ORPHANS ON TRIAL
Abandoned kids are force-fed experimental AIDS drugs at a Catholic
children's home in Washington Heights.
And the city wants it that way.
By Liam Scheff
*
When Christine Maggiore tested HIV-positive in 1992, her doctor told her
to get ready to die. But she wasn't interested in dying.
Maggiore was told that the AIDS drugs would make her sick, so she skipped
them, instead relying on natural methods to support her health. A year and
a half later, she was so healthy that her doctor said there was something
wrong and she should retest.
She did retest, several times. The tests came back negative, indeterminate
and positive. Maggiore investigated the medical literature and found what
was recounted above: HIV tests are highly inaccurate. She also discovered
that there are gaping flaws in the HIV hypothesis itself.
Believing that this is the sort of thing people should know, she founded
Alive & Well AIDS Alternatives, a resource for people who, like herself,
want to make fully informed decisions about their health.
Since testing positive, Maggiore has had two children. Her kids, two and
six years old, have never been tested. They've been raised on organic
food, with a naturopathic approach to health. They're both intelligent and
active. They don't take AIDS drugs. And they're not in the least bit sick.
They regularly see their pediatrician, who has no medical complaints about
their well-being.
And they're not alone. There are thousands of healthy HIV-positive people
who don't take the drugs, who rely on natural regimens to support their
immune function.
It was through Maggiore that I met Mona, whose children, Sean and Dana,
have tested HIV-positive. By the state's definition, they're not actually
her children; Mona is their great aunt and legal guardian. Her niece, a
long-time drug user, was unable to act as a responsible mother, so Sean
and Dana were remanded to state foster care. Mona took them back to raise
as her own.
When I first spoke with Mona, she was stressed and nervous. Sean had twice
been sent to the Incarnation Children's Center (ICC), a "home for HIV
positive children" located in Washington Heights. First, as an infant,
then again four years ago. And Dana was there until June.
"Why did they take her?" I asked.
"They said I was a negligent parent because I didn't want to give the
drugs."
She'd been taking Sean and Dana to a naturopath. That the children were
healthy didn't matter. When city agencies found out that the children
weren't on the drugs, they took them away for mandatory treatment at a
clinic and then transferred them to ICC. There, they were locked up and
pumped full of drugs day and night.
"What drugs?"
"AZT, Nevirapine, Epivir, Zerit. All kinds of drugs."
To read through the list of drug studies either currently underway or
recently concluded at ICC - studies sponsored by government agencies -
NIAID, NICHD; and huge pharmaceutical companies - Glaxo, Pfizer, Squibb,
Genentech and Biocene... etc. is to take a trip through the nightmare
world of pediatric drug research.
For example, the study called "The Effect of Anti-HIV Treatment on Body
Characteristics of HIV-Infected Children" is looking for the causes of
"Wasting and Lipodystrophy [fat redistribution]" by using drugs known to
cause wasting and lipodystrophy.
Or consider "The Safety and Effectiveness of Treating Advanced AIDS
Patients between the Ages of 4 and 22 with Seven Drugs, Some at Higher
than Usual Doses." The seven drugs in the study are all known to cause
debilitating, potentially fatal side effects, yet they are administered at
"higher than usual doses" in four-year-olds.
Then there's a study with "Stavudine Alone or in Combination with
Didanosine." Stavudine plus Didanosine has killed pregnant women.
Or the vaccine study to be administered to children "12 months to 8 years"
using "live chicken pox virus," even though one of the consequences of a
live virus vaccine can be the disease itself.
Another measures "HIV Levels in Cerebrospinal Fluid." Cerebrospinal fluid
can only be gathered from a spinal tap, a dangerous and invasive
procedure.
There's even a study on HIV-negative children born to HIV-infected mothers
that uses an experimental HIV vaccine.
Mona was never informed that Sean had once participated in clinical trials
at ICC.
"But they're always changing the children's medications," she said.
