Jul. 15, 2009 - Issue #717: Edmonton Musicians Directory 2009
Denying Aids
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
Tragedy
By Seth Kalichman
205 pp, Copernicus Books
$33.95
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