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Award-winning BBC reporter Jamie Doran breaks the wall of silence after disclosure that New York City orphans have been used as test subjects in dubious medical experiments.  Children, too sick to move or speak, lie sprawled around a playroom. Some sit in wheelchairs amid younger kids tottering aimlessly, their coordination hindered by severe brain damage. Others are deformed, their limbs twisted. Many of the little ones have tubes surgically implanted to pump milky-white fluid through holes in their stomachs.
These wards of a New York City orphanage are human guinea pigs. HIV-positive and some only a few months old, they have been enrolled in toxic experiments without the consent of guardians or relatives. Many of these children were taken forcibly from their homes by decree of a seemingly benevolent municipal agency, the Administration for Children's Services (ACS). Most of these drug trials were co-sponsored by giant pharmaceutical companies and the National Institute of Health (NIH). In conjunction with the ACS, hospital administrators, doctors and their subordinates helped to carry out the experiments, which apparently led to severe injury, deformation, brain damage and even death for some of the subjects. In New York City more than 23,000 children are either in foster care or independent homes supervised by religious organizations on behalf of the local authorities. Most of these kids are black or Hispanic. Some are born addicted to crack; others are HIV-positive. For more than a decade, the ACS admits, 465 children have been forced to receive dubious experimental cocktails provided by such pharmaceutical firms as Merck, Bristol-Myers Squibb, MicroGeneSys, Biocine, Glaxo Wellcome and Pfizer. There have been allegations that these clinical trials have killed children. What is certain is that most of the experiments were cruel and unnecessary. "They tested these very highly experimental drugs, Phase 1 and Phase 2," says Vera Sharav of the Alliance for Human Research Protection. "Why didn't they provide the children with the current best treatment? That's the question I 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." In studies conducted under the auspices of the foster-care system, children were administered multiple concoctions simultaneously, at up to eight times the usual doses. No one seemed terribly concerned what effects AZT, Nevirapine and vaccines for herpes and chicken pox would have on the kids. "We're talking about serious, serious side effects," says Dr. David Rasnick, a visiting scholar at the University of California at Berkeley, who specializes in AIDS research. "These children are going to be absolutely miserable…they're going to have cramps and diarrhea, and their joints are going to swell up. They're going to roll around the ground, and you can't touch them." Rasnick describes some of the drugs administered in the experiments as "lethal." For example, Nevirapine can cause severe liver toxicity. Another potential side effect is Steven Johnsons Syndrome, which is characterized by painful flaking of the skin. Government documentation (available at ClinicalTrials.gov) lists some of the experiments carried out on children. One involved a herpes treatment; another gave subjects double doses of a measles vaccine. One trial involved administering cocktails of drugs with side effects that included severe abdominal pain, muscle wastage and organ failure. How could this happen in America? ince the 1980s, activists have been pressuring the government to rush new AIDS drugs onto the market. Since then, Liam Scheff maintains, the relationship between the NIH, FDA and drug companies has grown incestuous. Scheff, the investigative reporter who originally broke this story and brought it to the BBC, claims that drug companies were motivated to co-sponsor orphan drug studies with the NIH "to keep old, failed drugs like AZT on the market." "When a profitable drug fails in one population," Scheff explains, "its manufacturer will try to find a use for it in another. With AIDS drugs, they've dumped drugs that harmed and even killed adult males into pregnant women and their children." "A drug company only has to alter a drug slightly, or simply change its name," he continues, "to be able to claim a new use. They run it through new clinical trials co-sponsored by the NIH, a taxpayer-funded government agency. As such, the NIH publishes lots of data and claims it's fighting the war on AIDS, which justifies its growing budget. Conversely, drug companies get to run their old, failed drugs through new trials subsidized by taxpayers. It's a win-win situation. The only losers are orphans." The NIH will partner with a hospital and a government-sponsored foster-care system. Suddenly, they have an endless supply of subjects on which to test-sick youngsters with no guardians. "You would not expect too many parents to volunteer their children for such experiments," says the Alliance for Human Research Protection's Vera Sharav. "This means that if the researchers want to do the experiments 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 don't have anyone but the city agency that is their guardian on paper." And how can anyone believe that drugs proven devastatingly toxic in adults might benefit infants or children? "When asked by a reporter or a city councilperson, the doctors will say they're offering the most advanced treatment to these kids," Scheff says. "That's not true. If you review the specific drugs used in the studies, it becomes obvious that that's totally contradictory." Scheff goes on to explain why the NIH and the FDA don't restrain the drug companies: "The NIH and the FDA are the drug companies. It's unclear anymore where one stops and another begins. It's the same if I say that General Dynamics and Raytheon are the Department of Defense. The NIH