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Reprinted from Gadfly Magazine June 11, 2001, http://www.gadfly.org
AIDS Science Questioned
By Kathleen F. Phalen
“Christine Maggiore is a woman who questions AIDS
science, who finds more doubt than answers in existing research
and is still looking for sound evidence that drugs like AZT really
equal life. I was struck by the intensity of her beliefs, her healthy
distrust of conflicting evidence, hidden information and purveyors
of establishment jargon…”
===
“The important thing is to never stop questioning” Albert
Einstein
I remember Alexander Tedaosh Zielinski. The way life hadn’t
turned him bitter. The way he fingered his café mochachino
and told me his story. The way his brother was killed by the KGB
and he was sent to a Russian prison when he was eight. To those
who sent him there, it wasn’t prison; it was a children’s
school for enemies of the people. A school they let him leave when
he was 16 for life in a concentration camp in Siberia. His crime?
Questions. Questions about those in power. Questions about the suffering
he witnessed, even as a child. In his world, discourse, alternative
thought, was criminal.
Alexander dreamed of America.
A few years later, I met Lidia Bogush. Gentle, like Alexander. She
gave me sugar cookies and black tea. She, too, dreamed of freedom.
She longed for a better life. She longed for her husband, Sylvestru.
The touch of his hand. But Romanian guards, or as she called them,
Ceausescu’s men, kept Lidia and her nine children under constant
surveillance and Sylvestru in prison. Their crime? Questions. Questions
about communism, about the regime that silenced ideas. Still guns,
middle-of-the-night raids and barbed-wire fencing couldn’t
quell the fire in her belly. Lidia knew there was a world where
her children could say what they believed. A world where anyone
was free to question those in power, free to disagree.
Lidia dreamed of America.
Last summer I read of Christine Maggiore, the woman who questions
AIDS science. The woman who finds more doubt than answers in existing
research and is still looking for sound evidence that drugs like
AZT really equal life. The woman who is HIV-positive. I was struck
by the intensity of her beliefs, her healthy distrust of conflicting
evidence, hidden information and purveyors of establishment jargon.
I couldn’t help but think of Alexander and Lidia. There is
the same gentle passion, the desire for answers. But like Alexander
and Lidia, Christine’s ideas are far from mainstream, far
from those in power. So she’s getting lots of attention. Some
good. Some not so good. There are those who want to shut her out,
take her down, stop the discourse.
Only thing is, Christine lives in America.
So I’m wondering why they’re calling her ideas dangerous,
irresponsible—why some call her a heretic. And that makes
me wonder: Who founded the Church of Established HIV Theory? Who
created this dogma that is immune to question? I’m trying
to figure out why scientific discourse is irresponsible. Isn’t
that what science is all about? Why do some say Christine's actions
are criminal? Why has the media misquoted her, poisoned her work
and her words? After months of talking with Christine, I’m
still asking why. And I’m thinking it must be because she’s
asking questions. Asking for the evidence, the clinical trials,
the science behind the raging mantra that "HIV causes AIDS."
So far, no one has answered her questions.
Throughout history, those in power have ostracized new, alternative
thought. Ideas first conceived as lunacy are often later viewed
as genius. Consider Joseph Lister, Albert Einstein, Galileo. Still,
alternative ideas have consequences when put into mainstream thought.
What are the consequences of Christine’s ideas? What would
those in power have to lose? This year’s federal AIDS budget
is nearly $11.6 billion. So is it research dollars? Grant funding?
Drug company support? Personal reputations? Or just a fear that
what they believe, what they’ve based everything on, is wrong?
She gets the call in 1992. "My reaction was one of shock, shame
and profound despair," says Christine about the day she was
no longer what society calls normal, the day she was found to be
HIV-positive. "I was scared out of my mind…. I asked
the doctor, ‘What should I do?’ and she says, ‘I
don’t know’ and lets me use her phone."
It’s a fluke that she even went to that doctor. Her friend
Judy told her there’s this gynecologist who charges a lower
rate for PAP smears. So she goes, but not for an HIV test. But the
gynecologist convinces her that testing is empowering. And the way
Christine tells it, why not? In 1992, her world rocked. She had
everything: great job as the managing partner of an import/export
business based in L.A. and Italy, a BMW, world travel, a new house,
friends, family and the chance to finish her college degree at night.
Years have not dulled the texture of that day nine years ago. The
moment when Christine knows. The day is gray, she tells me without
hesitation. The doctor is on the line. "Can you come to my
office? We need to talk." And Christine is thinking, why? So
she asks. The doctor cries. That’s when she knows, it’s
her HIV test. "Oh my God, I felt horrible. There was no one
I could blame. I just sat there thinking: my whole life is ruined,
and I did it myself."
It’s like the aftershocks of a quake. "I tried not to
let it affect me, but it did. I dropped out of school," she
says. "It was hard to go to work, to see my friends. I didn’t
know what to say. I didn’t want to be judged. So I started
attending AIDS functions."
