into an ideology.
Most people are astonished by the existence of HIV denialism. "I had no idea there were 'AIDS deniers,' and I still don't understand why someone would believe such a thing," a blogger wrote upon reading of the deaths of denialist Christine Maggiore and her young daughter, both from AIDS. What is most baffling is the persistence of irrational beliefs, held firmly despite the evidence, despite the terrible deaths, and despite the absence of a coherent alternative theory. How can people ignore both scientific evidence and their own failing health? How could Maggiore do nothing to prevent HIV transmission to her children? How could she allow her child and herself to die needlessly? And how could her admirers, initially frightened, go on to rebuild the wall of denial?
The persistence of the HIV denialism can be understood if we view the movement as a kind of cult. Denialists refer to HIV medicine and science as "the orthodoxy," giving the field a religious framework, and imagine themselves in an oppositional, visionary role. Many of the features that social scientists find typical of cults characterize the denialists. Most fundamentally, they maintain an intense "us-versus-them" worldview. Those inside belong to an exalted and secretive group -- they feel superior but persecuted for knowing a hidden truth. They believe that the pharmaceutical industry, governments, researchers, clinicians, the United Nations, AIDS activists, foundations, and HIV organizations are united in an elaborate global plot, which ex-traffic cop Clark Baker calls "the most significant criminal conspiracy I have ever imagined" to kill healthy people with toxic drugs for profit.
Many HIV denialists adopt alternative health and spiritual beliefs, including consciousness-altering practices that are typical of cults. The use of hypnosis by HEAL-New York stands out. Members believe that simply being told that they are HIV-positive makes people sicken and die. HEAL's leader, Michael Ellner, uses hypnosis to extract people from the deadly mental "AIDS Zone" and to make them feel "at peace with testing positive."
Ellner is not alone in thinking that words kill but viruses don't. Cult scholars call this "mystical manipulation." Denialist Matt Irwin developed the theory in AIDS and the Voodoo Hex: "The severe, acute psychological stress of being diagnosed 'HIV Positive' is quickly transformed into a severe, chronic psychological stress of living with a prediction of a horrifying decline that could start at any time. This causes a suppression of the immune system, with selective depletion of CD4 T-cells. ... These factors have been studied in healthy people where they create the very same immunosuppression and immune dysregulation that may later be called 'AIDS.'"
Denialist Michael Geiger is another proponent of "dangerous" thoughts, and even accused another dissident of helping to kill Christine Maggiore by worrying about her. "Have we as yet learned nothing ... of how easy it is to plant projections of sickness and death onto our own selves, as well as our friends, acquaintances or even onto our children and thereby help to create those fears into our realities?" Ironically, Celia Farber regularly "projects" in just this way: "I feared for [Maggiore's] life, always. I feared the battle would kill her, as I have felt it could kill me, if I couldn't find enough beauty to offset the malevolence. This is a deeply occult battle, and Christine got caught in its darkest shadows." Farber also blames the "AIDS orthodoxy" for long-distance mental homicide: "This is voodoo, what they are doing to [South Africa's denialist Health Minister] Manto. It is heartbreaking. I sometimes think they killed [Maggiore's daughter] EJ with their voodoo, too. What did EJ die of? Can anybody explain it and does it look like anything anybody has ever seen?" (EJ died of PCP.)
Cults often manipulate feelings of shame and guilt to control their members. Because both AIDS and the activities associated with HIV transmission are stigmatized, the HIV-negative denialist leadership often degrades those who have HIV, even if they are dissidents themselves. Peter Duesberg has always blamed AIDS in gay men on poppers and promiscuity; he dismisses those who say they didn't engage in either behavior as liars. Clark Baker says that AIDS was invented because "a small group of promiscuous, addicted, nitrite-huffing, gonorrheal and syphilitic bath house veterans began to get sick" and "refused to accept blame for their self-destructive behavior." A poster on a denialist forum attributes AIDS to "premature aging" from "snorting poppers, doing meth, drinking heavily, smoking heavily, eating poorly, not sleeping, having unprotected sex and taking the various pathogens of hundreds of sexual partners into your body."
