The Trials and Tribulations of Christine Maggiore

By Kathleen Phalen
Gadfly 11 June 2001

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 HIV 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 a public speaker for the AIDS project in Los Angeles. I spoke at colleges, high schools, all the while keeping it (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.