November 9, 2007
HARD TO SAY I'M SORRY
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AIDS misinformation isn't a game |
Three years ago, Jeanne Bergman was surprised to learn that a respected pediatric AIDS nursing facility, the only one of its kind in New York, was under attack. Bergman, a Housing Works alum and AIDS activist now with AIDStruth.org and the Center for HIV Law and Policy, discovered that Incarnation Children’s Center (ICC), a residence in Washington Heights which provides specialized care for children and teens living with HIV/AIDS, had been demonized by an HIV denialist propaganda film called Guinea Pig Kids. The independently produced film, which was aired by the British Broadcasting Corporation (BBC) in 2004, purported to expose the use of children of color in “futile” and “dangerous” medical experiments.
Bergman looked closely at the film, compared the innuendo against the facts, and, with other advocates and scientists, brought a series of complaints to the BBC. Two weeks ago, the media website of the U.K. paper, The Guardian, reported that Bergman’s efforts were beginning to pay off. In unpublished documents examined by the Guardian, the BBC apologized after admitting that the film contained “serious breaches” of its editorial guidelines on accuracy and impartiality. The BBC further conceded that the film intentionally ignored the life-saving efficacy of the drugs being studies, and it was fundamentally biased towards the views of “HIV denialists.”
The BBC’s adjudication of the complaint and apology can be read at http://www.hivlawandpolicy.org/resources/BBC%20July31%202007%20letter.pdf
Getting the BBC to apologize is only the tip of the iceberg for Bergman, who is involved in a larger project to expose the dangers of HIV denialism and to ensure that everyone with HIV, including children in the foster care system, has access to accurate information and the best available treatment. Bergman recently stopped by the Update to tell us how it all went down and what she's working on now.
AIDS Issues Update: When did you first learn about the film, Guinea Pig Kids?
I learned about the film when I heard that demonstrations were happening outside of Incarnation Children’s Center (ICC), charging that the ICC was doing terrible medical experiments on helpless children against their will and the will of their families. I had some knowledge of what the ICC did and their extraordinary accomplishments, and it didn’t seem right. I investigated online and learned about the video, recognized that it was made by denialists, and I read what had been said about it. Then I sent an e-mail to the BBC saying 'This is crap, you know, take down your web page.' I also wrote a piece about it for the Update.
In fact, you’ve been tracking this story for three years now, trying to get the BBC to apologize for the damage it caused by showing the film. Why was it so important for you to get some sort of an apology out of the BBC?
To understand that, you need to look at the whole arc of this story. The attack on the ICC was coming from folks who were HIV denialists, trying to stir up a controversy where there shouldn’t have been one. HIV denialism is a pretty marginal point of view, since most people know that AIDS is real and that it is caused by HIV. Since the people behind the attack on ICC don’t think HIV is a threat to health, they think it’s wrong to give people with HIV the medicines used to treat it—experimental or otherwise. A denialist blogger in New York saw the possibilities of spinning the ICC story into a sensationalist scandal—poor black and Latino kids, most of them orphans, getting these sometimes really difficult drugs on an experimental basis. But the story was so lurid, so over-the-top, that it didn’t have legs until the supposedly reputable BBC picked it up. When they aired the denialist film, it gained a kind of legitimacy in many people’s minds. Suddenly, folks who should have known better were buying it, hook, line and sinker.
But the reputation of the BBC aside—if the story was that outrageous, why do you think so many people were inclined to believe it?
First, the history of medical research in the African-American community has been one of truly ghastly exploitation, so we are primed to accept that this could happen because it has happened. Second, the Administration for Children’s Services historically has not always done the best job protecting children. In fact, in New York, in the past, ACS has too often failed to protect children, while at the same time, being perceived as high-handed, arrogant and destructive in its relationships with families, especially families of color. I think that has changed substantially under the current commissioner, but there’s still a lot of suspicion.
So, what sort of damage occurred as a result of the BBC’s decision to air Guinea Pig Kids?
I am most concerned about the filmmakers slipping denialist disinformation into the communities most devastated by AIDS by exploiting legitimate fears of medical exploitation. HIV denialism undermines AIDS prevention and health care access, and that’s the greatest damage. I’m also concerned about foster children’s access to medications. The Administration of Children’s Services responded really honorably to these events, initiating an investigation by an independent outside agency at a cost of some two million dollars; that is still on-going. If there were any problems with informed consent or anything else to do with these clinical trials, they will find them and hold people accountable and prevent them from happening again. But I am very concerned the publicity this has generated is resulting in foster children being denied access to clinical trials, even when—as in the HIV pediatric clinical trials—they are for drugs that have been extremely effective in adult populations, or in cases where trials are the only way you can get access to drugs which might literally save your life. I consider that an issue of unequal access. Kids who are desperately ill should not be denied access to medical treatment, including treatment that is only available through clinical trials, simply because they don’t live with their birth parents.
And how is the ICC doing now?
I don’t really have a relationship with ICC. To my knowledge, it’s been about a year since the last demonstration, but you must understand, it was extremely tense. The kids who lived there had to deal periodically with people who were yelling at them that they were being cared for by murderers.
So what do you think the BBC should do to help make things right?
The BBC still has web pages up that are connected to the video, so they are continuing to make this misinformation available to the public. That needs to stop; the web pages must come down. They also need to formally and publicly retract the film and apologize. I think it would be great if they did a film that helped viewers understand how AIDS clinical trials work, why they are necessary if we want new and more effective drugs, and how participants are protected.
What about the ongoing damage caused by the denialist movement? What about it most concerns you?
Denialism is a barrier to prevention and a barrier to treatment. It especially affects communities of color, particularly African Americans, whose experience with exploitation, disinformation and lies predisposes them to accept stories like the ones told in Guinea Pig Kids, and, with them, lies about HIV. Denialism persuades people who need health care and medication to reject the access to treatment that AIDS activists have fought for from the beginning of this epidemic.