Jugendamt New York: Arzneimittelexperimente in Kinderheimen
Jugendamt New York: Arzneimittelexperimente in Kinderheimen
Das Erste | Mittwoch, 10.08.05 | 23:43 Uhr Kinder als VersuchskaninchenNDR (Stern.) | Länge: 30 Minuten Medizin-Skandal in New York Film von Jamie Doran NOTIZ: In einer neunmonatigen Recherche deckte Reporter Jamie Doran im Auftrag des NDR und der BBC einen erschütternden Medizin-Skandal auf. Das Jugendamt von New York zwingt Kinder aus den ärmsten Bezirken der Stadt, an Arzneimittel-Versuchen teilzunehmen. HIV-infizierte Kinder - oft nur einige Monate alt - werden als Versuchskaninchen missbraucht. Falls sich die Eltern gegen die Tests der stärksten bekannten AIDS-Medikamente an ihren Kindern wehren, entzieht ihnen das Jugendamt das Sorgerecht und bringt die Kinder in Heimen unter, wo die fragwürdigen Arzneimittel-Experimente ungehindert weitergeführt werden. Für derart drastische Maßnahmen benötigt das New Yorker Jugendamt, ACS, nicht einmal einen Gerichtsbeschluss. In der Amtszeit des ehemaligen Bürgermeisters Gulliani wurde die Behörde mit weit reichenden Sonderrechten ausgestattet. Jamie Doran spricht mit Eltern und Vormunden, denen die Kinder weggenommen wurden und die nicht den geringsten Hinweis haben, wo ihre Kinder heute sind und ob sie überhaupt noch leben. Im Zentrum der anrührenden Reportage steht das katholische "Incarnation"-Kinderheim. Ein 15-jähriger Junge schildert vor der Kamera, welche Experimente im Heim durchgeführt wurden. Sobald sich eines der Versuchs-Kinder weigerte, die AIDS-Medikamente mit ihren drastischen Nebenwirkungen weiter einzunehmen, operierte man ihm einen Schlauch in den Magen, durch den dann die Medikamente zugeführt wurden. Dieser Junge überlebte - viele andere Kinder überstanden die Experimente nicht. Sie liegen heute in einem Massengrab in der Nähe von Manhattan. http://programm.daserste.de/archiv_detail.asp?sdatlo=10.08.05&dpointer=22&anzahl=30&id=X000210838
New York's HIV experiment
Last Updated: Tuesday, 30 November, 2004, 09:21 GMT
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.
Incarnation Children's Center, Harlem 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.
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.
I've had many ACS case workers tell me: 'We're ACS, we can do whatever we want' David Lansner, family lawyer
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.
Dr David Rasnick from the University of Berkeley Dr Rasnick is internationally renowned for his work on numerous diseases, including cancer
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.
Garfield (left), pictured with his grandmother, is enrolled in HIV drug trials Regina Mousa's grandson (left) is HIV positive and in a foster home
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.
Guinea Pig Kids was broadcast on Tuesday, 30 November, 2004, at 1930 GMT on BBC Two (UK).
GUINEA PIG KIDS Tuesday, 30 November, 2004 1930 GMT on BBC Two (UK)
Re: Jugendamt New York: Arzneimittelexperimente in Kinderheimen
http://www.guineapigkids.com/
This website is dedicated to Guinea Pig Kids - a BBC documentary that 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. (This is a slightly edited version of the complete documentary that was broadcast on Tuesday, 30 November, 2004, at 1930 GMT on BBC Two in the UK. )
http://www.guineapigkids.com/
See the film for yourself!Watch it nowDownload to watch laterDownload to iTunes/iPod Read and/or print out a copy of the transcipt for the video here.
Re: Jugendamt New York: Arzneimittelexperimente in Kinderheimen
Transcript for the BBC documentary Guinea Pig Kids
This is a slightly edited version of the complete documentary broadcast on Tuesday, 30 November, 2004, at 1930 GMT on BBC Two in the UK.
Liam Scheff has provided a few comments in brackets. The rest is from the BBC transcript of the film.
