Guinea Pig Children

[KeJia Sista]

Guinea Pig Kids

Vulnerable children in some of New York's poorest districts are being forced to take part in HIV drug trials.

During a nine month investigation, the BBC has uncovered the disturbing truth about the way authorities in New York City are conducting the fight against Aids.

HIV positive children - some only a few months old - are enrolled in toxic experiments without the consent of guardians or relatives.

In some cases where parents have refused to give children their medication, they have been placed in care.

The city's Administration of Children's Services (ACS) does not even require a court order to place HIV kids with foster parents or in children's homes, where they can continue to give them experimental drugs.

Reporter Jamie Doran talks to parents and guardians who fear for the lives of their loved ones, and to a child who spent years on a drugs programme that made him and his friends ill.

Young lives

In 2002, the Incarnation Children's Center - a children's home in Harlem - was at the hub of controversy over secretive drugs trials.

Jamie speaks to a boy who spent most of his life at Incaranation. Medical records, obtained by the This World team, prove the boy had been enrolled in these trials.

"I did not want to take my medication," said the boy, "but if you want to get out of there, you have to do what they say."

He also conveys a horrifying account of what happened to the children at Incarnation who refused to obey the rules. "My friend Daniel didn't like to take his medicine and he got a tube in his stomach," he said.

Powerless

The ACS has exceptionally strong legal muscle over the city's kids

Dr David Rasnick from the University of Berkeley who has studied the effects of HIV drugs on patients - particularly children - says these drugs are "lethal".

"The young are not completely developed yet," he says. "The immune system isn't completely mature until a person's in their teens."

So why are these children targetted? Is it simply because they cannot defend themselves?

At the beginning of this investigation, the ACS said that no child was selected for trials without a long process of decision making, but declined to comment further.

For months, the BBC tried to get information from the people responsible for the trials, but none would comment.

The companies that supply drugs for the trials are among the world's largest, including Britain's own Glaxo SmithKline (GSK).

GSK responded to BBC programme makers, saying that all trials follow stringent stardards and are compliant with local laws and regulations.

Under federal rules, consent for children to take part in drug trials has to be given by their parents.

But what if that child is in the care of New York City authorities, which volunteered it for trials in the first place?

Guinea Pig Kids was broadcast on Tuesday, 30th November, 2004, at 1930 GMT on BBC Two (UK).

Ke Jia

[ellencho]

Wow, that's really demented. It sort of reminds me of Mengele. Ugh.

[Infectious]

Kejia, where's this article from?

[xian]

That's terrible. It reminds me of....the other half dozen times our country has sanctioned unconsented studies, usually of poor, ethnic populations.

[KeJia Sista]

Kejia, where's this article from?

Oh, the BBC British Broadcasting website
Ke Jia

[KeJia Sista]

'NEW YORK FOSTER CHILDREN USED
IN DANGEROUS EXPERIMENTS WITH HIV DRUGS'

--------------------------------------------------------------------------------


The state Health Department has launched a probe into potentially dangerous drug research conducted on HIV-infected infants and children at a Manhattan foster-care agency, The Post has learned.

Some 50 foster kids were used as "guinea pigs" in 13 experiments with high doses of AIDS medications at Manhattan's Incarnation Children's Center, sources said.

Most of the ICC experiments were funded by federal grants and in some cases, pharmaceutical companies. They used city foster children, who were sent to the Catholic Archdiocese-run facility by the Administration for Children's Services.

ICC was involved in 36 different experiments, according to the National Institutes of Health Web site. One study researched "HIV Wasting Syndrome," which studied how a child's body changes when his medication is altered.

A handful of the experiments involved combining up to six AIDS drugs - so-called "cocktails" - in children as young as 3 months, a nd another explores the reaction of not one, but two doses of the measles vaccine in kids ages 6 to 7 months.

Other studies tested the "safety," "tolerance" and "toxicity" of AIDS drugs.

"They are torturing these kids, and it is nothing short of murder," said Michael Ellner, a minister and president of Health Education AIDS Liaison, an advocacy group for HIV parents.

Biochemist Dr. David Rasnick, a visiting scholar at the University of California at Berkeley and an expert in AIDS medication, was outraged because the drugs, alone or combined, have "acute toxicity which could be fatal."

He said the drugs' side effects include severe liver damage, cancerous tumors, severe anemia, muscle wasting, severe and life-threatening rashes and "buffalo hump," where fatty tissues accumulate behind the neck.

Housed in a former convent and run by the Archdiocese of New York's Catholic Charities, the foster-care agency described the experiments on its own Web site, which was abruptly shut down after The Post began making inquiries.

Archdiocese spokesman Joseph Zwilling said experiments at ICC were halted in 2002. He said he did not know why. Zwilling also said he did not know if any children had died.

