Last week, the BBC aired a documentary entitled "Guinea Pig Kids."
It accused New York City’s Administration for Child Services and drug companies, such as Glaxo SmithKline (GKS), of experimenting on HIV-positive foster children with untested and dangerous anti-AIDS drugs.
Two basic accusations were leveled.
First, parents or guardians who refused to consent to the trials claim that children were removed by ACS and placed in foster families or children’s homes. Then, acting over their objections, ACS authorized the drug trials.
The second accusation: the drugs administered to children as young as three-months-old did not demonstrably extend their livespan but did inflict harm and great suffering. Children who resisted were force-fed drugs through a peg-tube inserted into their stomachs.
The charges merit both skepticism and thorough investigation. But, with ACS stonewalling, facts are hard to come by.
Some facts are known.
In the 1990s, experimental anti-AIDS drugs were administered to foster children in ACS custody. In response to the BBC’s accusations, GSK defended those trials by saying that the Food and Drug Administration encourages pediatric testing.
"[C]linical trials involving children and orphans are therefore legal and not unusual," the company said. GSK called the trials "appropriate" as long as they are "in compliance…with the various state and federal laws and regulations regarding legal authority in the case of minors."
The issue of legal authority lies at the heart of the first accusation: namely, that ACS overruled the objections of legal guardians.
Montero focused on the case Jacklyn Hoerger, as did "Guinea Pig Kids." A pediatric nurse, Hoerger became foster mother to two HIV-positive girls who received treatment at Manhattan’s Incarnation Children's Center. (ICC is one of the sites implicated in the experiments.) Convinced that the "highly toxic" drugs were harmful, not beneficial, Hoerger stopped administering them and pursued alternate treatment. The girls’ health reportedly improved significantly.
Social workers charged Hoerger with child abuse and removed the girls from her custody.
Since Montero’s articles, similar stories have emerged through the BBC and elsewhere. One child, identified only as Garfield, was removed from his grandmother’s care when she stopped giving him drugs that seemed to make him ill. According to the news site Black Britain, Garfield was then placed with a foster mother who "receives $2000 per month to look after him, because she is prepared to give him the medication."
Black Britain hurls the added indictment of racism at ACS because the vast majority of the HIV-positive children are black, like Garfield, or Hispanic.
The second basic charge leveled by the BBC is that the administered drugs harm rather than help the children.
Dr. David Rasnick, an expert on AIDS drugs, offers a heartbreaking description of what the children might suffer.
"We're talking about serious, serious side-effects. These children are going to be absolutely miserable. They're going to have cramps, diarrhoea and their joints are going to swell up. They're going to roll around the ground and you can't touch them." Dr Rasnick called some of the drug combinations "lethal" and further observed, "The young are not completely developed yet. The immune system isn't completely mature until a person's in their teens."
It is difficult for a layperson to evaluate medical claims of harm.
The difficulty is increased by the silence rather than answers offered by ACS, the drug manufacturers and those who conducted the trials.
Advocates such as Michael Weinstein, President of AIDS Healthcare Foundation (the largest AIDS organization in the United States), have called for disclosure. He writes, "These are very serious allegations and we will have to wait to see the facts play out…GSK is being accused of exploiting one of our most vulnerable populations."
In an atmosphere of secrecy, the worst scenarios assume credibility. Vera Sharav, President of the Alliance for Human Research Protection, comments, "there appears to be a policy of giving drug firms access to them [the children]."
If the facts are to "play out" and the worst is not seem credible, then ACS needs to act in an uncharacteristic manner and respond to public concern.
The ACS is one of the most powerful child welfare agencies in North America. The BBC observed, "The ACS, as it is known, was granted far-reaching powers in the 1990s by…Mayor Rudi Giuliani, after a particularly horrific child killing."
An example of that power: the ACS does not require a court order to place HIV children in foster care and on drug trials.
According to family lawyer David Lansner, "They’re essentially out of control. I’ve had many ACS case workers tell me: ‘We’re ACS, we can do whatever we want’ and they usually get away with it."
If the ACS has respected parental and guardian rights, then its files should document the fact. If the ACS has honored laws that require potential benefits to children in medical trials to outweigh risks, then records are the proof.
Power without accountability is an invitation for abuse. Nothing short of transparency will make the hideous accusations raised by "Guinea Pig Kids" go away.
Wendy McElroy is the editor of ifeminists.com and a research fellow for The Independent Institute in Oakland, Calif. She is the author and editor of many books and articles, including the new book, "Liberty for Women: Freedom and Feminism in the 21st Century" (Ivan R. Dee/Independent Institute, 2002). She lives with her husband in Canada.