- HIV positive children and their loved ones have few rights
if they choose to battle with social work authorities in New York City.
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- Jacklyn Hoerger's job was to treat children with HIV
at a New York children's home.
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- But nobody had told her that the drugs she was administering
were experimental and highly toxic.
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- "We were told that if they were vomiting, if they
lost their ability to walk, if they were having diarrhoea, if they were
dying, then all of this was because of their HIV infection."
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- In fact it was the drugs that were making the children
ill and the children had been enrolled on the secret trials without their
relatives' or guardians' knowledge.
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- As Jacklyn would later discover, those who tried to take
the children off the drugs risked losing them into care.
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- The BBC asked the Alliance for Human Research Protection
about their view on the drug trials.
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- Spokesperson Vera Sherav said: "They tested these
highly experimental drugs. Why didn't they provide the children with the
current best treatment? That's the question we have.
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- "Why did they expose them to risk and pain, when
they were helpless?
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- "Would they have done those experiments with their
own children? I doubt it."
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- Power and authority
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- When I first heard the story of the "guinea pig
kids", I instinctively refused to believe that it could be happening
in any civilised country, particularly the United States, where the propensity
for legal action normally ensures a high level of protection.
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- But that, as I was to discover, was central to the choice
of location and subjects, because to be free in New York City, you need
money.
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- Over 23,000 of the city's children are either in foster
care or independent homes run mostly by religious organisations on behalf
of the local authorities and almost 99% are black or hispanic.
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- Some of these kids come from "crack" mothers
and have been infected with the HIV virus. For over a decade, this became
the target group for experimentation involving cocktails of toxic drugs.
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- Central to this story is the city's child welfare department,
the Administration for Children's Services (ACS).
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- The ACS, as it is known, was granted far-reaching powers
in the 1990s by then-Republican Mayor Rudi Giuliani, after a particularly
horrific child killing.
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- Within the shortest of periods, literally thousands of
children were being rounded up and placed in foster care.
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- "They're essentially out of control," said
family lawyer David Lansner. "I've had many ACS case workers tell
me: 'We're ACS, we can do whatever we want' and they usually get away with
it."
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- Having taken children into care, the ACS was now, effectively,
their parent and could do just about anything it wished with them.
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- 'Serious side-effects'
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- One of the homes to which HIV positive children were
taken was the Incarnation Children's Center, a large, expensively refurbished
red-bricked building set back from the sidewalk in a busy Harlem street.
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- It is owned by the Catholic church and when we attempted
to talk to officials at Incarnation we were referred to an equally expensive
Manhattan public relations company, which then refused to comment on activities
within the home.
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- Hardly surprising, when we already knew that highly controversial
and secretive drug experiments had been conducted on orphans and foster
children as young as three months old.
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- We asked Dr David Rasnick, visiting scholar at the University
of Berkeley, for his opinion on some of the experiments.
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- He said: "We're talking about serious, serious side-effects.
These children are going to be absolutely miserable. They're going to have
cramps, diarrhoea and their joints are going to swell up. They're going
to roll around the ground and you can't touch them."
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- He went on to describe some of the drugs - supplied by
major drug manufacturers including Glaxo SmithKline - as "lethal".
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- When approached by the BBC, Glaxo SmithKline said such
trials must have stringent standards and be conducted strictly in accordance
with local regulations.
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- Battle of wills
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- At Incarnation, if a child refused to take the medicines
offered, he or she was force-fed through a peg-tube inserted into the stomach.
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- Critics of the trials say children should have been volunteered
to test drugs by their parents.
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- When Jacklyn Hoerger later fostered two children from
the home where she used to work with a view to adopting them, she discovered
just how powerful the ACS was.
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- "It was a Saturday morning and they had come a few
times unannounced," she said. "So when I opened the door I invited
them in and they said that this wasn't a happy visit. At that point they
told me that they were taking the children away. I was in shock."
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- Jacklyn, a trained paediatric nurse, had taken the fatal
step of taking the children off the drugs, which had resulted in an immediate
boost to their health and happiness.
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- As a result she was branded a child abuser in court.
She has not been allowed to see the children since.
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- In the film Guinea Pig Kids, we follow Jacklyn's story
and that of other parents or guardians who fear for the lives of their
loved ones.
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- We talk to a child who spent years on drugs programmes
which made them and their friends ill, and we discover that Incarnation
is not an isolated case. The experiments continue to be carried out on
the poor children of New York City.
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- - Guinea Pig Kids will be broadcast on Tuesday, 30 November,
2004, at 1930 GMT on BBC Two (UK).
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- © BBC MMIV
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- http://news.bbc.co.uk/2/hi/programmes/this_world/4038375.stm
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