An ACS spokeswoman said the agency hasn't approved any new experiments since 2000 because the "risks outweighed the benefits." She declined to explain further. That agency is also reviewing its files on the case.

Jacqueline Hoerger was a pediatric nurse at ICC from 1989 to 1993 and said the experimentation was going on even back then. "We were taught that any symptom we saw was HIV-related," said Hoerger, 43. "The vomiting, diarrhea, wasting syndrome, the neurological side effects - they were dying. There was death."

She didn't think doctors were doing anything wrong, however, until years later, when she tried to adopt two of the foster girls. When she refused to give the kids the center's high-powered AIDS coc ktails for fear it was making them sicker, ACS had social workers take the children away from her.

Advocates for children question the ethics of experimenting on foster kids - especially those too young to know what's happening to them.

"The most vulnerable, disadvantaged children are being exploited by powerful entities and used as guinea pigs as if they were not human beings," said Vera Sharav from the Alliance for Human Research and Protection.

The tests were conducted by doctors from Columbia Presbyterian Medical Center, which was affiliated with ICC until 2002 and reaped the financial benefits of the research.

"Through these trials, children at the ICC outpatient clinic gained access to state-of-the-art treatments for HIV," said Annie Bayne, a Columbia spokeswoman.

ACS policy states it seeks parental consent before a child is enrolled in a study. If the parents cannot be found, ACS's medical and legal divisions, and its commissioner, must all approve.

The condition, however, is that the experiment "offer each participating child a significant potential benefit, a concomitant minimal risk of injury or harm," ACS spokeswoman MacLean Guthrie said.

Fire Commissioner Nicholas Scoppetta, who headed ACS at the time of the experiments, refused comment.

Officials at ICC, which was established in 1989 to house and care for HIV-infected "boarder babies" left stranded in city hospitals, refused to talk to The Post.

http://www.davidicke.net/medicalarchives/badmed/hiv.html

There was a demo today in front of City Hall about this testing. It hasn't ended. Since the test was a "success" the kids are still being given the drugs.
Ke Jia

[Apollyon]

http://www.infoplease.com/ipa/A0762136.html

The Tuskegee Syphilis Experiment

The United States government did something that was wrongódeeply, profoundly, morally wrong. It was an outrage to our commitment to integrity and equality for all our citizens. . . . clearly racist.
óPresident Clinton's apology for the Tuskegee Syphilis Experiment to the eight remaining survivors, May 16, 1997

For forty years between 1932 and 1972, the U.S. Public Health Service (PHS) conducted an experiment on 399 black men in the late stages of syphilis. These men, for the most part illiterate sharecroppers from one of the poorest counties in Alabama, were never told what disease they were suffering from or of its seriousness. Informed that they were being treated for ìbad blood,î1 their doctors had no intention of curing them of syphilis at all. The data for the experiment was to be collected from autopsies of the men, and they were thus deliberately left to degenerate under the ravages of tertiary syphilisówhich can include tumors, heart disease, paralysis, blindness, insanity, and death. ìAs I see it,î one of the doctors involved explained, ìwe have no further interest in these patients until they die.î
Using Human Beings as Laboratory Animals

The true nature of the experiment had to be kept from the subjects to ensure their cooperation. The sharecroppers' grossly disadvantaged lot in life made them easy to manipulate. Pleased at the prospect of free medical careóalmost none of them had ever seen a doctor beforeóthese unsophisticated and trusting men became the pawns in what James Jones, author of the excellent history on the subject, Bad Blood, identified as ìthe longest nontherapeutic experiment on human beings in medical history.î

The study was meant to discover how syphilis affected blacks as opposed to whitesóthe theory being that whites experienced more neurological complications from syphilis whereas blacks were more susceptible to cardiovascular damage. How this knowledge would have changed clinical treatment of syphilis is uncertain. Although the PHS touted the study as one of great scientific merit, from the outset its actual benefits were hazy. It took almost forty years before someone involved in the study took a hard and honest look at the end results, reporting that ìnothing learned will prevent, find, or cure a single case of infectious syphilis or bring us closer to our basic mission of controlling venereal disease in the United States.î When the experiment was brought to the attention of the media in 1972, news anchor Harry Reasoner described it as an experiment that ìused human beings as laboratory animals in a long and inefficient study of how long it takes syphilis to kill someone.î
A Heavy Price in the Name of Bad Science

