AIDS TOTS USED AS ‘GUINEA PIGS’ By
“I took the girls out of hell—and the city stole them back”
February 28, 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 of 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
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 that 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
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’
When Hoerger refused to relent, social workers came and took the girls
ACS refused to comment about the case, citing the privacy of the two
“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
“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.
AIDS TOTS USED AS 'GUINEA PIGS'
By Douglas Montero
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
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
"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
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
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
Archdiocese spokesman Joseph Zwilling said experiments at ICC were
halted in 2002. He said he did not know why. Zwilling 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
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
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.
Some of the medical experiments conducted at Incarnation Children’s
WHAT: Study and compare anti-bacterial drugs on kids between the ages
of 3 months and 3 months.
WHY: To.study the long-term safety and tolerance of a combination of
three different bacteria fighting drugs.
DRUGS USED; Azithromycin, Atovaquone and Sulfamethoxazole-Trimethoprim
SIDE EFFECTS: Azithromycin—fever, joint pain, swelling of face, stomach
pain, vomiting. Atovaquone—fever, skin rash, vomiting.
SMx/TMP—hallucinations, sensitivity to sunlight,, allergic skin
WHAT: testing the safety of AIDS drug Recombinant Interleukin-2 or
Aldesleukin on kids ages 3 to 12 years old.
WHY: AIDS medicine was never tested on kids, and adult’s immune system
reacted positively to the drug.
SIDE EFFECTS: Fever, nausea, heart, kidney and liver problems. Used to
treat kidney cancer and can only be administered in a hospital setting.
WHAT: Comparing the effects of new anti-HIV drug combinations on kids
between the ages of 2 and 17 years old.
WHY: Researchers want to test the safety and tolerance level of the
AIDS medicines when two or more are combined.
DRUGS USED: Indinavir; Ritonavir; Nevirapine; Lamivudine; Stavudine
SIDE EFFECTS: Indinavir—blood in urine, kidney stones, abdominal
bloating, muscle wasting. Ritonavir—diabetes, abdominal pains, stomach
bleeding, skin disorders. Nevirapine—liver damage, headaches, nausea,
fatal skin rashes, fever, yellow eyes or skin. Lamivudine—hair loss,
fatigue, body and stomach pain. Stavudine—tingling, burning or pains on
hands and feet, skin rash, muscle and severe stomach pain. AZT—bone
marrow problems, seizures, abdominal discomfort.
DEFENSELESS KIDS’ GUARDIAN AGENCY WON’T COME CLEAN
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
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 date of birth—we just want to know how many
of them came out alive.
By DOUGLAS MONTERO
March 1, 2004 -- Stunned City Council members yesterday called for an
investigation into the use of HIV-infected foster children in
potentially dangerous experiments involving high doses of AIDS drugs.
The reaction comes after The Post reported that some 50 children, some
as young as 3 months old, were involved in 13 studies at Manhattan's
Incarnation Children's Center, a foster care agency run by the
Archdiocese of New York.
Three lawmakers, all members of the council's General Welfare
Committee, which oversees the city's Administration for Children
Services, said they plan to demand an answer on the fate of the
children used in the experiments.
"It's crucial that we get full disclosure," said Councilman Bill
DiBlasio, the committee chairmen, who plans to reach out to ACS
Commissioner William Bell today.
"We need to find out what happened to these kids," he said, adding that
he may hold public hearings on the matter.
Advocates are concerned some children in the experiments, one which
included giving kids a combination of six high powered AIDS
medications, were injured during the studies conducted in the late
1990s by doctors from Columbia-Presbyterian Medical Center.
Some, like Vera Sharav from the Alliance for Human Research and
Protection, are wondering why the experiments were abruptly halted in
2002 and why Columbia-Presbyterian pulled its clinical operation out of
No one from ACS, Columbia-Presbyterian and the Archdiocese of New York
could say if any children were hurt or killed in the experiments. ICC,
which was established in 1989 to house and care for HIV-infected
children left at city hospitals, has refused to talk.
Some side effects to the drugs used include severe liver damage,
tumors, anemia and life-threatening rashes.
Councilman Bill Perkins said he's concerned because of the rumblings
he's heard in the "black community" about children being taken away
from their parents by ACS and used in research studies.
ACS Spokeswoman MacLean Guthrie was unavailable for comment.
"I think the council needs to take aggressive steps to put this in
check," he said. "Clearly, no one knows what's going on . . . We need
to call for a public hearing on this."
Councilman José Serrano Jr. wondered about the consent process and how
the "defenseless" children could have fought off researchers.
"It's an outrage to think that they would use children in foster care
who have already come from abusive situations," he said. "It's
|This article was posted on 3.6.04|