The Narrator throughout is Amanda St John.
Speaker: We have freedom in this country and thats a wonderful thing isnt it? We have freedom of religion and freedom of speech and thats one of the cool things about being an American.
Narrator: Battery Park, in the heart of downtown New York. And a hymn to America in the last of the summer sunshine. New York is the richest city, in the richest country in the world. But just a few miles uptown live some of the poorest communities in America.
In the Bronx three grandchildren try to bring their grandmother up to date with the latest fashions. But two people are missing from this picture. Veronica Momodu recently died of AIDS.
[ed - This is the one piece of the film I think is not as accurate as it could be. She didnt die of Aids, as in a long, debilating death. She was an African immigrant. Her son had been taken from her by the state, because she did not want him in an AIDS drug trial. I was working with her to appear in the film and tell her story. She was depressed and anxious, and terribly distraught over not seeing her child.
A few weeks before filming, she passed out in her home, again, after months of stress from not being able to see her child, and not knowing where in the city he was. She was brought into the hospital passed out, after having, I was told, a seizure. I believe she was drugged heavily, and with the standard Aids drugs, because she had tested HIV positive. In any case, three weeks after entering the hospital and starting the drugs, she was dead.]
Narrator: It was left to her mother, Regina, to bring up three granddaughters and a grandson, Garfield, whos HIV Positive. Veronica and Regina had wanted to have a say in the treatment Garfield received.
But instead the New York authorities insisted Garfield stay on drugs and medicines, which even the other children could see were making him ill.
Nanju [family member]: When he was drinking the medicine sometimes at night, it was in the summer time too, and he would say, mummy Im cold, Im cold or he would itch his body all over, non-stop.
Catherine [family member]: And every time he said he was cold, my aunt would tell my uncle to put the heat up, he put up the heat a lot of times, but he kept saying he was cold.
Interviewer: Is this why your family decided to stop the medicine?
Nanju: Yeah, my aunt stopped it because he wasnt feeling comfortable.
Catherine: And he started to get well, but when she went for a check up, they gave him the medicine again without her knowing it.
Interviewer: And did he get sick again?
Catherine and Nanju: Yeah.
Regina Mousa [Grandmother]: I dont know what type of medicine they were giving. The boy was allergic to sulphur and they give it to him and hes scratching all over his body and he lost his appetite, he dont eat and he was getting skinny and skinnier.
Narrator: Convinced that the medicines were making things worse, not better, they turned to their hospital doctor for advice. He made an unexpected offer.
Regina Mousa: My daughter told me, she said when she went to see the doctor and that time it was the childs appointmentthe man said he would be giving her twenty-five dollars a month if they can put the child on experimental basis.
She said I will think about it and she said No. Then the doctor said You will regret it.
Narrator: Reginas daughter took Garfield off all medication. Almost immediately his health improved. Then there was a knock on the door.
Regina Mousa: They came to take the child and they came with police. I think it was three or four policemen.
Narrator: In New York, you dont need a court order to take a child from its parents. The Administration for Childrens Services, or ACS, has exceptionally strong legal powers to decide whats best for the citys kids.
David Lansner [Family Lawyer]: Theyre essentially out of control; Ive had many ACS case workers tell me; were ACS, we can do whatever we want. And they usually get away with it.
Narrator: Garfield simply disappeared into the system; one of twenty-three thousand children placed either with foster parents or in childrens homes.
This Catholic-run home, the Incarnation Childrens Centre in Harlem, is where many HIV children end up if their parents or guardians refuse to medicate them.
For years it was the centre of highly controversial and secretive drug trials on orphans and foster children as young as three months old.
Jacklyn Hoerger [Pediatric Nurse]: At the time it did not occur to me that anything was wrong because we were told by the doctors that these were all steps that were going to happen, to be expected because they were all HIV-positive.
[ed Jacklyns story was part of the initial story on ICC, The House That AIDS Built, in a segment called The Nurses Story. Hoerger has also been interviewed by Essence Magazine and the New York Post.]
