[Congressional Record Volume 151, Number 2 (Thursday, January 6, 2005)]
[Extensions of Remarks]
[Page E37]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                  ABUSES IN PEDIATRIC HIV DRUG TRIALS

                                 ______
                                 

                         HON. CHARLES B. RANGEL

                              of new york

                    in the house of representatives

                       Thursday, January 6, 2005

  Mr. RANGEL. Mr. Speaker, a November 30, 2004 report by the BBC shed 
light on a disturbing issue regarding an often-overlooked population. 
The report detailed what it argued was the excessive, and potentially 
illegal, use of experimental drugs on HIV positive orphans and foster 
children under the supervision of New York City's Administration of 
Children's Services.
  The report argues that these children, the majority of whom come from 
minority backgrounds, were forced to take experimental HIV medications, 
which caused painful and debilitating side effects. It further alleges 
that the drugs were given without the consent of the children's 
relatives or guardians. Those guardians who became aware of the drug 
regime were forced to consent, or risk losing the children to child 
welfare authorities.
  Standards for the administration of drug trials on children should be 
followed at all times. The fact that these children are wards of the 
state does not preclude accepted standards and regulations from being 
followed.
  The accusations in the BBC report are indeed troubling, and 
necessitate a fuller examination by governmental authorities. As such, 
I find it appropriate for the Congress to look into the excessive use 
of experimental drug therapies on children, especially the most 
vulnerable. It is my hope that such an examination would commence as 
soon as possible after the start of the 109th Congress.
  The greatest blessing afforded to a nation is the health and well 
being of its children. We must ensure that these blessing extend to all 
children, especially those without homes and families of their own. On 
this point I know my colleagues are in agreement, so I am confident 
that action will be taken on this important issue.

                   [From the BBC NEWS, Nov. 30, 2005]

                       New York's HIV Experiment

                            (By Jamie Doran)

       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 diarrhea, 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, diarrhea 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.

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