HIV-positive denialists who get sick are blamed for lacking commitment: "Given a choice between the opposing ideas of dying from the deadly HIV product or living a long healthy life based on the dissident belief that the HIV product is nothing more than a baseless commodity being sold by junk merchants, chosing [sic] the dissident dream is the far better choice. A pseudo dissident ... will use the dissident view as a survival coping device ... When ordinary illness strikes and they run to RX drugs and suffer the very types of health decline that the dissident model predicts, they attack the dissident message."
Denialists who die from AIDS are often posthumously smeared as liars and secret addicts.
When Raphael Lombardo died, Peter Duesberg wrote, "In hindsight, I think his letter was almost too good to be true. I am afraid now, he described the man he wanted to be and his Italian family expected him to be, but not the one he really was." (Duesberg meant that Lombardo lied about drug use.) Liam Scheff rolled the reputation of Mark Griffiths down a slippery slope of innuendo into the gutter: "I knew Mark; he was cogent when I worked with him -- never anything but. Almost. Sometimes he was -- once or twice he'd been -- a bit groggy. But he told me that it was alcohol. In fact he told me that he did consume alcohol -- perhaps more than he should." Scheff said drinking, not AIDS, killed Griffiths.
Like those leaving a cult, former denialists are treated with extraordinary hostility. Dr. Joseph Sonnabend was one of the first physicians to treat people with AIDS. He insisted on a very high threshold of evidence that HIV causes AIDS, was cautious in prescribing unproven treatments, and recognized that co-factors, such as drug use and frequent STDs, influence an individual's risk of infection upon exposure and how fast HIV disease progresses. Denialists have often claimed Sonnabend as one of their own. When clips of him were used in the denialist film "House of Numbers" to support the denialist perspective, Sonnabend responded with a scathing blog at Poz.com, repudiating the film's message and affirming that HIV causes AIDS and that ARVs save lives. He wrote: "It is hard to adequately convey the feelings of a physician who was able to finally help his patients in the mid-1990s, having lost hundreds to this disease before that time. By the time these drugs became available about 400 of my patients had succumbed to AIDS, a dreadful rate of mortality. The effect of these drugs was life saving to those with advanced disease whose survival had been limited before. The portrayal of these drugs as in effect only toxic is so unfair."
Sonnabend was immediately savaged by denialists for betraying the cult. In one forum, "Ellis" wrote: "[Y]ou're a disgusting fraud, in my opinion, having once bravely stood apart from the racket, now pointing fingers and calling names of those who still have the decency to not be bought and sold for dollars and popularity contests. Who cares if HIV causes AIDS, or ten thousand things cause AIDS? ... Are you attempting to denigrate the film because of your own outlandish, humiliating lack of composure on camera? Because you sound like the old boozy floozy you really might be, not so deep down? Because you sold out to corporate pseudo-science a long time ago, do you now pour hatred onto those who still aren't satisfied with the one-size-fits-none industrial diagnosis? Shame on you, deep, deep, deep shame. You absurd old sell-out."
Celia Farber similarly attacked Sonnabend on the Spectator's website, accusing him of personal and medical treachery: "I have countless hours of tapes from the ever shifting but consistently indignant Joe Sonnabend dating as far back at 1988 ... through 2001, if not longer. After that, he became impossibly sycophantic to the orthodoxy. ... As for me, like everybody else under Joe's Bus, I forgave him because he seemed so abashed. I even invited him to my wedding. But he is a weak, dishonest man without any integrity, who loves the sensation of throwing everybody under the bus." Sonnabend's sin was to continue to evaluate the evidence, until the proof that HIV causes AIDS and that HAART is an effective treatment was conclusive.
Within cults, the milieu is controlled and members are isolated. For denialists, who have no ashram, this happens online and in small groups. People worried about HIV are urged not to take the antibody test, to avoid mainstream information about AIDS, and to "stay as far away from allopathic doctors as possible."
