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.
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.
An interview with Jamie Doran on "Democracy Now," with Amy Goodman
Guinea Pig Kids: How New York City is Using Children to Test Experimental AIDS Drugs
Wednesday, December 22nd, 2004
A new BBC documentary exposes how the city of New York has been forcing HIV positive children under its supervision to be used as human guinea pigs in tests for experimental AIDS drug trials.
All of the children in the program were under the legal guidance of the city's child welfare department, the Administration for Children's Services. Most live in foster care or independent homes run on behalf of the local authorities and almost all the children are believed to be African-American or Latino.
The BBC identified pharmaceutical giant GlaxoSmithKline as one of the companies that provided the experimental drugs for the tests. In an email to Democracy Now! GlaxoSmithKline stated "pharmaceutical companies are not directly involved in the recruitment, enrolment or participation of patients in such trials." GSK went on to say "the FDA encourages studies in pediatric patients. Clinical trials involving children and orphans are therefore legal and not unusual."
In the documentary, parents or guardians who refused to consent to the trials claim that children were removed by ACS and placed in foster families or children's homes. Then, acting over their objections, ACS authorized the drug trials. We called the Administration for Children's Services to respond to the allegations but they declined to join us on the program but did send us a written statement.
To talk about this story we are joined by award-winning documentary filmmaker Jamie Doran who made the film "Guinea Pig Kids." He joins us on the line from London. And here in New York we are joined by Vera Sharav of the Alliance for Human Research Protection.
AMY GOODMAN: To talk about the story, we are joined by an award-winning documentary filmmaker, Jamie Doran, who made the film Guinea Pig Kids. He joins us on the phone from London. Here in New York we’re joined by Vera Sharav of the Alliance for Human Research Protection and we welcome you both to Democracy Now! Jamie Doran, let's begin with you. Tell us the story of your documentary, Guinea Pig Kids.
JAMIE DORAN: Basically, it began when someone told me about -- I was given a very rough version of the story, and I took it for granted that we were talking about some developing country or whatever -- I couldn't believe when it was New York City, and what happens was that I discovered that the ACS were – incidentally, I’m terribly sorry they refused to appear. They also refused to appear in my film which only tells you how much they have to hide. But I discovered the ACS were basically providing children on a conveyor belt process, into children they’ve taken into care. Many of the children incidentally had been taken by force from their parents or guardians and put into either foster homes or children’s homes in the city. One particular home we concentrate on is the Incarnation Children's Center in Harlem. And we discovered they were carrying out tests which even under federal rules are certainly illegal. You have to be clear, to use foster children in experimentation, it's prohibited unless there is a direct benefit to those children. You know, what I would have liked to have asked the ACS had they appeared today was what was the benefit of the herpes experiment at Incarnation all about? Why did they give double doses of the measles vaccine in another experiment and why won't they publish the results? This is the real question. Why won't they publish the results? The answer we can all guess at.
AMY GOODMAN: On the issue of the herpes experiment, what was it?
JAMIE DORAN: They were actually carrying experiments out on children with HIV linked to herpes, and with absulutely no clear explanation as to any benefit whatsoever it would be to the children. Why were they giving children -- the key here is that these children have no -- they have been taken from their parents or guardians, and put into the system -- effectively, their legal parent is now the ACS. And it's the ACS that then volunteers them for this program of experimentation, and this is absolutely shocking.
AMY GOODMAN: Tell us about Jacqueline Herger.
JAMIE DORAN: Jacqueline had actually worked at the home -- for the Incarnation -- for about five years. She simply, you know, loyally carried out giving the drugs to kids, et cetera, never questioned the doctors. The only time she ever questioned it was when she decided to adopt two kids she had grown to love at the home, and she was told she had to carry on the medication that had been insisted upon by Incarnation. She saw them getting more a and more sick, more ill, and decided one day simply to take them off the medication. Of course, the results were astonishing. They became healthy, they became vibrant, great little kids. The results of that, the ACS discovered that she had taken them off the medication, and there was a knock on the door, and the next thing she knew, the children were taken away. Now this despite the fact she brought in private doctors, given them private health care, she’d given them fantastic education. They were taken away, and either put into some foster care home or some children's home. She doesn't know. They won't tell her, and lord knows her biggest fear is that they have been put back on experimentation.
