Jul. 15, 2009 - Issue #717: Edmonton Musicians Directory 2009
State of denial: New book challenges the claims and influence of AIDS denialists
As the first global pandemic in the age of modern media, HIV and AIDS have
long been the subjects of wild rumours and misinformation. First recognized
in the two socially marginalized groups of intravenous drug users and
homosexual men, HIV and AIDS became lightning rods for vicious stigmatization
and various untruths about how the disease could be spread. Public relations
campaigns featuring celebrities and scientists fought against the
misinformation which erupted in the media in the late '80s and early '90s,
and were effective at ridding the general consciousness of false notions such
as that AIDS could be transmitted through mosquitoes or by coming into casual
contact with an infected individual.
In more recent years, however, the Internet has given rise to a new wave of rumours—AIDS denialism. Stimulated by the wider audience and the ability to say anything on the Internet, a small group of people who don't believe that HIV causes AIDS or who believe that the antiretroviral therapies used to combat HIV and AIDS are toxic poisons, have begun to communicate with each other, create outreach materials and try to influence others.
In some cases, this influence has been vast, and deadly. Influenced by information from the Internet as well as direct contact with a number of prominent AIDS denialists, former South African president Thabo Mbeki refused to implement a significant antiretroviral therapy program in that country, while at the same time denying that HIV caused AIDS. These actions, coupled with his government's promotion of vitamins and natural "cures" as better alternatives than antiretroviral therapies led to an estimated 330 000 deaths between 2000 and 2005, according to a 2008 Harvard study.
It was this power and influence over life-and-death policy decisions that attracted Seth Kalichman to the topic of AIDS denialism. A professor of psychology at the University of Connecticut and a National Institutes of Health (NIH)-funded AIDS researcher into the behavioural factors of AIDS, Kalichman has recently written a book about the denialist movement, entitled Denying AIDS: Conspiracy Theories, Pseudoscience, and Human Tragedy, which outlines the history of denialism as well as its consequences. Chief among these consequences is the scores of deaths in South Africa, he says, but the effect of misinformation available to anyone with an Internet connection can be felt much closer to home.
"Once you start looking at what was happening in South Africa you see then also what's been happening in Canada, in Australia, in the UK, in the US, in Mexico, really on every continent," he says. "It's the promotion of false information that is confusing people that there is actually a debate about AIDS, that is telling people that they don't have to worry about their HIV test results because just as many scientists say HIV doesn't exist. It's that promotion of false information that's the problem."
Making a clear distinction between denial and denialism, Kalichman explains that it is natural for anyone facing the spectre of a life threatening disease to experience denial, to say, "This can't be happening to me." The problem is that when vulnerable individuals facing such a diagnosis go looking for information, they're faced with well-organized and slickly packaged websites purporting to offer medical information, but which ultimately deny that AIDS exists or that HIV causes AIDS.
"Those are really the victims of AIDS denialism, people who are seeking information and can't tell the difference between quality medicine and science and quackery and pseudoscience," Kalichman says, explaining that researchers may never know how many people have been convinced to forego legitimate therapies based on the conspiracy theories of AIDS denialists. "It's normal and natural for anyone who's diagnosed with a life-threatening disease to experience denial. What AIDS denialists are then saying is, 'You're right. It's not happening to you—there is no such thing as HIV causing AIDS. You really need to look at this information—it may not even be something you need to worry about.' These are the claims that have taken on a life of their own."
As a psychologist, however, Kalichman's interest in studying AIDS
denialists wasn't solely about reducing the harm being caused by the myths
these groups propagate; he was also interested in the type of mindset that
could incubate the vast conspiracy theories needed to explain why scientists
and governments would work so hard to promote "false" information.
"People who buy into AIDS denialism and people who are propagating AIDS denialism are psychologically interesting—they represent some interesting traits and vulnerabilities and I don't think anyone's been trying to understand the AIDS denialists," he says, explaining that while they don't share one characteristic, most denialists believe there is a conspiracy between pharmaceutical companies, academics and governments to promote the idea that HIV causes AIDS in order to make money off the disease.
