The Incarnation Children's Center Investigation
Orphans Used in Clinical
Trials, reporting by Liam Scheff 2003-2009
Warning, may bring
tears to your eyes.
April 28, 2007The AIDS
Investigation
By Liam Scheff
New York Press, July
27 – August 2
The Great Lord Fauci sacrifices he demanded from his venturesome
“volunteer” babies for “the greater good”.
He thought doing this he could cure Aids. Sacrificing babies using them as human
subjects. So, they die, who cares.
Mimi Pascual gave the
children drugs every day and every night, on schedule, as the doctors ordered. She shook the
children awake and popped the pills into their mouths, or squirted a syringe
full of ground pill and water to the back of their throats.
She and the other
child-care workers made the rounds: midnight, 3 a.m., 5 a.m. Some kids took the
pills by mouth, some through nasal tubes, and some through tubes jutting out of
their stomachs.
The children didn’t
like the drugs. They’d wake up vomiting or with bad diarrhea. But Mimi and the
workers at Incarnation Children’s Center had to follow the regimen, or they’d
be fired. “The drugs had side effects, everybody knew that,” said Mimi. But the
workers were told the drugs were saving the children’s lives.
After a young girl who
had just gone on the drugs had a stroke and then quickly died, and another
young boy who was put on thalidomide wasted away on a respirator, Mimi stopped
believing that the drugs were just saving lives. She believed they were killing
the children too.
Mimi Pascual worked at
Incarnation Children’s Center for eight years over a nearly 10-year period,
taking care of the abandoned HIV-positive children of drug-addicted mothers in
New York City’s Washington Heights neighborhood. She started at ICC in
1995, when she was just 17. Mimi was one of two dozen neighborhood women from
Washington Heights, Harlem and Inwood Heights who were hired by the Catholic
nuns who ran the orphanage for abandoned babies.
Like Mimi, the vast
majority were originally from the Dominican Republic, and had no medical
background. Some spoke only negligible English. But they were all mothers,
aunts, big sisters and grandmothers themselves, used to taking care of large
families on a shoestring, to keeping life together under great stress, and, as
Mimi tells me, used to “cleaning ass,” a skill that was useful at ICC.
Hired as a child-care
worker, she soon found herself a surrogate mother to the children, changing
them, feeding them, holding and hugging them—and drugging them.
“At first they were
little babies,” Mimi told me. “We changed their diapers and cleaned them up,
and played with them. We were told they were ‘special‘—because of the HIV.
There was a lot of shit and a lot of throwing up.”
“They needed a lot of
love,” said Mimi, “and that’s what we gave them.”
Mimi can describe
dozens of children in loving detail—the criers, the sweet ones, the hyperactive
kids, the clowns and the quiet ones. “We were like their mothers. Some of the
child-care workers even adopted children from ICC,” she said. “I wanted
to, but I was living at home, and my mother and father didn’t want to take care
of another little baby at the time.”
Besides feeding,
changing and bathing duties, the child-care workers were also responsible for
administering drugs to the infants.
“The nurses would lay
out the drugs on the counter. Lots of pills, powders and oral syringes, all
labeled for each particular child. We’d pick up the syringe and put it right
into the mouth or into the tube if they had one.
“We didn’t like it,
but that was our job,” said Mimi. “We were told that they would die without the
drugs—and since we were with the kids the most, it was up to us.”
“But over time,” Mimi
said, “we began to feel betrayed.”
“In the beginning we
were taking care of little abandoned crack babies who had no one, but then it
changed. More and more of the kids were there for compliance. They didn’t want
to take drugs, or their parents didn’t want to give them, so they got put in ICC.
“None of us ever
blamed the kids for refusing. We all saw them throw up like clockwork after
taking the pills, and then the diarrhea that followed.
When the kids were all
younger—babies—they couldn’t tell us the drugs made them sick. But when they
got older they started to tell us, ‘I don’t want to take this ‘cause I can’t go
to school, I feel worse when I take it.’”
“We all had doubts
about what we were doing,” Mimi said. “But honestly, we did what we were told.”
One of the things Mimi
and the other childcare workers noticed was the constantly shifting medicine
regime. “Some children got AZT, some didn’t. Then it would switch. Then it
was a new drug, then it was a drug that we never heard of.