I asked Mona how the children at ICC tolerate so many medications. She a
lot of them don't. "The ones that can't are drugged through a tube," she
said.
"There's a tube down their throat?" I asked.
"No" she answered, matter-of-factly, "they take them in for surgery."
"A surgeon puts a hole in them? Where?"
"In their stomachs," she said. "If a child refuses drugs too many times,
they take them away for the operation. I've seen it happen to children who
refuse the medication."
Incarnation Childrens Center is a foster home administered by the Catholic
Home Bureau under the Archdiocese of New York. According to the ICC
website, it was established in 1987 "to deal with the boarder baby
crisis." Boarder babies are children abandoned at the hospital.
In 1992, "an outpatient clinic for HIV-positive children was established"
and, with funding from the National Institute of Allergy and Infectious
Diseases (NIAID), which is a subdivision of the National Institutes for
Health (NIH), "the clinic became a subunit of the Columbia University
Pediatric AIDS Clinical Trials Unit."
That's when ICC went from being a home for children of impoverished,
drug-addicted mothers to a recipient of funds for allowing the NIH to use
these HIV-positive orphans as test subjects.
The ICC webpage listed dozens of trials with AZT and Nevirapine conducted
through the late 90s. The NIH site recently listed "five studies currently
recruiting for drug trials," and "27 studies ongoing or recently
completed" - all on children at ICC - as well as more than 200 at Columbia
Presbyterian, ICC's parent hospital. The studies are sponsored by NIH
subdivisions; many are cosponsored by the pharmaceutical companies that
manufacture the drugs being tested. The studies use the standard AIDS
drugs: nucleoside analogues, protease inhibitors and Nevirapine.
Nucleoside analogues, like AZT, work by stopping cell division. They stop
the formation of new blood in the bone marrow, in some cases causing
anemia and bone marrow death. They've caused death in pregnant mothers,
spontaneous abortion, birth defects, liver failure, pancreatic failure,
muscle wasting, developmental damage and death in children and adults.
They also may cause cancer.
Protease inhibitors interfere with the body's ability to build new
proteins. Since we're made of protein, protease inhibitors have pronounced
effects on physical appearance and organ function. The side effects can be
bizarre, grotesque and often fatal: wasting in the face, arms and legs,
fatty humps on the back and shoulders, distended belly, heart disease,
birth defects, organ failure - and death.
Almost all of this is found on the warning labels.
The first AIDS drug, AZT, was designed in the 60s as a chemotherapy drug
for cancer patients, but it was never approved. Critics declared it too
toxic even for short-term use, yet in 1987 it was pushed through for
lifelong use in HIV-positive people. Although its trials were later
revealed to be fraudulent, AZT remains on the market.
Finally, there's Nevirapine, which also interferes with normal cell
function. In test trials, Nevirapine has caused severe liver damage and
death in dozens of patients. Most die from organ failure due to drug
toxicity. Nevirapine can also cause a violent skin disorder called
Steven-Johnsons Syndrome?a horrifying condition in which the skin blisters
and ruptures or peels off in large swaths, leaving bloody, exposed flesh.
Nevirapine baby
Clinical examples of SJS and TEN cases related to Nevirapine.(Top right to
bottom left). (a) Erosions of lips and mouth are characteristics of SJS
and TEN. (b) Magnification of cutaneous lesions showing purpuric macules,
small blisters and positive Nikolski, i.e. detachment of epidermis on
pressure. (c) Skin biopsy showing the detachment of necrotic epidermis.
(d) SJS with discrete non-confluent small blisters, involving , <10% of
the body surface area. (e) Coexistence of small blisters and detachment of
the epidermis on 35-40% of the body surface area in TEN. (f) Detachment of
the epidermis is frequent on palms and soles.
