Aids Tots Used as 'Guinea Pigs'

February 29, 2004 permalink

Douglas Montero of the New York Post breaks the story of foster children used as guinea pigs in drug tests. A later article by Kristal Brent Zook in Essence magazine recaps the story

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Aids Tots Used as 'Guinea Pigs'

By DOUGLAS MONTERO, New York Post, (FRONT PAGE)

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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I Took Girls Out of Hell - and City Stole Them Back

By DOUGLAS MONTERO

February 29, 2004 -- Jacqueline Hoerger will never forget the raid of her Nyack home by foster-care social workers who snatched the two HIV-positive sisters she was trying to adopt. Her crime: She was accused of neglect by the girls' doctor because she refused to give them a potentially dangerous cocktail of high-powered AIDS medications that she felt made them sicker.

Hoerger, a pediatric nurse who spent two years as the girls' foster mother, got the children from Manhattan's Incarnation Children's Center, a foster home for HIV-infected kids, where she worked from 1989 to 1993.

There, she watched an array of researchers experiment on HIV-infected children, some as young as 3 months.

She did her job and figured the doctors at Columbia Presbyterian Medical Center, which is affiliated with ICC, knew what they were doing. It wasn't until she was allowed to take the sisters, ages 6 and 4, home in late 1998 that she began questioning the doctors and suspected they were conducting research.

"They were given to me as total wrecks," Hoerger said, describing how the oldest was hyperactive and sickly and the youngest was lethargic, extremely overweight and could barely walk.

She learned the drug cocktails were highly toxic and mostly untested in children after listening to a speech by Dr. Philip Incao, of Denver, who travels across the country questioning current HIV medical practices.

She decided to wean them off the drugs with Incao's help.

That's when the brow-beating began. The Administration for Children's Services, which has admitted to allowing researchers to conduct medical experiments on HIV-infected children, and the Catholic Home Bureau, the adoption arm of the Archdiocese of New York, became the doctors' enforcers.

When Hoerger refused to relent, social workers came and took the girls away.

ACS refused to comment about the case, citing the privacy of the two sisters.

"I gave my blood, sweat and tears to help these children, and we turned them into real kids," said Hoerger, who cared for the girls with her husband, a schoolteacher. "They were just taken away - two healthy kids - taken away.

"I spent a couple of days in total shock," said Hoerger, who despite her run-in the ACS maintains her license as a nurse. "I didn't do anything for two days - I was in total, complete shock."

That was in 2000. She hasn't seen the kids since.

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Defenseless Kids' Guardian Agency Won't Come Clean

By DOUGLAS MONTERO

February 29, 2004 -- THE city's Administration for Children's Services is so busy protecting the privacy of foster kids it won't talk about how those kids were used as HIV guinea pigs.

My questions were simple:

How many HIV foster kids have they allowed to be used in experiments?

Whom could they call for relief if researchers prodded too hard, hurt them, made them cry or made them sick?

These defenseless kids couldn't run home and cry to mommy - their "mother" is the ACS bureaucracy.

From 1998 until 2002, ACS allowed HIV-positive foster kids to be used by scientists trying to solve the mysteries of the scourge illness. About 50 of them at Manhattan's Incarnation Children's Center were used as guinea pigs in the late 1990s.

Scientists push the limit - that's how they discovered penicillin, a researcher once told me.

And that's fine when we're talking about kids whose parents are looking over the doctor's shoulder.

The city's Public Advocate's Office, which looks over the shoulder of ACS, said it was surprised to hear of the policy that allowed HIV infected children to be used as guinea pigs.

"We're concerned because clinical trials are risky and we're concerned ACS just unilaterally signed up these kids," said Advocate's Office spokeswoman Anat Jacobson.

Vera Sharav, the president of the city's Alliance for Human Research Protection, who reviewed 10 of the studies, said some of the studies were purely experimental.

One experiment states the combination of two drugs "has not been approved for use in children and the doses for the combination of the two drugs has not been studied in children." Another study with three drugs flatly states, "This study also evaluates the long-term safety and tolerance of these different drugs."

"This is not for the children's treatment, it's to test experimental drugs," said Sharav, who questioned ACS's decision to give consent for children whose parents can't.

On paper, the 1998 ACS policy sounds strict.

The question is whether ACS's case workers, who oversee 14,000 kids, were in a position to hear the cries of the HIV guinea pigs at night - when there's only a nurse or a $10.75-an-hour Spanish-speaking matron around.

In an e-mailed statement, ACS spokeswoman MacLean Guthrie says that over the past decade a "great number" of advancements have been made in HIV treatment that prolongs the life of infected children.

"Our goal is to ensure that children in foster care have the same access as other children to these treatments," she said.

OK, now show us the proof. Reveal the fate of all the foster children involved in the secret HIV experiments.

We don't want their names, Social Security numbers or dates of birth - we just want to know how many of them came out alive.