"Everyone who promotes AIDS denialist ideas have a real suspicion against the government, against the pharmaceutical companies, academics and science and so there's a complete and total rejection of, for example, the enterprise of peer review, that it's set up to sustain the status quo."
In order to get closer to the people he was studying, Kalichman went undercover, posing as "Joe," a student of public health interested in alternative theories of AIDS—a claim not necessarily untrue. By doing so, Kalichman got an insider's perspective on the movement and its leaders.
"I thought the best way to understand what's going on with this is to get an inside view," he says. "These guys would never talk to me, they'll never trust me—Seth Kalichman is an NIH-funded researcher, there isn't anywhere in the world that I'm going to get an accurate representation of what they're about."
His approach has garnered a fair amount of criticism from denialist camps, which at the same time asserted that no one told him anything they wouldn't have told anyone else. Nonetheless, his book has been decried by many as unethical from a research standpoint, a claim Kalichman refutes.
"There's no question that I wasn't doing research—this was not a part of my research, this was on my own time and it was to write this book. It's not like my NIH-funded research—I don't have a grant to study the AIDS denialists and I went through some unethical procedure," he says. "It was more, and I say this in Denying AIDS, like the work that a journalist would do than what an AIDS researcher would do."
Kalichman has also been criticized for comparing AIDS denialists with Holocaust denialists, but Kalichman asserts that it's a fair comparison—no matter what kind of denialism is being talked about, whether it's AIDS, the Holocaust, climate change, the anti-vaccine movement or the 9/11 truth movement, the tactics, rhetoric and mindset is always the same.
"The principles that they're all built on is a mistrust of the historical record. In the case of Holocaust denial there's a promotion of the idea that there is a debate between historians, and the same could be said between scientists on the AIDS side. Holocaust deniers will cherry-pick historical facts and pull them out of context, AIDS denialists do the same thing, they cherry-pick the science. When you present a Holocaust denier with evidence that the Holocaust did exist to refute what they said, they change what they said, they do what is called 'moving the goal posts' and AIDS denialists do the same thing," he says. "So I don't think it's unfair, I think it is what it is."
Delving so deeply into AIDS denialism gave Kalichman an understanding of
the structure that underlies the entire movement. On the one hand, he says,
there are what he calls the academics, individuals who present themselves as
scientists or as authorities on the subject. On the other are the activists,
mainly HIV-positive people such as Karri Stokely or the recently-deceased
Christine Maggiore (who died from AIDS).
The activists are in denial about their status, and want desperately to believe that there is no such thing as HIV or AIDS. These two groups rely on each other—the academics need the attention and the activists need the assurance—and the proselytizing by both groups brings new converts.
"The academics are coming at this from a completely narcissistic, self indulging, on-the-world-stage-opportunity place. They're just asking to be treated like legitimate scientists on equal par with everybody else—that's what they want, and they see this as a way to get it," he says. "People like Karri Stokely are clearly in malignant denial—it's so unacceptable to believe you have a life-threatening disease when you have two little kids—it's perfectly clear why that would be so hard. People who buy into AIDS denialism are motivated by that same place. She, like Christine Maggiore, has taken it to a different level—where the bubble is so fragile around her that she has to maintain this reality and convince everyone else that HIV is a fraud."
Ultimately, Kalichman hopes that his book will help people diagnosed with HIV or AIDS. Not only are all of the royalties from sales of the book being donated towards purchasing antiretrovirals in Africa, he's hoping that the book will help sort out the misinformation that exists on the topic of HIV and AIDS and can cause such harm to newly diagnosed people just looking for legitimate information.
"I'm part of that group that believes we really can't ignore these guys—we have to be out front calling them on what they're saying and pointing out who they are. They are not legitimate scientists, not one of them, and I think people need to have that kind of information so they can sort it out." V
Denying AIDS: Conspiracy Theories, Pseudoscience, and Human
By Seth Kalichman
205 pp, Copernicus Books
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