Robert Lifton, a scholar of cults, identified the "principle of doctrine over person" as a characteristic feature. This doctrine "is invoked when cult members sense a conflict between what they are experiencing and what dogma says they should experience. The internalized message ... is that one must negate that personal experience on behalf of the truth of the dogma. Contradictions become associated with guilt: doubt indicates one's own deficiency or evil." Many HIV-positive denialists struggle with the reality of failing immune systems, which undermines their belief that HIV is irrelevant. The long list of denialists who have died from AIDS (posted on AIDStruth.org) contrasts with the fact that not one of the HIV-negative denialist leaders has died young, let alone with multiple strange infections that happen to be AIDS-defining illnesses.
Some HIV-positive denialists defy the prohibition on HIV treatment when they develop AIDS; they start ARVs and experience a rapid return to health. But instead of abandoning denial, many struggle to frame an alternative explanation for the success of the meds. Noreen Martin insists that her AIDS is not viral: "My own experience with AIDS was due to a lifetime of negative health issues. When extremely sick, I took the medicines, ate healthy, took over 50 supplements a day, and had a good attitude. So, within a few months I was as good as new." She stopped ARVs for three years. "During this time," she wrote, "my fatigue slowly came back, my CD4s dipped and my viral load increased to over 3 million. Nevertheless, I never placed much stock in either of these numbers because after extensive research, I realized that neither were [sic] related to health. It was other conditions that caused the problems and the ARVs were powerful enough to keep them at bay. ... Last fall, I became extremely tired again after being anemic for almost a year and fighting lymphedema for months, I took the ARVs, as I could barely get off the couch and could not function in life." Her health again improved.
Another denialist said, "I have seen many friends get better on ARVs, but my understanding has always been that these drugs are broad spectrum in their efficacy -- that they serve to kill virtually all pathogens, but also all the 'good stuff' in our bodies." Another, a thoughtful woman struggling to reconcile her recurrent illness with dogma, wrote: "All I can say is that I'm doing what seems to be working at the time. If it stops working, I'll make a new plan. And just because they call them antiretrovirals doesn't mean that's what they are." The only way they can remain alive and in the dissident camp is to pretend that ARVs, so precisely designed to target the ways that HIV infects T-cells, are a supercharged all-purpose germicide.
Some denialists with HIV are unable to ignore their own experience, and are pushing back against the cult rhetoric. One weary man, positive since 1996, wrote, "Frankly, I'm sick of the questions at this point. Some of us here are experiencing strangely similar symptoms. Some well known people have died just like the orthodoxy said they would. At what point are dissidents going to start asking the important questions, rather than repeat the words 'AIDS ZONE' over and over? I'm not in any AIDS zone, but something is happening beyond my control. I have never been closer to taking Atripla than I am today. I hate to type that ... but it's true."
The denialist movement is also deeply split by conflicting theories of AIDS causality, different schools of quackery, and the basic question of whether the virus exists or not. Their unity is only maintained by their ritual invocation of long-disproved claims and their refusal to engage with scientific evidence. The most successful denialist propaganda avoids making direct claims and persuades only by innuendo and inference, because clear and specific statements generate hostility within the movement and can be easily disproven by evidence.
Still, it is very difficult for believers to break free of HIV denialism. Dissidents build their worldviews, their sense of themselves as heroic and embattled, their careers in journalism and alternative medicine, and their webs of social relationships around their rejection of HIV science and medicine. They have a lot to lose if they acknowledge that they are simply wrong. But as HIV treatments get better and better, and people with HIV live long and healthy lives using them, the psychological impulse to refuse to accept what was once a terrible diagnosis is diminished. Perhaps soon the only AIDS denialists will be HIV-negative people far removed from the communities most affected by the epidemic, and their cult won't matter at all.
Jeanne Bergman is a veteran AIDS and human rights activist in New York City.
Posted by Seth Kalichman at 11:47 PM