“We figured it out,”
she said. “These were experimental treatments.” Marta, another child-care
worker, put it more bluntly, “This is the guinea-pig business,” she said.
ICC is
administered by Columbia Presbyterian Hospital and the Catholic Home Bureau. It was
under ICC’s first medical director, Dr. Stephen Nicholas, that the orphanage
began to receive funds from the National Institutes of Health to use its wards
in pharmaceutical clinical trials.
ICC claims to
have stopped the trials in 2002, but children from ICC are still seen
at major New York hospitals, including Columbia Presbyterian, which all
continue to do trials with HIV-positive children.
In 2005, following a
year of media coverage on ICC, the New York City Council held a City Hall
meeting to determine what exactly had happened there. Mimi attended.
“What a joke,” she
said. “They were trying to find out if ICC was doing trials… We were
giving kids experimental drugs since the beginning. It was no secret. If you
asked the nurses about it, you were told it was normal, and not to ask
questions. If you asked the doctors why some kids got AZT and some
didn’t, you didn’t get an answer.”
“But we knew drug
trials were going on,” said Mimi. “The child-care workers, the nurses, the
doctors, administration—everybody knew.”
I asked how the children
handled the complex regimen.
“The nurses said these
children were lucky because they were getting the new drugs, but at the same
time, when the kids vomited, or had diarrhea, or a bad rash,” Mimi said, “we
knew it was the meds. Even the nurses told us it was the meds. You couldn’t
hide it. It happened too regularly, it was predictable.
“Give the drugs, get
ready for the vomiting and the shit.”
“But we had to give
them. We were always told that without the meds they would die,” said Mimi.
“Is that what
happened?” I asked.
“No,” said Mimi. “It
wasn’t that predictable. Some kids lived and some kids died. But the ones who
were drugged the most did worse.” She added, “The ones with the tubes always
did worse.”
When Mimi started
at ICC, the tubes were used infrequently. “But when the kids got older, a
lot of them started to refuse the medication,” she recalled. “Then they started
coming in with the tubes more and more.”
“Kids who refused too
much, or threw up too much, they’d get a tube. First it was through the nose.
“But then it was more
and more through the stomach. You’d see a certain child refusing over and over,
and one day they’d come back from the hospital from surgery, and they had a
tube coming right out of their stomach.D
“If you asked why, the
doctors said it was for ‘compliance‘—the regimen. Got to keep up the regimen,”
said Mimi. “Those were the rules.”
“We weren’t happy
about it, because it wasn’t just the drugs—it was everything that was getting
pumped through the tube. Children would be pumped all night long with the
milk—the PediaSure. It would pump so hard that the milk would leak out around
the hole.
“Sometimes we’d turn
off the pump for the kids, because it hurt their stomachs, but then the nurses
would turn it back on. Some of the kids would do it themselves—they’d get out
of bed in the middle of the night and turn off the machine. But in 20 minutes,
it would start beeping, and the nurse would go back and turn it on.”
“The children who were
pumped all the time wouldn’t have any appetite left, so they wouldn’t eat. And
then with the drugs on top of that, with the diarrhea, they wouldn’t do well.”
“But that was the
rule,” said Mimi. “Keeping to the regimen. Adherence. Give the drugs on time,
on schedule, no matter what,” Mimi repeated. “Or you’re fired.”
“Adherence” was the
word of the day in late 2003, when I interviewed Dr. Catherine Painter,
ICC’s current medical director, about the relentless drug schedule. Painter
explained, “What we’re asking of our families and patients in terms of
adherence is something beyond 100 percent—all of their medicines all the time,
whether they have them on-hand or not, whether the medication makes them sick
or not, or whether they’re sick with a concurrent illness.”
Michelle, a
17-year-old former resident at ICC, was there for just this reason. “I’ve
expressed that I don’t want to take the drugs, but they don’t listen.”
Michelle said that the
drugs are given continuously throughout the day and night.
“I don’t have to be up
until 8:30, but they’d wake me up at 6 a.m. and give me meds. So I’d take the
meds and go back to sleep. Then I’d wake up—and throw up. Because it was
sitting in my chest and not in my stomach—and either way it doesn’t feel good.”
I asked Mimi why the children
were drugged at night.