AMY GOODMAN: In your piece, you talk about how her job was to treat the kids with HIV at a New York children's home. Nobody had told her the drugs she was administering were experimental or highly toxic. And you quote her saying, “We were told that if they were vomiting, if they lost their ability to walk, if they were having diarrhea, if they were dying, then all of this was because of their HIV infection.”
JAMIE DORAN: Yes.
AMY GOODMAN: In fact, it was the drugs, you write, that were making the children ill, and the children had been enrolled in the secret trials without their relatives' or guardians' knowledge.
JAMIE DORAN: There are enormously serious side effects from these drugs. You should also be clear that we're talking about up to 20 drugs in a single cocktail given to individual children. We're talking about drugs like didanozine, which is a very toxic drug; zidovudine, which is the famous azt which can cause severe anemia; nevirapine, that's the drug that’s been known to cause Steven Johnson's Syndrome, which is an enormously painful flaking of the skin. I mean, I’ve seen pictures myself, and it’s as if a young child has just been pulled from a terrible fire. And they’re giving these cocktails of drugs to these kids, and when a researcher pushes too far, who do these kids turn to? They don't have any parents. Their parent is the ACS. This is the horrific side of it all. They have -- they're totally and utterly vulnerable.
AMY GOODMAN: We're also joined by Vera Sharav, who has been looking at the whole issue of trials and issues of consent. Now, some might say that these drugs may make people very sick, but ultimately, they'll make them better. What is your response?
VERA SHARAV: That's the hope, of course, but these children are not consenting adults. They cannot evaluate the risks and benefits, and whether they have something to gain for them. They require a personal advocate. Because they have no parents, it makes them doubly vulnerable. The federal law or regulations, really, mandate that children in foster care may only be used in experiments involving greater than minimal risk, only if there is a direct benefit to them, or if the study examines their situation as foster care children. Now, these were drug trials. These had nothing to do with being in foster care. The trials were phase one and phase two. That means they are highly experimental safety studies. They're examining the safety of the drugs in children, often testing them in children for the first time. Our question, and we filed a complaint both with the FDA and with the federal office of human research protection. Those two investigations are ongoing. Our question was, why did these children not receive the best standard care that was available at the time? That is their right. They should not because they're vulnerable, because they're wards of the state be simply taken and used as a means to an end. The end being, as you said, potentially, perhaps, possibly improved treatment. That -- the skip and jump between a clinical trial and clinical care -- there is a huge gap there because the unknown is there. Secondly, many of these drugs, and we have, you know, the adverse effects are as Jamie said, quite horrendous.
AMY GOODMAN: I'm sorry ACS wouldn't join us. We even asked them if they would join separately from Jamie Doran and they said no. But they sent a statement that said the single case used to build the story was described in a way that was blatantly inaccurate. They're talking about your BBC documentary, Jamie, Guinea Pig Kids. They say part of a foster parent's job is to ensure child safety including routine medical checks as well as following doctor-prescribed medication and treatment. Should a foster parent fail to live up to these responsibilities, we have to intervene. If we find that the foster parents are endangering the child’s health or not meeting the child’s needs, removal of the child from his or her home may be necessary and appropriate for the best interests of the child. Jamie Doran.
JAMIE DORAN: I have heard this claim. I'm wondering if the ACS have actually watched the film. They keep referring to this single case. There are three, clear, specific cases in that film. I also spoke to numerous children and guardians, most of whom were too frightened to appear on the program. If you want your kids back out of foster care or one of these children’s homes, the last thing you do in New York City is take on the ACS. But I think they should be aware, the BBC film was actually the shop version, the 28-minute version of my film. Okay. I hope the ACS is looking forward to seeing the longer version, of which there are more cases, additional to that. I have statements written and verbal statements, recorded statements from other children and parents. So, they're not going to get away with that.