Narrator: Jacklyn Hoerger is a pediatric nurse who worked at Incarnation for five years.
Jacklyn Hoerger: If they were vomiting, if they lost their ability to walk, if they were having diarrhoea, if they were dying; that all of this was because of their HIV infection and to be expected and that we were doing the best we could to save them from that.
Narrator: Jacklyn was completely unaware that she was party to experiments on children.
Jacklyn Hoerger: It didnt come as my first thought at all to question the medication and since I had worked with pediatric AIDS for many years and had given the medication, I just faithfully gave it as I was told by the doctors.
Narrator: We found documentation listing some of the experiments carried out on HIV children at the home. One was for treating herpes; another involved giving children double doses of the measles vaccine.
And yet others involved whole cocktails of drugs with side-effects admitted by the manufacturers including: severe stomach pain, muscle wastage, organ failure and many more.
Dr. David Rasnick [University of Berkeley]: Side-effect is a euphemism for, for undesired direct effects. The effects of the anti-HIV drugs are quite serious, in fact, in fact if you look at the insert that comes with these drugs youll see virtually all of them will have a black box warning label which is the highest, most severe warning that these drugs can have and still be prescribable to human beings before theyre taken off the market. Theyre lethal.
Narrator: Three thousand miles west of Manhattan, Dr. David Rasnick is internationally renowned for his work on numerous diseases, including cancer.
Dr. David Rasnick: Ill scroll that up a little so you can see the years and everything. And its Aids cases, deaths and
Narrator: Hes studied the effects of HIV drugs on patients, particularly children.
Dr. David Rasnick: The young are not completely developed yet; the immune system isnt completely mature until a persons in their teens, typically.
Narrator: We asked for his opinion on some of the Incarnation trials.
Dr. David Rasnick: Were talking about serious, serious side-effects. Didanosine, all by itself is, is a very dangerous drug. Zidovudine is our famous AZT, which has never been shown to be life saving, it also causes severe anemia. Nevirapine is the drug that also causes that Stephen Johnson Syndrome, the flaking of the skin and its very, very dangerous and debilitating, its horrible and painful and also lethal.
These children are going to be miserable; theyre absolutely going to be miserable. Theyre going to resist taking them after a while, theyre going to probably take them when people give it to them, theyre going to suffer so much AZT by itself that theyre going to have cramps, theyre going to have diarrhoea, theyre not going to want to eat, theyre joints are going to swell up, theyre going to roll around on the ground, you cant touch them.
And I understand that the Incarnation Centre, they sent them to the hospitals, these children and they cut a hole in their belly and put a feeding tube in their belly and administer the drugs to the children who dont take these drugs.
Boy: [ed - this is "Sean" from The House that AIDS Built. He is later called "Carlos" by the film producers. Both are aliases, as per his guardian's request.] : My friend, Jolice, she never, never ever liked to take her medicine. So they used to hold her down and force it down her throat. I tell her
Narrator: This boy spent most of his life at Incarnation. Aged fifteen, after years on drug tests, he has the physique of a ten year-old.
Narrator: He didnt want to show his face. But he did want to tell the story of what happened to him in the home.
Boy: I did not want to take the medications and I did not want to, you know, do all that stuff.
Interviewer: But they insisted?
Boy: Yeah, if you want to get out of there you have to do what they say or else youre not going anywhere.
Narrator: His medical records, which weve obtained, prove that he was enrolled in drug trials while living at Incarnation. If a child refused to take the medicine, a peg-tube was inserted directly into the stomach; something he warned his friends about.
Boy: And I used to tell her every single day, please take your medicine; you dont want a tube in your stomach. But she didnt listen to me. Thats what she got. And my friend Daniel, he didnt like to take his medicine either and he got a tube in his stomach.
Narrator: Under Federal rules consent for children to take part in drug trials has to be given by their parent or guardian. But the kids at Incarnation have no independent voice. The body that is their legal guardian, the ACS, is the same body that makes the children available for trials.