2 related scientific papers on Nevirapine toxicity (PDF):
1) Nevirapine and the risk of Stevens-Johnson syndrome ortoxic epidermal
necrolysis
2) Nevirapine-associated Stevens-Johnson syndrome
Despite causing so many serious medical issues in the course of treatment,
AIDS drugs don't even claim to work. Every AIDS drug label bears a version
of this caveat:
"This drug will not cure your HIV infection. Patients receiving
antiretroviral therapy may continue to experience opportunistic infections
and other complications of HIV disease. Patients should be advised that
the long-term effects are unknown at this time."
So why do people take the drugs? Because they test HIV-positive. But as
Christine Maggiore learned, HIV tests are highly inaccurate.
Most HIV tests are antibody tests, which means that they can cross-react
with normal proteins in human blood. There are nearly 70 commonly
occurring conditions - as listed in the medical literature - that are
known to make the tests come up positive. These include yeast infections,
colds, flus, arthritis, hepatitis, herpes, recent inoculations, drug use
and pregnancy.
The remaining HIV tests, called viral load tests, can produce dozens of
conflicting results, even from the same blood sample.
HIV tests are so unreliable that they all bear a disclaimer: "At present
there is no recognized standard for establishing the presence or absence
of HIV-1 antibody in human blood," or "The AMPLICOR HIV-1 MONITOR [Viral
Load] test is not intended to be used as a screening test for HIV or as a
diagnostic test to confirm the presence of HIV infection," or "Do not use
this kit as the sole basis of diagnosis of HIV-1 infection" (Abbott
Laboratories HIV Test, Roche Viral Load Test and Epitope, Inc. Western
Blot Test, respectively).
And the kicker: Positive test results can occur due to "prior pregnancy,
blood transfusions...and other potential nonspecific reactions"
(Vironostika HIV Test, 2003).
In short: In the 90s, drug companies like Glaxo Wellcome and Abbott Labs
began recycling old chemotherapy drugs for the new AIDS drug market. This
market consisted of gay men who weren't told that the HIV test was a
nonspecific antibody test. They were told, however, that AIDS was an
unavoidable outgrowth of testing positive on this test, and that HIV was a
fatal condition.
If you look in the medical literature, you'll find that neither of these
assumptions is true. Mona's son Sean has lived in a virtual coma his
entire life. He was put on AZT in infancy. The drug made him so sick that
he couldn't swallow solid food and, as a result, he ate through a tube in
his nose until he was three. He had no energy. He was constantly ill. He
couldn't play or even walk without becoming exhausted. Sean got sicker
every time Mona gave him the drugs, so she cut down the doses. His energy
level began to improve. She continued to wean him off the drugs and
started taking him to a naturopath.
"For the first time in his life," she told me, "he became a normal boy. He
could play with the other children, he could walk, he could run. He smiled
and laughed. He was normal."
This would've been good news, except that Sean was born to a mother who
once tested HIV-positive. Sean, the recipient of his mother's antibodies,
also tested positive.
The Administration for Children's Services (ACS) came down hard on Mona
for not drugging him. She was sent to a new doctor, an AIDS specialist at
Beth Israel, who put Sean on a "miracle drug," Nevirapine. Within six
months, he was on life support due to organ failure.
That's when ACS decided that Sean should be put into ICC. They said he'd
be there for four months; he was there for more than a year. Mona had to
get a lawyer to get him out.
Mona showed me Sean's medical records. They told the same story: AZT,
Nevirapine, the ICU.
"Now they have Dana on the drugs."
Mona introduced me to Sean on a basketball court near their home. He was a
cute kid. His jacket was too big for him, and he walked with a little
shuffle - and a little wariness. He was small. I have a picture of myself
at four years old, oversized denim jacket, swinging my legs a bit as I
walked, and I was about the same size as Sean. Except Sean was 13. He
weighed 50 pounds and was about four feet tall. An AZT baby. Stunted, his
cells damaged from the inside out.
