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New York's HIV experiment
By Jamie Doran
Reporter/producer, Guinea Pig Kids

HIV positive children and their loved ones have few rights if they choose to battle with social work authorities in New York City.


Jacklyn Hoerger worked at the Incarnation Children's Center

Jacklyn Hoerger's job was to treat children with HIV at a New York children's home.

But nobody had told her that the drugs she was administering were experimental and highly toxic.

"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."

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.

As Jacklyn would later discover, those who tried to take the children off the drugs risked losing them into care.

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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.

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.

I've had many ACS case workers tell me: 'We're ACS, we can do whatever we want'

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.

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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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.

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.

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.

We asked Dr David Rasnick, visiting scholar at the University of Berkeley, for his opinion on some of the experiments.

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."

He went on to describe some of the drugs - supplied by major drug manufacturers including Glaxo SmithKline - as "lethal".

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LONDON (Agence de Presse Medicale) - GlaxoSmithKline on Tuesday defended trials of HIV (news - web sites) drugs in orphans, saying "clinical trials involving children and orphans were legal and not unusual."

A BBC television documentary, "Guinea Pig Kids," being shown later today, revives criticism of company-sponsored studies at the Incarnation Children's Center, a New York care home that specializes in treating HIV.

A report in the Observer newspaper in April first highlighted the "scandal" of deprived HIV-positive children, including blacks and Hispanics, being enrolled in drug trials.

It said the city's health department had launched an investigation into claims that more than 100 children at Incarnation were used in 36 trials -- at least four co-sponsored by Glaxo.

Michael Weinstein, President of the AIDS (news - web sites) Healthcare Foundation, a U.S. group often critical of GSK, said in a statement today that the company was "being accused of exploiting one of our most vulnerable populations."

He quoted media reports saying that in some cases children were removed from foster homes when foster parents refused to give children the drugs.

Glaxo said regulatory agencies encouraged companies to conduct pediatric trials so that drugs can be appropriately prescribed to children. "Clinical trials involving children and orphans are therefore legal and not unusual."

The company said it had provided drugs for four trials conducted by the Pediatric AIDS Clinical Trials Group (PACTG) and funds and drugs for a fifth pediatric trial involving Columbia Medical Center.

"The PACTG designs and implements the studies. Companies like GSK will choose to provide medicine, funding, or not participate, based on a review of the trial design; but ultimate approval, control and execution of the study are the responsibility of the PACTG.

"This is appropriate, as long as such trials are conducted under the most stringent standards, and in compliance with the various state and federal laws and regulations regarding legal authority in the case of minors," the company added in a statement.

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