"Mother" is a Bureaucracy
11 March 2004
Were HIV-positive infants and children in the Manhattan foster care system used as guinea pigs in medical experiments?
infants and children in the Manhattan foster care system used as guinea pigs
in medical experiments? That question is at the heart of a potential scandal
that could propel child welfare systems in North America toward greater transparency
On February 29, the New York Post exposed the problem in three articles by Douglas Montero: The first,
"AIDS Tots Used as 'Guinea Pigs,'" claimed that about 50 children had been
used in 13 medical experiments, some involving high doses of AIDS medications,
at Manhattan's Incarnation Children's Center. The Post later revised
the number to 100 in the light of data released on March 1 by New York City's
Administration for Children's Services, following a review of their files.
The second article,
"I Took Girls Out of Hell and City Stole Them Back," was the story of Jacqueline
Hoerger, a pediatric nurse and foster mother to two girls from ICC, where
she had worked from 1989 to 1993. Social workers took the girls from Hoerger
because she refused to administer AIDS medications that she learned were
"highly toxic and mostly untested in children."
At ICC, Hoerger says she witnessed experimental treatment "on HIV-infected children, some as young as three months."
In the third piece,
an op-ed entitled "Defenseless Kids' Guardian Agency Won't Come Clean," Montero
posed his questions for the ACS: For example, "how many children were involved?"
And, to whom could the children "call for relief if researchers prodded too
hard, hurt them, made them cry or made them sick?"
In other words, what authority supervised the treatment of children who had no parent or foster parent to render consent?
The ACS assigned the children to the studies, but the agency lacks the medical
expertise to evaluate whether the application of an experimental treatment
is appropriate or abusive. Moreover, according to Anat Jacobson, a spokeswoman
for the Public Advocate's Office that serves as a watchdog to the ACS, her
agency had no knowledge of the experimental treatments.
Jacobson expressed concern that the ACS might have "just unilaterally signed up these kids."
The ACS could answer Montero's questions, but instead, it seems to be invoking
privacy concerns in order to remain silent. When questions involve aggregate
numbers and protocol, however, there is no privacy issue. And there are well-established
methods for discussing medical studies that preserve the anonymity of subjects.
In the presence of official silence, the facts alleged gain credibility.
What are they? A good place to begin is with the ICC, which is run by the
Archdiocese of New York's Catholic Charities and was opened in 1989 to provide
residential and outpatient medical care for HIV-infected children. The ICC
has conducted dozens of experimental medical studies, most of which were
funded by federal grants or -- more controversially -- by pharmaceutical
One of the ICC's experimental studies, sponsored by the National Institutes of Health, was entitled "HIV Wasting Syndrome."
Its purpose was "to see how beginning or changing anti-HIV medications affects
the body composition ... of HIV-infected children."
No one could fault researchers for administering appropriate drugs to sick
children and monitoring the results, especially when the children might not
otherwise receive treatment. But questions immediately arise concerning studies
that purportedly tested the "safety," "tolerance" and "toxicity" of AIDS
drugs. Or one that tested the reaction of HIV-positive children, ages six
to seven months, to the injection of two doses of measles vaccine. The ICC
used to offer descriptions of such experiments on its web site, which became
abruptly inoperative in the wake of the Post's investigation. Without data, how can the validity be judged?
News of the experiments is already fueling outrage. "They are torturing these
kids, and it is nothing short of murder," Michael Ellner of Health Education
AIDS Liaison declared of the experiments that ended in 2002.
Biochemist Dr. David Rasnick, an expert in AIDS medication, reviewed the
AIDS drugs administered to the children and concluded that alone, or in combination
as they often were administered, the drugs had "acute toxicity which could
ACS must be forthcoming. Silence or bureaucratic answers aren't going to
work this time. Driven by criticism by officials such as New York City Councilman
Bill DiBlasio, the New York Health Department is beginning to investigate.
Moreover, the "scandal" has hit the international press. A headline in last week's Japan Today announced, "HIV-infected kids in New York used as 'guinea pigs.'" A site in France and a newspaper in the U.K. echoed the accusation. Too many eyes are watching.
It is usually parents who look out for children -- comfort their tears, shield
them from abuse, and make wrenching decisions about their welfare. Who comforted
and protected the parent-less, HIV-positive infants and children at ICC?
I hope there were hospital staff who held each sick child in their arms and
wanted nothing more than to heal the pain.
But data has disappeared. Archdiocese spokesman Joseph Zwilling reportedly
told journalists that he did not know why the experiments stopped in 2002
or whether any of the children had died. Nicholas Scoppetta, who headed ACS
during the experiments and has since left the agency to become New York City's
current fire commissioner, will not comment.
Hopes are not enough. For once, a child welfare system must have the courage and decency to open itself to public scrutiny.
Wendy McElroy is the editor of ifeminists.com
and a research fellow for The Independent Institute in Oakland, Calif. Her
new book is Liberty for Women: Freedom and Feminism in the 21st Century.
Reprinted with permission of ifeminists.com.
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