Incarnation Childrens Center is housed in a four-story brick building, a
converted convent with barred windows. At the entrance, there are glass
panes on either side of a large, solid door with a camera above it. The
day I went to ICC, there were children pushing up against the glass beside
the closed door looking at me. I walked through the door and into a
waiting room with a wide steel elevator door at the far end. I signed in
as a family friend of Mona's. The nurses eyed me suspiciously but didn't
stop me from entering.
Beyond the reception area was a large, dark room with stained-glass
windows on the far back wall. Children were grouped around folding
tables.
The kids ranged from a couple years old to almost adult. Except for a few
Hispanic kids, they were mostly African-American. A number of the children
were in wheelchairs. There was a boom box playing in the background.
Somebody had brought in pizza in cardboard boxes. A young woman in
sweatpants sat on one of the chairs. She looked at me and seemed
embarrassed; it was her 18th birthday party. A few bored, pale teenagers
sat around in the corners, watching with detached, vague expressions. They
were volunteers, coming to do community service for the AIDS children.
The wheelchair-bound kids were being fed or drugged, or both, with a
milky-white fluid dispensed through tubes coming out of hanging plastic
packs. The tubes disappeared beneath their shirts. Their eyes were vacant,
pained, focused at a point in the distance that I couldn't see.
I walked down a short hall into another room. There was a boy, maybe 10
years old, who had a bloated, water-logged appearance. He waved and
shouted, motioning for me to come play with him. A childcare worker said
his name sharply, like a warning, then looked at me sternly.
Back in the hallway, another little boy approached me and held out his
arms. I picked him up, and he squealed and squirmed playfully. As I tried
to get a better grip, my hand hit something hard - plastic. There was a
piece of plastic covering a hole in his abdomen. I went cold and put him
down carefully. Again, the nurses stared at me.
Getting ready to leave, I noticed a girl with a bloated stomach. She was
probably 12 or 13 years old. I looked down - there was a clear, hollow
plastic tube curling out of her sweatpants.
The thick, stale air was overwhelming, and it's then that I realized the
windows were not only barred, but shut.
"If they were open," Mona would later tell me, "the kids would try to get
out."
As I left, I again noticed the massive steel elevator door. According to
Mona, it led to the clinic.
"That's where they give them the drugs. Upstairs. They used to do it down
here, but they didn't like the other children seeing them give the
drugs."
Dr David Rasnick is a visiting researcher at UC Berkeley whom I worked
with on a series of articles examining the AIDS debate. When I told him
what I'd seen at ICC, he was disturbed - but not entirely surprised.
"AIDS doctors always assume their patients are going to die," he said.
"Nobody ever asks if an AIDS patient is actually sick from drug toxicity,
because they never considered that the person had a chance anyway."
Last September, I requested an interview with an ICC official. A nurse
told me that no one could come because "the children all have chicken
pox." I remembered the live chicken pox vaccine.
I showed up anyway. They wouldn't let me in, but they gave me a brochure.
It was filled with black and white pictures of patients, exactly like the
children I'd seen?drugged, damaged, with tubes hanging out of them.
In the middle of the brochure was a two-page photo of a drug tray filled
with syringes. The drug schedules read, "8 am, Valium, Lasix, Prednisone,
Bactrim, Epivir, Colace, Nystatin, Ceftriaxone."
There was a caption below the photo: "Medicine, medicine, medicine,
medicine. The medicines give you a clue of how complicated HIV disease in
childhood is. Ironically, years ago, one of my old professors told me that
any patient who's put on more than four drugs should find a new doctor."
In the back of the brochure, there was a photo of a man handling a small
white coffin, and another of a child's coffin in the front seat of a
hearse. In the back seat, an infant sat on a woman's lap. There was no
mention of drug toxicities. When these children die, they just call it
AIDS.
Rasnick had told me about a nurse, Jacqueline Hoerger, who'd worked at ICC
in the early 90s and had an experience similar to Mona's.
