Patricia Nell Warren’s Left Field

For years, CNN’s Christiane Amanpour has been saying—not on CNN, of course—that courageous reporting is vanishing from the U.S. major media. In a recent interview, the distinguished anchorwoman stressed the importance of “really asking the questions.” When it comes to AIDS, media often run from the questions. Many TV networks, wire services, and big print publications obediently regurgitate what’s hand-fed to them by the AIDS establishment.

Example: the story about New York City’s Incarnation Children’s Center. ICC is a Catholic-owned group home near Harlem—the city’s only group home exclusively for HIV-positive foster children. Opened in 1989, ICC once enjoyed warm fuzzy media coverage and visits from Princess Diana. Now it’s hit with allegations that, between 1995 and 2002, more than 100 ICC children were illegally used and abused in AIDS research. Black and Latino babies and children from poor families were used as test subjects in Phase I and II clinical trials funded by the NIH and administered by Columbia-Presbyterian Medical Center doctors. 

It’s nothing new for children to participate in AIDS trials, with parental consent. But Incarnation is a foster home—the kids are all wards. Evidently many were seized from their HIV-positive mothers by the city’s Administration for Children’s Services. The ACS then “volunteered” at least 100 children for these trials of vaccines and drugs, including AZT, protease inhibitors, and combinations supplied by GlaxoSmith-Kline, Pfizer, Biocine, Roche, Genentech, and other firms. Some children were shuffled to ICC from area hospitals that were also participating in trials.

In January 2004, the first allegations came from freelance reporter Liam Scheff, who’d been writing about AIDS for Boston’s Weekly Dig. He interviewed ICC’s medical director, a former ICC pediatric nurse, and several worried parents whose children were at the home. Scheff wrote: “When the children refuse the drugs, they’re force-fed. If the kids continue to refuse, they’re given a surgery to implant a plastic tube through their abdomen into their stomach. The drugs are then injected directly into their stomachs—no refusing.”  Scheff alleged that several children had died as a result of treatment side effects.

There are other “real questions.” Phase I and II trials involve the highest risk, because they do the first explorations of safety, toxicity, dose tolerance. In 1989 the FDA approved the highly toxic AZT for children under thirteen on a “compassionate use” basis, though clinical trials were still in progress. Yet just a few years later,  it was mandatory for HIV-positive mothers to allow their children to be treated, or face loss of custody, even criminal charges. How was this policy shift justified, when Phase I and II drug trials were still ongoing? Even today, government officials admit at www.clinicaltrials.gov that they still don’t know the long-term effects of HIV drug treatments on infants and growing children. Why have major media parroted the government reassurances instead of asking real questions about children’s treatment safety?

Was the ACS acting in the best interest of its ICC wards when it consented to these experiments? More and more, medical research is riddled by conflict of interest. New York City’s child-welfare agency has already been under fire for tolerating child abuse and mismanagement, and was being monitored to improve performance.  Was a conflict of interest created when ACS, which gets federal funding, obligingly granted federally funded researchers the access to its vulnerable child clients?

Medical research is also more commercially driven today. Don’t billions in profits stand to be made from global use of AZT and nevirapine, the drugs of choice for use in developing countries, mostly on people of color? Is this why researchers and pharmaceuticals were so interested in the black and Latino foster children at ICC? Were the kids, in effect, a handy pool of potential subjects—over 700 of them since ICC opened—whose parents couldn’t make waves because they lacked custody and money for lawyers? Would the media have asked questions sooner if middle-class white foster kids were “studied” without their parents’ consent?

Scheff’s story made a low-profile debut on www.AltHeal.org, and hit an instant nerve. According to Scheff, indie media grabbed the story and reposted it around the world, translating it into several languages. In Britain, where media are more gutsy about AIDS controversy, The Observer and The Guardian ran their own stories.  But in the U.S., only the conservative New York Post did significant coverage. On February 4, the Post ran a tabloidy headline: AIDS TOTS USED AS GUINEA PIGS. The paper revealed that state health department officials were launching a probe, and they interviewed Scheff but failed to credit him for breaking the story.

The next real question exploded from the Alliance for Human Research Protection, a national network concerned with ethical conduct of scientific experiments. AHRP contacted the city, alleging that the ICC trials “may violate federal regulations that restrict the use of children who are wards of the state as experimental subjects.” By March 1, the shocked City Council was finally asking its own questions. They wanted to know if any children had died during the trials. They asked why the studies suddenly shut down in 2002 and Columbia-Presbyterian doctors pulled out. There was talk of public hearings.

At the moment, all parties involved in the studies must be considered innocent unless found guilty. But if the allegations prove true, what might constitute “justice” for dozens of children and families whose lives may have been negatively impacted by this research? And my final question: Will the major media finally “discover” this story, and all its explosive issues—a story that has been breaking right under their noses for several months now?

Further reading:

Liam Scheff story: www.altheal.org/texts/house.htm

Alliance for Human Research Protection statement: www.ahrp.org/ahrpspeaks/HIVkids0304.html

Government listing of current pediatric AIDS trials: www.clinicaltrials.gov/ct/show/NCT00006304?order=2

Patricia Nell Warren, author of fiction bestsellers like The Front Runner, also writes provocative commentary. Her writings are archived at www.patricianellwarren.com. Reach her by

e-mail at patriciawarren@aol.com.

May 2004

Copyright © 2004 by Patricia Nell Warren. All rights reserved.