Too raw to share except with those like her, Christine kept her
AIDS world hidden for a time. "I began to lead this double
life," she says. "I was apublic speaker for AIDS Project
Los Angeles, on the board of Women at Risk. I spoke at colleges,
high schools, all the while keeping my HIV status a secret from
my friends and family."
The more she’s indoctrinated into established AIDS rhetoric,
the more things don’t add up. So she starts searching alone
for answers, poring over volumes of research, articles, peer-reviewed
journals. The more she probes, the more complex and conflicting
things appear. "I couldn’t find a citation anywhere that
said HIV causes AIDS."
By the mid-1990s, while working in Bologna, Christine connects with
Dr. Peter Duesberg, a professor of molecular and cell biology at
the University of California, Berkeley. A recipient of a seven-year
Outstanding Investigator Grant from the National Institutes of Health
(NIH) and a Nobel Prize nominee, Duesberg isolated the first cancer
gene through his work with retroviruses in 1970. So he knows about
retroviruses—and HIV is supposedly a retrovirus. And Duesberg
says there’s something wrong with the hypothesis that HIV
causes AIDS.
He starts publishing his theories in top medical journals—Cancer
Research, Lancet, New England Journal of Medicine. Memos from the
Department of Health and Human Services flash to the top players,
including the Surgeon General and the White House. Duesberg is dangerous.
Duesberg loses his NIH funding, his credibility. Then his mental
status is questioned. Still, more than 300 scientists, including
Kary Mullis, winner of the Nobel Prize in Chemistry, join him in
this challenge. "We cannot understand why all this madness
came about, and having both lived in Berkeley, we’ve seen
some strange things indeed," writes Mullis in the introduction
to Duesberg’s book, Inventing the AIDS Virus. "We know
that to err is human, but the HIV/AIDS hypothesis is one hell of
a mistake."
Charles Geshekter, a professor of African history at Cal State University,
Chico, and a member of South African President Thabo Mbeki’s
AIDS advisory panel, says he’s been suspicious about AIDS
and AIDS statistics for years. But when he decided to put together
a scientific panel on the topic in 1994, while section chair for
the American Association for the Advancement of Science, "it
caused a tremendous furor and they tried to close down the whole
meeting…. A few months later I was dismissed from the AAAS."
The way he describes it, it’s not the science of AIDS anymore,
it’s the religion of AIDS. "If you don’t believe,
you’re a heretic," he says. "So the best way to
deal with the dissidents is to ignore them, silence them and wreck
their careers."
Duesberg’s findings, and the work of other notable scientists,
offer Christine solace and helped her form substantive questions
about the dominant belief that HIV causes AIDS. What really bothers
her is that once someone tests HIV-positive (and she puts little
credence in the validity of testing), most doctors treat any subsequent
illness like it’s AIDS. They treat through the lens of HIV,
she says. The way she explains it, if a woman has yeast infections,
the doctor treats them as such. If an HIV-positive woman has yeast
infections, it’s AIDS. She hates the universality of it. "I
think that HIV-positive persons have the right to maintain optimum
health outside the HIV paradigm."
Back in 1995, because she believes in the importance of getting
the word out, she created Alive & Well AIDS Alternative, a non-profit
organization dedicated to opening up dialogue concerning AIDS. She
wants better answers for people with HIV. "There’s so
much tragedy surrounding this…lives are at stake. Right now
they (mainstream scientists and drug companies) have their self-congratulatory
circle, and to question it means no jobs, no funding, no movie stars,
no glory," says Christine. "If I know somebody is doing
something wrong, I consider it my civic duty to make it public….
The best way to resolve it is take the best experts and figure out
what’s going on. To discuss and debate it openly."
Instead they’ve shut her out, blacklisted her. "I was
trying to create dialogue, but nobody is interested in dialogue,"
she says. "What better way than a public forum?”
Charles French is the guy who used to hate Christine. Charles lives
in Los Angeles and is HIV-positive. "I was pissed," he
tells me. What got him riled was an article about Christine and
a benefit concert by the Foo Fighters. "Here you’ve got
this rock star talking to teens about this, and it incensed me."
He decides to take her down and begins orchestrating the moment.
"A friend has a talk show," he says. "He was going
to invite her as a guest to talk about HIV/AIDS. He was going to
play good cop, I’d play bad cop," Charles says. "I
ordered her book, so I could really go after her. But all her work
was referenced so I could look it up. I’m learning things
I never knew. No one ever told me AZT was developed as a cancer
drug. And here I had been taking massive doses of AZT."
Just two weeks before reading the article about Christine, Charles
had stopped the AZT, a little drug holiday, because he was getting
forgetful, too tired. And then he read her book. "I flushed
them down the toilet," he says. "Is our fear of being
wrong so strong that we can’t accept the possibility of another
answer to the very large questions of what is AIDS? As a writer,
this kind of institutionalized castration of thought worries me
a lot."