Hoerger had tried to adopt two little girls from ICC to raise and care for
with her husband. She administered the drugs "by the book" for about a
year, and watched as the girls got sicker. She started researching the
AIDS drugs. After much consultation with an open-minded M.D., she decided
to give the girls a permanent "drug holiday." To her relief and amazement,
the girls improved remarkably. She documented their improvement with her
doctor.
When it was revealed to the adoption agency that she wasn't drugging the
girls, New York Administration for Children's Services took them away and
returned them to foster care. It didn't matter that they were better. It
only mattered that they took the drugs.
In October 2003, I contacted ICC's executive director, Caroline Castro.
She told me to write out my questions and send them in an email, which I
did.
Where do the kids come from?
What's the current protocol for treating HIV-positive children?
I read on your website that you're participating in clinical trials. What
kind of trials? What kind of funding do you get for participating?
Castro replied: "ICC appreciates your interest in our services but
regretfully declines to participate in your project."
I called her anyway and asked her about the clinical trials. She said that
ICC wasn't participating in clinical trials. When I noted that the NIH
website lists ICC as a participant, she yelled at me.
"Why do you have to write about ICC?" she asked. "Don't write about us.
You should write about somebody else." Then she hung up.
I called ICC's medical director, Dr. Katherine Painter. I got lucky, she
agreed to speak with me. Evidently, she and Castro weren't sharing emails
that day. I interviewed Dr. Painter for about an hour. Painter responded
to my questions in extremely cautious, academic language.
When I mentioned the toxicity of AZT, she agreed that there had been some
problems. But, she assured me, the new drugs had solved them.
According to Painter, the "biggest problem facing families with
HIV-positive children is adherence." Adherence is a code word for people
who don't want to take the pills. It doesn't mean illness; it means
obedience to a drug regimen.
I asked her if ICC participated in clinical trials.
"Many of the clinics that refer to us are participating in clinical drug
trials. Children participating in a drug trial undergo monitoring, testing
and supply of an experimental drug through their outpatient clinic and we
maintain that treatment here."
Had Castro lied to me? Clearly, the Incarnation Children's Center was
participating in clinical trials. The kids may be enrolled at various area
hospitals, but they're housed and drugged at ICC - which sounds an awful
lot like participation.
I noted that the NIH clinical trial database listed hundreds of drug
studies using children.
"There are loads and loads of trials going on in children," she replied.
As for adherence among the young patients, Painter noted that the drugs
have a "significant, lingering, bitter taste." So they mix the pills or
powders in chocolate or strawberry syrup.
But "for some cases," she said, "it's better administered through a
g-tube." That's the stomach tube.
I asked her how they put in a g-tube. She said a surgeon cuts through the
child's abdomen, "through the abdominal wall musculature, and then through
the stomach. It creates a very small hole, about a quarter inch. It takes
several weeks to heal well, so it's a bit tender. A small tube is placed
through the stoma or opening. From the outside you can connect a syringe
or feeding tube."
I asked why ICC insisted on drugging children in this manner when there
are thousands of HIV-positive individuals who aren't sick, or who are
pursuing naturopathic regimens with great success.
Painter admitted that she knew about these people - she used the industry
term, LTNP (long-term non-progressors). This is a title used by AIDS
academics to dodge the fact that even the Center for Disease Control &
Prevention agrees that the majority of people with HIV aren't sick. Most
AIDS patients are given the diagnosis because of a T-cell count rather
than an actual illness.
The LTNPs I know are involved in health-supportive regimens, they avoid
immune-damaging practices, foods and substances - including the AIDS
drugs.
"In treating AIDS," I asked, "why aren't we looking at supporting the
immune system? Why are we giving people who are already sick drugs that
kill the lining of the intestines and cause liver failure? Look at the
adverse effects of any of these drugs?"
She interrupted. "Yes, of course, drugs have adverse reactions. But the
risk/benefit of any medication must be weighed." She was becoming
irritated. "May I remind you that untreated HIV infection is a terminal
diagnosis."
