Jamie Doran
BBC NewsSun, 04 Nov 2007 01:50 UTC
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'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.
The BBC asked the Alliance for Human Research Protection about their view on the drug trials.
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.
"Why did they expose them to risk and pain, when they were helpless?
"Would they have done those experiments with their own children? I doubt it."
Power and authority
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.
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.
Central to this story is the city's child welfare department, the Administration for Children's Services (ACS).
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.
Within the shortest of periods, literally thousands of children were being rounded up and placed in foster care.
"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."
Having taken children into care, the ACS was now, effectively, their parent and could do just about anything it wished with them.
'Serious side-effects'
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".
When approached by the BBC, Glaxo SmithKline said such trials must have stringent standards and be conducted strictly in accordance with local regulations.
Battle of wills
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.
Critics of the trials say children should have been volunteered to test drugs by their parents.
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.
"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."
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.
As a result she was branded a child abuser in court. She has not been allowed to see the children since.
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.
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.
Comment: For further reading, we recommend
"Out of control: AIDS and the corruption of medical science" by Celia Farber, which has been published in the March 2006 issue of Harper's Magazine. Ms. Farber provides ample evidence that experimenting on unsuspecting people has become a standard in drug manufacturing:
**America is a place where people rarely say: Stop. Extreme and unnatural things happen all the time, and nobody seems to know how to hit the brakes. In this muscular, can-do era, we are particularly prone to the seductions of the pharmaceutical industry, which has successfully marketed its ever growing arsenal of drugs as the latest American right.
The buzzword is "access," which has the advantage of short-circuiting the question of whether the drugs actually work, and of utterly obviating the question of whether they are even remotely safe. This situation has had particularly tragic ramifications on the border between the class of Americans with good health insurance, who are essentially consumers of pharmaceutical goods, and those without insurance, some of whom get drugs "free" but with a significant caveat attached: They agree to be experimented on. These people, known in the industry as "recruits," are pulled in via doctors straight from clinics and even recruited on the Internet into the pharmaceutical industry and the government's web of clinical trials, thousands of which have popped up in recent years across the nation and around the world.
Such studies help maintain the industry's carefully cultivated image of benign concern, of charity and progress, while at the same time feeding the experimental factories from which new blockbuster drugs emerge. "I call them what they are:
human experiments," says Vera Hassner Sharav, of the Alliance for Human Research Protection in New York City. "What's happened over the last ten to fifteen years is that
profits in medicine shifted from patient care to clinical trials, which is a huge industry now. Everybody involved, except the subject, makes money on it, like a food chain. At the center of it is the NIH, which quietly, while people weren't looking, wound up becoming the partner of industry.
By June 2004, the National Institutes of Health had registered 10,906 clinical trials in ninety countries. The size of these trials, which range from the hundreds to more than 10,000 people for a single study,
creates a huge market for trial participants, who are motivated by different factors in different societies but generally by some combination of the promise of better health care, prenatal care, free "access" to drugs, and often - especially in the United States - cash payments. Participating doctors, whose patient-care profits have been dwindling in recent years because of insurance-company restrictions, beef up their incomes by recruiting patients." **
Additionally, many pharmaceutical companies take their clinical trials to developing countries because of lesser costs, more lenient laws and the availability of participants, for whom even the unproven drugs represent a major improvement over the standard of care they receive at local hospitals. That often turns deadly, as it was in a recent case of children in a Russian orphanage who died from an experimental measles vaccine. The manufacturer of the vaccines, a Belgian company, suffered no penalty.
Comment: For further reading, we recommend "Out of control: AIDS and the corruption of medical science" by Celia Farber, which has been published in the March 2006 issue of Harper's Magazine. Ms. Farber provides ample evidence that experimenting on unsuspecting people has become a standard in drug manufacturing:
**America is a place where people rarely say: Stop. Extreme and unnatural things happen all the time, and nobody seems to know how to hit the brakes. In this muscular, can-do era, we are particularly prone to the seductions of the pharmaceutical industry, which has successfully marketed its ever growing arsenal of drugs as the latest American right. The buzzword is "access," which has the advantage of short-circuiting the question of whether the drugs actually work, and of utterly obviating the question of whether they are even remotely safe. This situation has had particularly tragic ramifications on the border between the class of Americans with good health insurance, who are essentially consumers of pharmaceutical goods, and those without insurance, some of whom get drugs "free" but with a significant caveat attached: They agree to be experimented on. These people, known in the industry as "recruits," are pulled in via doctors straight from clinics and even recruited on the Internet into the pharmaceutical industry and the government's web of clinical trials, thousands of which have popped up in recent years across the nation and around the world. Such studies help maintain the industry's carefully cultivated image of benign concern, of charity and progress, while at the same time feeding the experimental factories from which new blockbuster drugs emerge. "I call them what they are: human experiments," says Vera Hassner Sharav, of the Alliance for Human Research Protection in New York City. "What's happened over the last ten to fifteen years is that profits in medicine shifted from patient care to clinical trials, which is a huge industry now. Everybody involved, except the subject, makes money on it, like a food chain. At the center of it is the NIH, which quietly, while people weren't looking, wound up becoming the partner of industry.
By June 2004, the National Institutes of Health had registered 10,906 clinical trials in ninety countries. The size of these trials, which range from the hundreds to more than 10,000 people for a single study, creates a huge market for trial participants, who are motivated by different factors in different societies but generally by some combination of the promise of better health care, prenatal care, free "access" to drugs, and often - especially in the United States - cash payments. Participating doctors, whose patient-care profits have been dwindling in recent years because of insurance-company restrictions, beef up their incomes by recruiting patients." **
Additionally, many pharmaceutical companies take their clinical trials to developing countries because of lesser costs, more lenient laws and the availability of participants, for whom even the unproven drugs represent a major improvement over the standard of care they receive at local hospitals. That often turns deadly, as it was in a recent case of children in a Russian orphanage who died from an experimental measles vaccine. The manufacturer of the vaccines, a Belgian company, suffered no penalty.