February 28, 2007

Ms. Chitra Bharucha
Acting Chair of the BBC Trust
BBC Complaints
P.O. Box 1922
Glasgow G2 3WT
United Kingdom

Dear Ms. Bharucha:

I am writing with regard to the January 10, 2007, letter of complaint to the BBC submitted by a group of AIDS scientists who demand that “editorial support” for the documentary film Guinea Pig Kids be removed from your Web site and that you post an apology in its place.

Click here for the original complaint letter.

The BBC documentary (coproduced with NDR, German public television) accurately describes how the Incarnation Children’s Center (ICC), a New York City foster home for children who have been orphaned or separated from their parents, enrolled its mostly black and Latino residents into experimental drug trials. As the film correctly shows, these infants, children and teenagers--with no voice of their own and without advocates to speak on their behalf--were used as “guinea pigs” in a variety of studies, from toxicity tolerance tests to trials of experimental vaccines.

Thanks to the BBC exposé and other investigative reports in the U.S. and Europe, the disturbing practices at the ICC came to the attention of human rights organizations and local government agencies, prompting hearings, investigations and media coverage that continue to this day. In fact, the February 2007 issue of Essence magazine contains a feature article inspired by the BBC’s courageous film. (Initial stories ran in the New York Post, New York Press, Fox News, and others.)

Those calling for censorship of Guinea Pig Kids are funded by manufacturers of many of the drugs used in the ICC experiments, and their letter of complaint misrepresents a number of vital issues in addition to making several misleading claims. To cite a few examples:

• The complainers assert that the experimental drug trials conducted at ICC provided “appropriate treatment” to impoverished children. This is not true. If the safety and efficacy of a new drug, drug dosage or drug combination were known, there would be no need for a clinical trial.

• The complainers incorrectly state that the “characterization of the children as guinea pigs placed in experiments without parental permission is false and misleading.” Information from ICC’s own former Web site, as well as the Web site of the U.S. National Institutes of Health (NIH) (www.clinicaltrials.gov), indicates that ICC used children to test not only unusually high numbers of drugs (mixtures of up to eight drugs) but also at doses that were significantly higher than normal. Also, most of the tests were Phase I and II trials, which means they posed the highest level of risk without much possibility of benefit to the children. The primary objective of these trial phases is not to provide therapy to the patient-subjects. Phase I tests assess the toxicity of a drug, and Phase II assess whether a drug has any impact whatsoever on the targeted disease.

• Regarding “parental permission,” the documentary also shows that the guardians of these children would lose custody if they refused to dose their children with AIDS medications, even when removal of the medications resulted in dramatically improved health.

• The complainers argue that “where parents were unavailable, the state and the children’s institutional guardians [determined] their best interests.” Clinical trials can bring significant funding to institutions and individual doctors. This situation sets up a conflict between the interests of the children and of their institutional guardians. Blatant conflicts of interest include the fact that Dr. Stephen W. Nicholas, who ran ICC until 2002, was simultaneously a member of the Pediatric Medical Advisory Panel of the New York Administration for Child Services. Such conflicts undermine a government foster care system’s ability and desire to protect the children in its care.

• The complainers also wrongly claim that the experiments “on vulnerable children of color . . . were . . . crucial and successful efforts to make lifesaving treatments available to desperately ill foster children[.]” AIDS drugs have never been tested to completion against a placebo in order to establish if they are “lifesaving.” Furthermore, AIDS drugs are usually tested using “surrogate markers,” not clinical health or increased survival, as measures of success. Far from being “lifesaving,” the AIDS drugs used on children at ICC carry an exceptionally high risk of serious adverse effects because of their interference with basic cellular metabolism. Commonly noted adverse effects include serious anemias, liver disease, heart disease, pancreatitis, life-threatening skin disorders, muscle wasting, physical deformities, and bone necrosis. (For referenced citations of adverse effects, please see www.rethinkingaids.com/quotes/azt.html and www.rethinkingaids.com/quotes/haart.html.)

• The complainers protest that one of the photographs used in the film, depicting a child with a severe rash typical of Stevens-Johnson syndrome, was not of a child at ICC. But Stevens-Johnson syndrome is a recognized side effect of AIDS drugs used at ICC, particularly nevirapine. The photograph of a baby covered with a blistering rash typical of this syndrome was therefore an appropriate illustration.

• The complainers write: “The trials were terminated in 2002.” However, in October 2003, the ICC’s medical director, Dr. Katherine Painter, confirmed in an interview that trial regimens were continuing. (See www.altheal.org/toxicity/orphans.htm.) As recently as 2005, ICC was still listed on the NIH’s clinical trials list (cited above). Even if the trials had stopped at ICC, the same NIH-sponsored trials involved other institutions across the U.S. Annie Bayne, spokesperson for Columbia University Medical Center (one of the many places where the trials were carried out), has advocated that the trials be extended to Africa and Asia. Even if the AIDS experiments were no longer being carried out on the children at the ICC in New York City, poor and parentless children are still being targeted for AIDS drug experiments.