And there it was, exactly what Dr. Rasnick had said: "AIDS doctors always
assume that their patients are going to die."
But Painter had already agreed that wasn't true. There were the LTNPs. If
they weren't dying and they tested positive, then her statement was
incorrect.
She began to lecture me about the progression of the disease. First
positivity, then, 10 years later, sickness, then inevitably, death.
"Fine," I said, "let's say that someone who tests positive is indeed ill.
The kids in ICC, besides being drugged all the time, are children of
chronic drug abusers. Isn't that a good reason to be sick?"
"No," she said.
"But HIV tests cross-react with antibodies produced from drug abuse."
"No," she protested.
"Yes, they do," I said. "Drug abuse, hepatitis, there are about 70
recorded conditions that make the test come up positive."
In reporting on the AIDS debate, I'd never met an HIV researcher or doctor
who told me that HIV tests were even close to 100 percent accurate. Even
the lab technicians I've met accept that the tests can be inaccurate and
unreliable.
I ask again: "Why are we treating AIDS patients with drugs that kill their
immune systems? Shouldn't we be helping them build their immunity?
Shouldn't we be saying anything that works in the treatment of AIDS is
valid?"
Painter said that there was room for "supplementary therapy, including
nutritional support" but, she reiterated, "antiretroviral therapy has been
the leading intervention that has significantly reduced morbidity and
mortality in HIV infection."
I looked at my pile of papers: dozens of drug studies in which patients
have died, in the researcher's own estimation, specifically because of the
drugs. I looked at the warning labels: heart attack, organ failure,
wasting, bone loss, anemia, birth defects, skin loss, bloody rashes,
deformation and death.
Painter was in charge of at least 20 kids at a time, many of them orphans
taken from their homes for the purpose of having a drug regimen enforced.
She knew or was willing to admit less about HIV tests and HIV drug
toxicity than almost any medical professional I'd ever spoken with. I
thanked her for her time, and hung up.
Inside Incarnation Childrens Center, the children in wheelchairs stared
ahead, unable to focus. I wanted to take them all outside, into the fresh
air. It was a bright sunny day, and they were locked up in this room, a
girl's 18th birthday party under stained glass.
I approached one of the children in a wheelchair, a boy about 12. There
was something strange in his face - his head was oddly shaped. It was a
bit squashed, with the eyes spaced widely. His limbs and torso were
slightly warped, shortened and weak-looking. This is what happens to AZT
babies.
I looked at the other children. Same arms, same legs, same faces. One boy
on half-crutches tried to dance to the music. His legs dangled beneath
him, his feet at odd angles to the ground. I knelt by the boy in the
wheelchair. He made a slight sound, like a panic deep inside trying to get
out. I didn't want to alarm him, so I got up.
I met a boy named Amir who was sitting at one of the tables. He was about
six years old. Amir had a stomach tube. He had also undergone multiple
plastic surgeries to remove "buffalo humps" - that's what the AIDS doctors
call the large, fatty growths from the necks and backs of people who take
protease inhibitors.
I walked over to him, and he smiled broadly. His head was in that same
squashed shape, and his back and shoulders were oddly rounded. He grabbed
onto my shirt. I knelt down and he put his arms around my neck for a hug.
There were large round discolorations on his neck where the lumps had been
removed. After a couple minutes, I tried to get up, but he held on. I took
his hands gently in mine, held them for a moment, then carefully let go.
Five months later, Mona saw Amir in the hospital. "My stomach is swollen;
it got big," he told her. "They cut me, they cut me." He pointed to an
incision on his side.
"I think it's the tube," Mona told me. "I think it's infected."
When I asked Dr. Painter how they decide that the stomach tube should be
used, she told me, "When other interventions to help a child take the
medication by mouth have failed."
Something certainly failed with Amir. Two weeks after Mona saw him in the
hospital, he was dead.