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“The doctors and
nurses gave us the drug schedule, and we had to follow it. Nine p.m., 12 a.m.,
3 a.m., 5 a.m.—it didn’t matter. We had cups full of pills and powders and oral
syringes. It was up to us to figure out how to do it.”
“So we learned to wake
the children up, halfway, and pop it or squirt in their mouths and get them to
swallow with a glass of water, and they’d fall back to sleep.”
“How did the children
react?” I asked.
“About half the time
or more they’d wake up puking. We felt bad for them,” said Mimi.
“At the time I thought
it was better to get them to take the medication when they were half asleep and
couldn’t refuse, than to see them get a tube put in because they were
refusing.”
“But we all had our
doubts,” she added.
“One girl, a
six-year-old, Shyanne—she came in for adherence. She was the most delicate
little flower—beautiful, polite, full of life. Her family never gave her meds.
So Administration for Children’s Services brought her into ICC.”
“So, she came in, and
started the meds. And it was three months, maybe three months. And she had a
stroke. She couldn’t see. She was this normal girl, singing, jumping, playing.
Then, poof, stroked out. Blind. We were freaked out. Then, in a few months, she
was gone—dead.”
Michelle, the
17-year-old, knew Shyanne. So did Deanna, a 16-year-old who was Shyanne’s
roommate.
“That poor girl is
traumatized,” said Mimi. “Can you imagine, you go to sleep and you wake up and
they’re taking away your roommate?”
The drug Mimi
remembers giving most often at ICC is the nucleoside analog AZT.
In addition to the drug’s long list of severe and even life-threatening
toxicities, AZT also been linked to lymphoma and other cancers.
Andre, a 19-year-old
who spent years at ICC as a child and adolescent, told me that he
never wanted to take the pills because he didn’t like them. So he’d hold them
in his mouth and spit them out later.
“What about when
they’d drug you at night,” I asked.
“Oh yeah,” he said,
remembering—his eyes widening slightly. “I remember that. I guess I did take
them.”
Last year, Andre was
treated for lymphoma. He wonders if it was related to the AZT he was
regularly fed as a young boy.
Mimi has encouraged
him to get his complete medical records from the state, but he is having little
luck getting through the system.
Andre’s memories
of ICC are mixed. He tells me that he loved the child-care workers,
like Mimi, who looked after him. He just didn’t like the drugs, so he didn’t
take them, when he had a choice.
Shawn, a 14-year-old
boy who is still in state custody, has practically grown up at ICC. When I
asked him what he thinks about ICC, he said, “I like ICC because
my friends are there.” He paused then added in a quiet voice, “But I don’t like
when people run away from shots or vaccinations, or have to get held down so
they can give you a shot.”
Shawn is also in ICC because
he doesn’t like to take the drugs, and Mona, his aunt and legal guardian,
doesn’t like to give him drugs that she claims make him weak and sick.
Shawn acts out—he runs
away whenever he can to get away from the constant, monitored drugging. When he
is returned to ICC, Shawn tells me, it’s “needle time“—time for Thorazine
shots, then off to a local psych ward.
“They’re destroying
him,” his aunt Mona tells me. “He just wants to come home, it’s so obvious.
That’s why he runs away.”
“The regime has changed,”
said Mimi, “and so has the place. It’s AIDS drugs plus—plus psych
meds, anti-psychotics, antidepressants. We came to work here with kids we were
told were dying—crack babies—to try to care for them. Today it’s a psych ward.”
In 1999, Mimi
left ICC for nearly two years to have a baby. When she came back, ICC was under
new management. The nuns who used to administer ICC had been replaced
by a nursing-home bureaucracy, headed by Executive Director Carolyn Castro.
ICC’s founding
physician, Dr. Steven Nicholas, moved on to head Harlem Hospital’s Pediatric
division in 2001. Nicholas is also project leader and principal investigator
for two ongoing HIV/AIDS projects in La Romana, Dominican Republic.
Like ICC, these projects are funded and overseen by Columbia University in
conjunction with the local church and state authorities.
Another important
change at ICC was that the child-care workers now belonged to a
union, and were no longer responsible for administering drugs.
“That was a relief,”
Mimi said. “After I became a mother, I didn’t think the same way about things,
about the drugs.”
Rhonda, a former nurse
from ICC, relates the story of how Marylin Santiago, one of ICC’s
supervising nurses, suffered a needle-prick injury, and went on AZT,
according to the current recommendation for healthcare workers.
