week, the BBC aired a documentary entitled “Guinea
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.
basic accusations were leveled.
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.
second accusation: the drugs administered to children as young as
three-months-old did not demonstrably extend their lifespan but
did inflict harm and great suffering. Children who resisted were
force-fed drugs through a peg-tube
inserted into their stomachs.
charges merit both skepticism
and thorough investigation. But, with ACS stonewalling, facts are
hard to come by.
facts are known.
the 1990s, experimental anti-AIDS drugs were administered to foster
children in ACS custody. In response to the BBC’s accusations, GSK
those trials by saying that the Food and Drug Administration
encourages pediatric testing.
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
issue of legal authority lies at the heart of the first accusation:
namely, that ACS overruled the objections of legal guardians.
focused on the case of 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.
workers charged Hoerger with child abuse and removed the girls from
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.”
Britain hurls the added indictment of racism at ACS because the
vast majority of the HIV-positive children are black, like Garfield,
second basic charge leveled by the BBC is that the administered
drugs harm rather than help the children.
Rasnick, an expert on AIDS drugs, offers a heartbreaking description
of what the children might suffer.
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.”
is difficult for a layperson to evaluate medical claims of harm.
difficulty is increased by the silence rather than answers offered
by ACS, the drug manufacturers and those who conducted the trials.
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.”
an atmosphere of secrecy, the worst scenarios assume credibility.
Vera Sharav, President of the Alliance for Human Research Protection,
“there appears to be a policy of giving drug firms access to them
the facts are to “play out” and the worst is not to seem credible,
then ACS needs to act in an uncharacteristic manner and respond
to public concern.
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.”
example of that power: the ACS does not require a court order to
place HIV children in foster care and on drug trials.
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.”
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.
without accountability is an invitation for abuse. Nothing short
of transparency will make the hideous accusations raised by “Guinea
Pig Kids” go away.
McElroy [send her mail]
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).