• The complainers assert that neither ICC nor any other center where drugs were administered to children used gastrostomy tubes to deliver medications to resistant children, and that these tubes were “not a punishment for refusing to take medication.” But there is no question that gastrostomy tubes were used at ICC. The ICC Web site once hosted a picture of a child with a visible gastrostomy tube, and Dr. Painter acknowledged that “for some cases [the drugs are] better administered through a g-tube.” (See October 2003 interview, cited above.) Dr. Painter’s comments clearly show that non-compliance was an issue and the G-tube was the solution.

• Children were enrolled in trials based on dubious assumptions. In some cases, children had not tested HIV positive but were medicated only because their mothers, often drug addicts, tested positive for HIV antibodies--even though antibody tests clearly do not detect actual virus. In other cases, children with unconfirmed HIV status were treated as though they had tested HIV positive. The New York State Department of Health Guidelines for Clinical Care of Adolescents and Children with HIV Infection note:

“[I]n the uninfected infant, passively acquired maternal IgG antibodies disappear on average in 7 to 10 months, but may occasionally persist until 18 months. Therefore, a positive HIV antibody test in the young infant merely confirms maternal HIV infection but is not diagnostic for HIV infection specific to the infant.”

(See www.hivdent.org/pediatrics/dohdoh11/1section1iii.htm.)

• The complainants reiterate the conclusion of Los Angeles County coroner Dr. James K. Ribe that Eliza Jane Scovill, whose mother, Christine Maggiore, appears in the film, died of AIDS. This claim is contradicted by physical evidence found at autopsy, the lack of laboratory evidence of positive HIV status for Eliza Jane, and a detailed analysis by a pathologist, published in the medical literature. The claim that Eliza Jane died of AIDS also contradicts a previous statement made by the complainers’ lead author, Jeanne Bergman, in a 2005 New York Press article in which she claimed that Maggiore was not HIV positive:

“Maggiore has no ‘fear of AIDS’--she doesn’t have HIV. She has since had two children, now three and seven years old, whom she boasted . . . ‘have never been tested.’ . . . But of course Maggiore didn’t want them to be tested: she knows that they are not at risk and that their being uninfected would lead people to question her own status. And of course they don’t take ‘AIDS drugs’--they don’t have HIV or AIDS.”

In responding to the letter of complaint, we urge the BBC to refuse censorship of this vitally important film, continuing the courageous stance that led to the pursuit of this story. We request that coverage of Guinea Pig Kids remain on the BBC Web site and that no apology be issued for what is an accurate report.

Yours sincerely,

Etienne de Harven, M.D., Ph.D.
President
Rethinking AIDS: The Group for the Scientific Reappraisal of the HIV/AIDS Hypothesis
Phone: +33-4-93-60-28-39
Saint Cézaire, France

Alternate contact:
David Crowe
Media Relations
Phone: +1-403-289-6609
Mobile: +1-403-861-2225
Calgary, Canada

E-mail: correspondence@rethinkingaids.com
Web site: www.rethinkingaids.com

cc: NDR/ARD (German public television)

Rethinking AIDS: The Group for the Scientific Reappraisal of the HIV/AIDS Hypothesis (“RA” or “the Group”) was formed in 1991 to express the concerns of a growing number of renowned scientists and medical doctors about HIV research and the resulting human rights abuses. In 1995, by a letter published in the journal Science, the Group called for a thorough reappraisal of the existing evidence for and against the HIV/AIDS hypothesis and recommended that critical epidemiological studies be undertaken.

Among RA’s founders are Harvard microbiologist Dr. Charles Thomas; 1993 Nobel laureate for chemistry Dr. Kary Mullis; Nature Biotechnology co-founder Dr. Harvey Bialy; University of California at Berkeley molecular biologist Dr. Peter Duesberg and the late Yale mathematician Dr. Serge Lang, both members of the National Academy of Sciences; professor of medical physics at the Royal Perth Hospital in Western Australia Dr. Eleni Papadopulos; and Glasgow University professor emeritus of public health and World Health Organization consultant Dr. Gordon Stewart.

The Group’s current president, Dr. Etienne de Harven, is a professor emeritus of pathology at the University of Toronto and a former cancer researcher at Sloan-Kettering Institute, New York (1956-1981). He produced the first electron microscopic studies of a retrovirus (the murine Friend leukemia virus) and was director of the Electron Microscopy Laboratory at the Banting Institute, Department of Pathology, University of Toronto.