is an organization that works as a liaison between the drug companies and the public they too often pretend to serve. The job of the NIH is to keep drug companies in business, and less and less to serve the public." eople do things for a reason, good or bad," says 15-year-old Carlos (not his real name), who was reluctant to be interviewed. "We have to forgive them for what they do." Soon after being born to an HIV-positive mother, Carlos was sent to the Incarnation Children's Center-a New York City nursing facility for children and adolescents with HIV or AIDS-and has spent most of his life in foster-care facilities. From a distance, Carlos looks like a typical urban teenager: reversed baseball cap, bomber jacket hanging off his shoulders and baggy jeans. On close examination, his frailty is starkly apparent. The youth stands 5-foot-10, but his arms and legs are so thin, they appear as if they'd snap at the slightest touch. His eyes are sallow, sunken and better fitted for a man 50 years older. Today, Carlos lives in Harlem with his aunt, a teacher. She was frightened that if the ACS heard that he'd spoken to the press, the boy could be taken away from her and put back on the experiments once again. It was around ten years ago that Carlos had been removed from his family after their refusal to continue administering drugs at home, because they were making him ill. Twice he'd ended up on life-support. But the ACS knew best. Carlos was placed in a children's home, which had become a virtual conveyor belt of sick kids on which doctors could test new drugs. He was perfect: Not only was the boy black, poor and HIV-positive, but also his family couldn't afford a private attorney. Having taken him into its care, the ACS became his official guardian. Incarnation Children's Center is under the jurisdiction of the Archdiocese of New York's Catholic Charities. The Center is housed in a refurbished convent in upper Manhattan. In 1992, Incarnation partnered with nearby New York-Presbyterian Hospital and became a testing ground for clinical drug trials. Since the late 1990s, children have been used in experiments. If a child refused to take a given medication, he or she was force-fed through a tube surgically inserted into the stomach. Both Incarnation Children's Center and its public-relations firm refused to comment about activities within the facility. acklyn Hoerger was a pediatric nurse at Incarnation for more than five years. She says doctors there insistent that any of the children's pain or suffering had nothing to do with the experimental drugs. "At the time, it did not occur to me that anything was wrong," Hoerger recalls. "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." Hoerger changed her mind after she and her husband had adopted two little girls from the home. Despite receiving the utmost care and attention, their conditions continued to deteriorate. "I gave them good-quality food," Hoerger says, "and the best private schooling they could get, occupational therapy, physical therapy, speech therapy and tutoring, the best psychologist that I could find on all levels, and I just didn't seem to be making any headway. The only thing that was left was the medication that I was giving them." Hoerger took the children off the drug regime and, almost immediately, their health and happiness visibly improved. For the first time they were able to go swimming and cycling. Both the kids' social worker and mental-health visitor were delighted. But when the ACS discovered that their mother had stopped administering the girls' medications, there was a knock on the door. "It was a Saturday morning," Hoerger says, "and they had come a few times unannounced. So when I saw them at the door, I invited them in, and they said that this wasn't a happy visit. And at that point they told me that they were taking the children away. I was in shock; I couldn't believe it." For refusing to administer drugs, Jacklyn Hoerger lost the children and was also convicted of child abuse. Four years later she still has no idea what happened to the girls she'd grown to love. According to records, more than 50 children in 13 experiments from Incarnation were offered up for experiments. An unknown number of others came from foster homes and other children's facilities under the supervision of the ACS, which was granted far-reaching powers in the 1990s by then-Mayor Rudolph Giuliani. After a particularly horrific child-abuse case, literally thousands of children were effectively rounded up and placed in foster care. "They're essentially out of control," says David Lansner, a family lawyer in New York. "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." Inexplicably in 2002, the trials at Incarnation suddenly stopped. But documentation shows that similar experiments continue at up to six other locations in New York City's metropolitan area. According to the New York Post, the state Health Department has launched an investigation. Also, the ACS itself has agreed to hire an independent research firm to look into the allegations. The agency reports it will form a panel of national health-care experts to review the findings. "We do know that several [children] passed away during the course of these experiments, and we do know that some are still involved," says Bill Perkins, the New York City Council's deputy majority leader. "And there is somewhat of a secrecy about the whole thing, I must say. It has not been easy to get through the bureaucracy as to exactly what this is all about." Others believe that the damage is already obvious. "They were just experimenting, like you had a bunch of lab rats, an unending supply," says AIDS researcher David Rasnick. "You had subjects, you had drugs, and you were just experimenting, throwing things around." Liam Scheff, who has written numerous articles on AIDS and related topics, contributed to this report. |