“She was not well at
all,” said Rhonda, “Malaise, diarrhea, she was tired out, like she was going to
die.”
Mimi added, “She had
it bad. She got a dose of her own medicine.”
Rhonda pointed out
that when Santiago got off the AZT, her system returned to normal.
AZT, the drug that is
used in case of needle-stick injuries, is the same drug given to pregnant women
and young children who test HIV positive worldwide. It was also used
the ICC trials. AZT is often referred to in the mainstream
press as a “life-saving” drug, despite the fact that it warns of the
possibility of fatal anemia and organ failure on its label. A 1999 study in the
journal AIDS reported that children born to mothers who are
given AZT are sicker and die faster than those not given the drug. It
is one of several recent studies reporting that AZT increases the
rate of illness, major malformation and death in children whose mothers are fed
the drug.
Mimi left ICC in
December 2004. “I was fired,” she said. “I let it happen. I couldn’t stand it
anymore—I watched them drugging this little boy to death—there’s no way it was
anything but the drugs.”
Mimi described a boy
named Seon, who died in spring of 2004.
“He had all these
soft, fatty lumps. We even called him “lumpy.” She said. They sent him to get
the lumps on his neck removed in surgery, and they would just grow back. They
told us it was cancer, but he was on all those drugs. He had a tube, and they
were always pumping him. When we changed his diapers, it would come out like
the drug mixture—rough and sandy like the ground-up pills.”
Mimi said that after
he died, she read about the phenomenon of “buffalo humps,” large fatty lumps on
the back and neck that result from the newer AIDS drugs called
protease inhibitors.
Rhonda, the
former ICC nurse, and Mimi both remember another boy at ICC who
developed a breast while on the drugs. “He had a mastectomy, and then the other
one started to grow. They couldn’t hide that it was because of the drugs, but
with Seon, they told us it was cancer,” said Mimi.
Mimi has a paper
from ICC, that she saved from Seon’s treatment. “One day I got a sheet
from the nurses about a drug they were going to give Seon—it said any woman who
was pregnant or who was of child-bearing age should not touch the drug, even
with gloves on.”
“I couldn’t pronounce
the name, so I kept the sheet. Thalidomide. That’s what they gave him.”
Thalidomide was
originally marketed as a safe, over-the-counter sedative and analgesic in the
1950s and 1960s throughout Europe. It caused a wave of severe deformities in
children of pregnant women who took the drug and was taken off the market. In
1998, the drug company Celgene resurrected Thalidomide, with FDA approval,
officially as a leprosy drug, but with intended off-label use for AIDS and
cancer patients.
“They pumped Seon with
it; he deteriorated fast,” Mimi said. “Once day we came in and he was bleeding
from every hole in his body—his rectum, his nose, his mouth. He was in such
pain. He would scream when he had to go to the bathroom. They put him on a
respirator. They induced a coma with drugs so they could put him on a
respirator. They told us they did it so he could breathe better.” Mimi said,
her voice getting a little rough. “I sat with him; he couldn’t talk, but he was
crying-tearing from his eyes. “He got all dry and scaly; he shriveled up like a
snail-and he died.”
“After he died, I just
didn’t care anymore. I didn’t want to be there. I didn’t want to quit, because
I’m close with the kids—it was confusing,” Said Mimi. “I’d been there for
almost 10 years. But I couldn’t stand it after that. So I stopped listening,
and argued, and was insubordinate. They said I fell asleep in one of the
rocking chairs for five minutes during an overnight shift. I said I didn’t.
They asked me to come in and talk about it, but I said fuck it. It didn’t even
matter. So they fired me. It was a relief.”
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After Mimi left, she
was contacted by a half-dozen former ICC residents—children she’d
helped to raise and take care of.
“We talk,” said Mimi.
“We talk about what’s happened, and how they can live their lives now.”
Michelle, the
17-year-old, is one of Mimi’s
post-ICC kids, who spent six months at ICC in 2004. She is now
out of ICC and back in high school. Michelle admits that whenever she
can, she weans herself off the drugs.
“When I was on the
medication, it was hard. It doesn’t make me feel good, and I have to deal with
feeling sick and then trying to make it through my eight-hour day.”
What happens when you
quit?