Vera Sharav [Alliance for Human Research Protection]: You would not expect too many parents to volunteer their loved children for such experiments. This means that if the researchers want to do the experiment on children, they are going to look for vulnerable children whom they can get. And when you have a city government agency accommodating them; that is the biggest betrayal of those children. They dont have anyone but the city agency that is their guardian on paper but not in human ways.
Narrator: For over ten years, Vera Sharav has battled almost single-handedly with the New York authorities to come clean over the use of children in drug trials.
Vera Sharav: They tested these very highly experimental drugs, Phase One and Phase Two, why didnt they provide the children with the current best treatment; thats the question that we have. Why did they expose them to risk and pain when they were helpless? Would they have done those experiments to their own children? I doubt it.
Narrator: When we spoke to the ACS early in our investigation, they told us that no child was selected for trials without a long process of decision-making.
Vera Sharav: I would absolutely reject the idea that they go through a process. Yes, they go through a process, but it is in, in, on paper only. For example, the city department created a panel, an ethics committee that approved the experiments that were conducted at Incarnation House. Theres only one little pesky detail; the panellists all come from hospitals that conduct the trials, so they all are stakeholders in saying that it was perfectly all right.
Narrator: Most of the children in the trials are from New Yorks poorest districts. Many were born to drug addicted mothers. Over ninety-eight percent of children in foster care in the City are black or Latino.
But in New York City, where the ACS was given special powers by former Mayor Rudi Giuliani, even professionals realise they are fighting a losing battle.
Jacklyn Hoerger, the nurse who had once administered the drugs to children at Incarnation, was about to discover just how difficult it really was. Shed decided to add to her existing family by adopting two young girls shed grown to love at the home.
Jacklyn Hoerger: They were half-sisters and the younger of the two was pretty much immobile; didnt know how to walk, didnt know how to play, didnt speak much, didnt know how to show her emotions or feeling whatsoever. And her sister was the opposite; she was hyperactive, couldnt sit for a minute, couldnt be still for a minute and wouldnt eat and the younger of the two overate. So it was a complete mess.
I gave them all that I could, on every level. I gave them the good quality food, the rest, the best private schooling they could get, occupational therapy, physical therapy, speech therapy, tutoring. The best psychologists I could find on all levels and I just didnt seem to be making any headway. And the only thing that was left was the medication that I had been giving them.
Narrator: Jacklyn decided to take the children off the drug regime which Incarnation had insisted upon. The results were almost instantaneous. The older girl began eating properly for the first time.
Jacklyn Hoerger: She would ask for seconds and thirds and it started showing on her body. When we swam at a swim club that we go to she had a swimsuit on about a month or two after I took her off the medication, I just looked at her with those loving mother eyes, just seeing a daughter look beautiful, rounded out, muscular, strong and healthy. It was a wonderful sight.
The younger daughter, I would say, the main change after I took her off the medication, it felt that her nerves became more and more healthy and I taught her how to walk, run, jump on the trampoline, play, ride the bicycle, swim and it was a joy to watch her.
Dirk Hoerger [husband]: I remember the first Christmas when they all got new hats and they sat in the corner all three of them together next to the Christmas Tree in their new hats surrounded with their presents and Ilene had this little shy smile, Olivia beaming from ear to ear and Leah sitting over them.
Daughter [Jacklyn and Dirks daughter]: And on Christmas morning, I woke and there was the faintest red on the horizon and so I turned on the light and we all got up and we opened our presents, you know, our stockings, and we started yelling out the window; thank you Santa Claus. And then Mommy came stomping, stomping down the stairs; how dare you guys, its only one oclock in the morning.
Narrator: Not long after those Christmas celebrations, there was a visit from the ACS.
Jacklyn Hoerger: It was a Saturday morning and they had come a few times unannounced so when I saw them at the door, I invited them in and they said this is not a happy visit and at that point they told me that they were taking the children away. I was in shock; I couldnt believe it and we were, it was a home day and they were in their pajamas and
Narrator: The social worker involved in the case was Demetrius Travis. He was on holiday when a temporary case worker arrived at their door with the ACS.