By the end of the experiment, 28 of the men had died directly of syphilis, 100 were dead of related complications, 40 of their wives had been infected, and 19 of their children had been born with congenital syphilis. How had these men been induced to endure a fatal disease in the name of science? To persuade the community to support the experiment, one of the original doctors admitted it ìwas necessary to carry on this study under the guise of a demonstration and provide treatment.î At first, the men were prescribed the syphilis remedies of the dayóbismuth, neoarsphenamine, and mercuryóbut in such small amounts that only 3 percent showed any improvement. These token doses of medicine were good public relations and did not interfere with the true aims of the study. Eventually, all syphilis treatment was replaced with ìpink medicineîóaspirin. To ensure that the men would show up for a painful and potentially dangerous spinal tap, the PHS doctors misled them with a letter full of promotional hype: ìLast Chance for Special Free Treatment.î The fact that autopsies would eventually be required was also concealed. As a doctor explained, ìIf the colored population becomes aware that accepting free hospital care means a post-mortem, every darky will leave Macon CountyÖî Even the Surgeon General of the United States participated in enticing the men to remain in the experiment, sending them certificates of appreciation after 25 years in the study.
Following Doctors' Orders

It takes little imagination to ascribe racist attitudes to the white government officials who ran the experiment, but what can one make of the numerous African Americans who collaborated with them? The experiment's name comes from the Tuskegee Institute, the black university founded by Booker T. Washington. Its affiliated hospital lent the PHS its medical facilities for the study, and other predominantly black institutions as well as local black doctors also participated. A black nurse, Eunice Rivers, was a central figure in the experiment for most of its forty years. The promise of recognition by a prestigious government agency may have obscured the troubling aspects of the study for some. A Tuskegee doctor, for example, praised ìthe educational advantages offered our interns and nurses as well as the added standing it will give the hospital.î Nurse Rivers explained her role as one of passive obedience: ìwe were taught that we never diagnosed, we never prescribed; we followed the doctor's instructions!î It is clear that the men in the experiment trusted her and that she sincerely cared about their well-being, but her unquestioning submission to authority eclipsed her moral judgment. Even after the experiment was exposed to public scrutiny, she genuinely felt nothing ethical had been amiss.

One of the most chilling aspects of the experiment was how zealously the PHS kept these men from receiving treatment. When several nationwide campaigns to eradicate venereal disease came to Macon County, the men were prevented from participating. Even when penicillin was discovered in the 1940sóthe first real cure for syphilisóthe Tuskegee men were deliberately denied the medication. During World War II, 250 of the men registered for the draft and were consequently ordered to get treatment for syphilis, only to have the PHS exempt them. Pleased at their success, the PHS representative announced: ìSo far, we are keeping the known positive patients from getting treatment.î The experiment continued in spite of the Henderson Act (1943), a public health law requiring testing and treatment for venereal disease, and in spite of the World Health Organization's Declaration of Helsinki (1964), which specified that ìinformed consentî was needed for experiment involving human beings.
Blowing the Whistle

The story finally broke in the Washington Star on July 25, 1972, in an article by Jean Heller of the Associated Press. Her source was Peter Buxtun, a former PHS venereal disease interviewer and one of the few whistle blowers over the years. The PHS, however, remained unrepentant, claiming the men had been ìvolunteersî and ìwere always happy to see the doctors,î and an Alabama state health officer who had been involved claimed ìsomebody is trying to make a mountain out of a molehill.î

Under the glare of publicity, the government ended their experiment, and for the first time provided the men with effective medical treatment for syphilis. Fred Gray, a lawyer who had previously defended Rosa Parks and Martin Luther King, filed a class action suit that provided a $10 million out-of-court settlement for the men and their families. Gray, however, named only whites and white organizations in the suit, portraying Tuskegee as a black and white case when it was in fact more complex than thatóblack doctors and institutions had been involved from beginning to end.

The PHS did not accept the media's comparison of Tuskegee with the appalling experiments performed by Nazi doctors on their Jewish victims during World War II. Yet in addition to the medical and racist parallels, the PHS offered the same morally bankrupt defense offered at the Nuremberg trials: they claimed they were just carrying out orders, mere cogs in the wheel of the PHS bureaucracy, exempt from personal responsibility.

The study's other justificationófor the greater good of scienceóis equally spurious. Scientific protocol had been shoddy from the start. Since the men had in fact received some medication for syphilis in the beginning of the study, however inadequate, it thereby corrupted the outcome of a study of ìuntreated syphilis.î

In 1990, a survey found that 10 percent of African Americans believed that the U.S. government created AIDS as a plot to exterminate blacks, and another 20 percent could not rule out the possibility that this might be true. As preposterous and paranoid as this may sound, at one time the Tuskegee experiment must have seemed equally farfetched. Who could imagine the government, all the way up to the Surgeon General of the United States, deliberately allowing a group of its citizens to die from a terrible disease for the sake of an ill-conceived experiment? In light of this and many other shameful episodes in our history, African Americans' widespread mistrust of the government and white society in general should not be a surprise to anyone. óBB
1. All quotations in the article are from Bad Blood: The Tuskegee Syphilis Experiment, James H. Jones, expanded edition (New York: Free Press, 1993).