“The withdrawl period
is hard,” she said. “I’m tired and I want to sleep all the time.”
Michelle has been off
the drugs for a few months, and says she feels better and stronger. “It’s
easier, I don’t feel like I used to—12 o’clock comes and I feel hungry, but I
don’t get sick if I don’t eat right away.”
Michelle is out
of ICC, but she’s not free of New York’s Drug Adherence program. She is
required to attend weekly doctor appointments where her blood is drawn and
tested for med levels.
What happens if the
doctors decide you’re not taking the drugs?
“They put you back in
the hospital or in ICC—like that,” she said, snapping her fingers. “They always
say it’s just going to be a short period of time, but it’s always a few
months—and that’s out of my school time.”
Michelle explained,
“School is everything to me—I just want it out of my way so I can keep moving
through life. I want to go to college—and high school is standing in my way”
“So it’s comply versus
school. Don’t comply, and miss out on school. Then it’s an extra year you have
to do. So, smile and nod and take the pills, and slowly stop, or it’s back to
square one.
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“I’m 17, not 18, and
until I’m 18—I can say the sky is blue—and they’ll say it’s not—and I say ‘Yes
it is‘—but it doesn’t make a difference. Three more months,” she said, her
throat tightening.
“I’m telling you, I
can’t wait…I can’t wait.”
Fauci’s NIH funded experiments on AIDS orphans in New York City
Dr.
Anthony Fauci’s National Institutes of Health (NIH) approved drug trial
experiments on hundreds of AIDS orphans in New York City. Over 200 of the
orphans died during or after the experiments, according to Liam Scheff, the
investigative reporter who broke the story.
The
Incarnation Children’s Center (ICC) “began testing drugs on its orphan
population in 1992, the same year they became a subsidiary of Columbia
University’s Pediatric AIDS Clinical Trial Unit, under Dr. Anne Gershon,”
Scheff noted. “In 2003, I went undercover inside the facility and saw the
effects of the drugs on the children myself.” ‘These children were, because of
their HIV status, written off as a loss by the medical authority, before they
even got a chance to live.’
Scheff
broke the story in an article entitled The House that AIDS Built that first ran
on Indymedia.org.
Scheff
said his investigation found
that the NIH and Columbia Presbyterian Hospital acted unethically.
The
Associated Press reported in June 2005: “The government has concluded at least
some AIDS drug experiments involving foster children violated federal rules
designed to ensure vulnerable youths were protected from the risks of medical
research.”
Fauci was
the NIH AIDS Coordinator before being appointed as the first Director of the
Office of AIDS research when the office was established in 1988. He served in
that capacity until 1994. Fauci became director of the National Institute of
Allergy and Infectious Diseases (NIAID) in 1984 and still holds that position.
Scheff reported several deaths in children at
the ICC during the drug trials, adding that “although the mainstream denied
that any deaths were due to drug toxicity, they admit that over 200 children
died.”
In 2005,
the City of New York hired the VERA Institute to produce a final report on the
drug trials. VERA was given no access to medical records for any of the
children used in trials. Their report was published in 2008.
VERA
reported that 25 children died during the drug studies, that an additional 55
children died following the studies (in foster care), and, according to Tim
Ross, Director of the Child Welfare program at VERA (as of 2009), 29 percent of
the remaining 417 children who were used in drug studies had died (out of a
total 532 children that are admitted to have been used).
No
payment or compensation was ever paid to any of the children used in the
trials, or to their families, Scheff noted.
Many of
the drugs (like AZT and its analogues) that were used in the experiments on the
AIDS orphans in New York City had previously been approved for use in adults
and “evidenced life-threatening and fatal toxicities,” Scheff reported. “So why
put a drug with severe recorded toxicities into a population of black and
Hispanic orphans?”
Scheff
noted: “Incarnation’s orphans live at the bottom of the American class system.
Often the children of drug users, they were born into ill health and poverty.
Additionally (and like all AIDS patients), these children were, because of
their HIV status, written off as a loss by the medical authority, before they
even got a chance to live.”
Why
wasn’t Fauci’s NIH interested in competitive AIDS research?
“That’s
the billion-dollar question,” Scheff noted. “That is, if inexpensive
micronutrients and competitive disease and treatment models prove more
successful than the current research, it will represent a loss of billions for
the AIDS drug and research industry.”
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