Charles got his HIV diagnosis when treatment theory was hit hard
and hit early with AIDS drugs. Luckily, says Christine, hers came
earlier because the drugs are killing people. And while researchers
long denied drug toxicity and Christine was even asked to leave
a conference when she called them so five years ago, hit-hard, hit-early
guidelines were relaxed on Jan. 31. According to the National Institute
of Allergy and Infectious Diseases, new research shows the drugs
don’t eradicate the virus and long-term uses can lead to major
toxicity. These revised guidelines say HIV-positive people with
no symptoms should not take the drugs.
Christine asks, "At what cost was hit hard, hit early?"
Her opposition grows, but so does her support. Alive & Well
now has chapters around the world. She was invited as a panelist
to the 13th International AIDS conference in Africa this fall. While
there, she spent time with President Mbeki. "It was very exciting
and very humbling," she says. "My impression is that he
has noticed discrepancies and is frustrated. He’s trying to
get a picture of reality."
This year’s three-time Grammy-nominated Foo Fighters are vocal
proponents. "Initially in talking to Christine, I was struck
by the total lack of support," says Nate Mendel of the Foo
Fighters. After reading Christine’s book, What if Everything
You Thought You Knew About AIDS Was Wrong?, Nate is convinced early
AIDS research is flawed. Following a benefit concert for Alive &
Well in L.A., the Foo Fighters joined the ranks of the dissidents
under fire. Media accounts paint them as irresponsible. But Nate
questions why putting ideas out there is irresponsible, a concept
he finds troubling.
Negative pressure isn’t keeping the Foo Fighters away. Media
jabs are just that, jabs. "I’ve never seen anyone with
more love, passion or dedication put into this issue," says
Nate, talking to me the night before leaving on tour. "I have
the utmost respect for Christine. She is doing a great thing."
And the Foo Fighters will headline another benefit this spring—Rock
the Boat Concert 2001: a concert for democracy—in Miami. The
theme? The pharmaceutical industry’s silencing and demonizing
of AIDS dissidents and the media’s blackout of AIDS information.
The beneficiaries? Alive & Well, along with several other dissident
organizations.
It’s Saturday morning. I’m drinking coffee and talking
with Robin about Christine. Robin Scovill is a filmmaker. He is
Christine’s husband, the father of their three-year-old son,
Charlie. He tells me how he met her before he met her. About how
he’s come to appreciate her perseverance, the way she chips
away at this AIDS thing.
"I think of all these lives she’s touched along the way,"
he says. He relays stories of the meetings she goes to month after
month, sometimes all guys, sometimes all guys wanting to take her
to task. He says lots of them are like Vietnam veterans, but it’s
the AIDS war instead. "Some people write to her and say, I
wouldn’t be alive if it wasn’t for you."
When he tells me this, I remember Christine saying she doesn’t
have a tough skin, and I think this work must be hard sometimes.
She’s naive, but not really. Down to earth, practical, she
loves good food, sushi, Japanese noodles. But Winnie Mandela thinks
she needs to gain some weight.
Christine is beautiful in that natural, Sela Ward kind of way. And
when Robin looks at her, he sees the person he’ll grow old
with. He can’t get all wrapped up in the fear about living
with someone HIV-positive, he says. He tells me about trips to the
beach with Charlie, the way they try to escape the attention for
a while. He tells me about their third date. "We were looking
at these cool handmade Japanese trunks, and I was fascinated. So
I’m asking this guy some questions, but he’s a real
jerk," Robin says. "Then here’s Christine, she’s
holding my hand and says to the guy, ‘You know you’re
a real dick. Here’s this guy who’s interested in your
work,’ and then we just walk away."
"The other thing is," he tells me after about an hour
or so, "she’s got a real taste for irreverence. It all
goes back to questioning. She’s not afraid to ask questions
no one else will. Her dad always taught her, if you find something
wrong, ask a question. If you’re not satisfied, take it to
the next level."
That’s just what Christine is doing. She’s taking it
to the next level, just like Alexander and Lidia. And she believes
in the free exchange of ideas. But how free, really? Is she free
to question those in power? What price will she eventually pay?
Are reporters free to question? When I ask the Centers for Disease
Control about Christine and AIDS dissidents, they tell me, "It’s
a non-issue." Epidemiologists and scientists at several research
institutions, those getting big AIDS dollars, were repeatedly unavailable
when I said I was calling about the dissident view. Who decides
who gets the information?
Are scientists free to challenge? Duesberg lost his grant programs.
Others are portrayed as misguided, unstable, heretics, homophobic.
Even South Africa’s President Mbeki is getting dragged though
the Western media for questioning established reason. They say that
by giving HIV deniers a global platform, he is contributing to genocide.
How will we ever know what is right? Will Christine be forever on
the fringe? Will she be like a one-eyed man in the land of the blind?
I wonder.
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