I remember Alexander Tedaosh Zielinski. The way life hadnt 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 wasnt prison; it was a childrens 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.
The important thing is to not stop questioning.
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, Ceausescus 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 couldnt 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 couldnt help but think of Alexander and Lidia. There is the same gentle passion, the desire for answers. But like Alexander and Lidia, Christines ideas are far from mainstream, far from those in power. So shes 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 Im wondering why theyre calling her ideas dangerous, irresponsiblewhy 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? Im trying to figure out why scientific discourse is irresponsible. Isnt 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, Im still asking why. And Im thinking it must be because shes 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 Christines ideas? What would those in power have to lose? This years 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 theyve based everything on, is wrong?
Its a fluke that she even went to that doctor. Her friend Judy told her theres 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. Thats when she knows, its 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."
Its 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 didnt know what to say. I didnt 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 shes indoctrinated into established AIDS rhetoric, the more things dont 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 couldnt 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 retrovirusesand HIV is supposedly a retrovirus. And Duesberg says theres something wrong with the hypothesis that HIV causes AIDS.
He starts publishing his theories in top medical journalsCancer 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, weve seen some strange things indeed," writes Mullis in the introduction to Duesbergs 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 Mbekis AIDS advisory panel, says hes 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, its not the science of AIDS anymore, its the religion of AIDS. "If you dont believe, youre a heretic," he says. "So the best way to deal with the dissidents is to ignore them, silence them and wreck their careers."
Duesbergs 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 its 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, its 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. "Theres 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 whats going on. To discuss and debate it openly."
Instead theyve 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?"