Demetrius Travis [Social Worker]: The family did not agree with the drugs that were being given to these children who had HIV and as a result of the parents not agreeing with the, the medicinal, I guess, regimen that was being administered to the children when it was learned that that regimen was not being followed the children were taken back into foster care.
Interviewer: Did that decision upset you?
Demetrius Travis: It bothered me yeah, because I can remember how well off these children seemed to be and, and that just wasnt, that wasnt just my opinion that was the opinion of this mental health professional who had dealt with these children over a period of, I would say, a year and a half, two years.
Narrator: As a result, Jacklyn was taken to court and convicted of child abuse.
Interviewer: Where are they now?
Jacklyn Hoerger: I dont know. Im not allowed to know.
Narrator: Jacklyns greatest fear is theyve been returned to Incarnation Childrens Centre or a similar home in New York where they might be subjected to experimentation.
Bill Perkins [New York City Council]: Well it is shocking that in New York City, experimental drug treatments are being used on children who are in foster care.
Narrator: Even senior politicians in the city have found it impossible to get information about the trials. Bill Perkins is Deputy Majority Leader on New York City Council.
Bill Perkins: We do know that several have passed away during the course of these experiments and we know that there are still some involved and theres been somewhat of a secrecy about the whole matter, I must say. It has not been easy to get through the bureaucracy as to exactly what this is all about.
Narrator: In a mass grave owned by the Roman Catholic Church close to Manhattan, over a thousand childrens bodies, including some who were enrolled in the trials, lie beneath a tarpaulin. Officially their deaths are recorded only as resulting from natural causes.
For months, we tried to get answers from those behind the trials from Columbia Presbyterian Hospital, where many of the tests were devised. From Incarnation Childrens Centre. From the Catholic Church. And from the ACS; the authority ultimately responsible. None would comment.
The drug companies which have supported trials at Incarnation include some of the worlds largest. Among them Britains own Glaxo Smith Kline.
They also refused to be interviewed for this program saying only that all trials have stringent standards and are in compliance with local laws and regulations.
In Washington, officials at the National Institutes of Health insist that any participation of children in drug trials should be voluntary in every sense.
Lauren Wood [National Institutes of Health]: We let parents know that participation is always voluntary; that they can stop participating in a trial at any time. Many parents need to have that reinforced, that participation is voluntary. We also get the assent of the child, when its appropriate.
Narrator: But what if that child is in the care of New York City authorities which have volunteered it for the trials in the first place?
David Lansner [Family Lawyer]: New York Law hasnt made clear where the boundaries are between the parents right to provide and control the treatment for the child and the ACSs right. And as a result, the parent loses out and the child loses out because ACS simply says; were going to make all the decisions.
Narrator: In two thousand and two, the trials at Incarnation were suddenly halted. Attempts to uncover why exactly meet either with silence or a call to the NYPD to have us removed.
During the making of this program the Food and Drugs Administration announced an investigation into the trials, which we have discovered are continuing at at least six other locations in New York City.
Meanwhile, Regina Mousa from the Bronx is now in contact with her grandson, Garfield. Shes won a court order granting her visitation rights.
This is her grandsons new foster home in the Bronx. The boy was hungry and Regina had brought food. Although the house was in poor condition, it was better than his previous one where the foster mother had allegedly beaten him.
Garfields new foster mother receives six thousand dollars every month for him and three others.
What makes her a better guardian in the eyes of the authorities is that she gives the medicine demanded by the ACS and Regina refuses.
Regina Mousa: I want to get him back. I want to get him back. Because I dont want my child to remain in experimental basis. Not my own grandson. Because we love him.
Narrator: Jacklyn Hoerger has had no news of the two little girls she was adopting since that day when the ACS arrived on her doorstep.
Jacklyn Hoerger: We werent given any rights whatsoever. I even wrote a letter to the social worker appealing to her humanity, to just let us know something. But I dont know anything.
Interviewer: Did you ever say to the nurses or the doctors that you felt the medicine was wrong?
Carlos: I try; I just try to be me. I dont bother anybody. People do things for, like I said, a reason; good or bad, we have to forgive them for what they do.