AIDS TOTS USED AS 'GUINEA PIGS'

New York Post
February 29, 2004


The state Health Department has launched a probe into potentially dangerous drug research conducted on HIV-infected infants and children at a Manhattan foster-care agency, The Post has learned.
Some 50 foster kids were used as "guinea pigs" in 13 experiments with high doses of AIDS medications at Manhattan's Incarnation Children's Center, sources said.

Most of the ICC experiments were funded by federal grants and in some cases, pharmaceutical companies. They used city foster children, who were sent to the Catholic Archdiocese-run facility by the Administration for Children's Services.

ICC was involved in 36 different experiments, according to the National Institutes of Health Web site. One study researched "HIV Wasting Syndrome," which studied how a child's body changes when his medication is altered.

A handful of the experiments involved combining up to six AIDS drugs - so-called "cocktails" - in children as young as 3 months, and another explores the reaction of not one, but two doses of the measles vaccine in kids ages 6 to 7 months.

Other studies tested the "safety," "tolerance" and "toxicity" of AIDS drugs.

"They are torturing these kids, and it is nothing short of murder," said Michael Ellner, a minister and president of Health Education AIDS Liaison, an advocacy group for HIV parents.

Biochemist Dr. David Rasnick, a visiting scholar at the University of California at Berkeley and an expert in AIDS medication, was outraged because the drugs, alone or combined, have "acute toxicity which could be fatal."

He said the drugs' side effects include severe liver damage, cancerous tumors, severe anemia, muscle wasting, severe and life-threatening rashes and "buffalo hump," where fatty tissues accumulate behind the neck.

Housed in a former convent and run by the Archdiocese of New York's Catholic Charities, the foster-care agency described the experiments on its own Web site, which was abruptly shut down after The Post began making inquiries.

Archdiocese spokesman Joseph Zwilling said experiments at ICC were halted in 2002. He said he did not know why. Zwil- ling also said he did not know if any children had died.

An ACS spokeswoman said the agency hasn't approved any new experiments since 2000 because the "risks outweighed the benefits." She declined to explain further. That agency is also reviewing its files on the case.

Jacqueline Hoerger was a pediatric nurse at ICC from 1989 to 1993 and said the experimentation was going on even back then. "We were taught that any symptom we saw was HIV-related," said Hoerger, 43. "The vomiting, diarrhea, wasting syndrome, the neurological side effects - they were dying. There was death."

She didn't think doctors were doing anything wrong, however, until years later, when she tried to adopt two of the foster girls. When she refused to give the kids the center's high-powered AIDS cocktails for fear it was making them sicker, ACS had social workers take the children away from her.

Advocates for children question the ethics of experimenting on foster kids - especially those too young to know what's happening to them.

"The most vulnerable, disadvantaged children are being exploited by powerful entities and used as guinea pigs as if they were not human beings," said Vera Sharav from the Alliance for Human Research and Protection.

The tests were conducted by doctors from Columbia Presbyterian Medical Center, which was affiliated with ICC until 2002 and reaped the financial benefits of the research.

"Through these trials, children at the ICC outpatient clinic gained access to state-of-the-art treatments for HIV," said Annie Bayne, a Columbia spokeswoman.

ACS policy states it seeks parental consent before a child is enrolled in a study. If the parents cannot be found, ACS's medical and legal divisions, and its commissioner, must all approve.

The condition, however, is that the experiment "offer each participating child a significant potential benefit, a concomitant minimal risk of injury or harm," ACS spokeswoman MacLean Guthrie said.

Fire Commissioner Nicholas Scoppetta, who headed ACS at the time of the experiments, refused comment.

Officials at ICC, which was established in 1989 to house and care for HIV-infected "boarder babies" left stranded in city hospitals, refused to talk to The Post.
 
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