On Not Quite Debunking the "Guinea Pig Kids"

Just recently, I ran an article entitled Mengele Medecine, USA regarding a truly disturbing story from a BBC documentary team about abusive treatment of children with AIDS in New York. The story alleged that HIV positive children taken into care or orphaned and in state care were being used for medical experimentation, given a toxic cocktail of AIDS treatments and forced to take the drugs if they refused treatment, even to the point of stomach plugs to enable the drugs to be directly injected. I, like many others, was horrified and wrote a shocked demand for a full and independant investigation of the charges.

However, the initial rush of voices raised against any such experimentation was soon tempered. At least as far as the 'blogosphere' was concerned the primary reason that the furore died down was the news, again quickly disseminated, that a blogger had in the main debunked the accusations. The author of the blog "Respectful of Otters" had done her research well after hearing of the initial report and exposed the main 'scientific witness', Dr. David Rasnick, as an AIDS denialist - he does not believe that HIV causes AIDS or that the current treatments actually treat the disease. Furthermore, she found the BBC research to be plainly founded on articles by Liam Scheff which also based their science on a heavily denialist position. Furthermore, the parents of the children shown in the programme admitted to being influenced by other AIDS-denialists and were taking their children of all medication, perhaps even to try holistic cures. Therefore, as Rivka of "Respectful of Otters"writes.

In summary, the BBC documentary appears to uncritically embrace the theories of AIDS denialists who believe that all HIV treatments are toxic. Their primary sources of information have no scientific or medical credibility. Neither the BBC piece nor the set of Scheff articles upon which the documentary was apparently based cite any mainstream experts in HIV or human subjects research - no appeal to the FDA, no experts from the National Institutes of Allergies and Infectious Diseases. They're not credible

There seems to be no evidence that parents or guardians are losing custody of their children for refusing to participate in clinical trials. There is evidence that parents and guardians may lose custody for refusing all mainstream HIV care for their minor children. Again, as I said in my first post, one could have a legitimate discussion about the circumstances in which parents have the right to refuse medical treatment for children in their care. But it's simply inaccurate to say that these examples amount to children being taken away for the refusal to be "guinea pigs." Scheff and the BBC filmmakers have produced no evidence of that.

Rivka describes herself as a psychologist working in HIV research and treatment in the inner city. She receives no monies from any drug companies, being fully state and federally funded and is not herself involved in clinical trials of experimental medication. Her bono fides are therefore impeccable and her words to be trusted. I, and many others accept the bulk of her findings.

So, case closed, file under "media hype"?

Not quite.

There are two matters still outstanding that arise from the BBC programme. The first is that of further accusations, albeit not substantiated in the original programme, that have yet to be debunked and have yet to be given official answers by official investigators. The second is a whole question of medical ethics in the field of treating children who are not themselves effective advocates of their personal rights and have lost the advocacy of parents who could speak for their emotions from a position of empathy.

The programme includes this comment from Bill Perkins, Deputy Majority Leader on New York City Council.

We do know that several have passed away during the course of these experiments and we know that there are still some involved and there’s 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

And also alleges that:

In a mass grave owned by the Roman Catholic Church close to Manhattan, over a thousand children’s bodies, including some who were enrolled in the trials, lie beneath a tarpaulin. Officially their deaths are recorded only as resulting from ‘natural causes’

The programme notes that the Food and Drug Administration had announced an investigation into the trials, which the BBC alleged were continuing at six or more other locations in New York. In a follow-up piece by Britain's Guardian newspaper, it was noted that:

The city health department has launched an investigation into claims that more than 100 children at Incarnation were used in 36 experiments - at least four co-sponsored by Glaxo. Some of these trials were designed to test the 'toxicity' of Aids medications. One involved giving children as young as four a high-dosage cocktail of seven drugs at one time. Another looked at the reaction in six-month-old babies to a double dose of measles vaccine.

and that

Vera Sharav, president of the Alliance for Human Research Protection, said the children had been treated like 'laboratory animals'.
'These are some of the most vulnerable individuals in the country and there appears to be a policy of giving drug firms access to them,' she said. 'Throughout the history of medical research we have seen prisoners abused, the mentally ill abused and now poor kids in a care home.'
Sharav has urged the US Food and Drug Administration to investigate and has demanded full disclosure of all adverse effects suffered by the children, including deaths. Brooklyn Democrat councillor Bill de Blasio is also demanding that New York's Administration for Children's Services, which approved the trials, reveal who gave consent and on what grounds.

So, there are at least four official calls for information underway, three from within New York itself. To date, none of these investigations has made it's findings public and we all must await their findings before we can safely say "case closed".

Finally, over and above these investigations, the story has brought some ethical issues to the fore. Rivka herself voices what seems to be a consensus amongst US medical professionals.

It's certainly my belief that children don't always have the maturity and cognitive capacity to know what's best for them. Should a five-year-old be able to decide that she doesn't want to take antibiotics for an infection because they taste yucky? Should parents of a ten-year-old allow the child to refuse chemotherapy for cancer because it makes him sick to his stomach

All well and good, but this only works when there is a loving parent or guardian to be an empathic advocate or "voice" for the child. The system seems to break down when the "parent" is a faceless and beaurocratic state system. Although the National Institutes of Health says that "participation should always be voluntary, at every level, including the assent of the child where appropriate", Rivka and many others seem to have no problem with a system which becomes effectively involuntary as soon as the state is the only parent.

Do you think there is a conflict of interest when the state or a children's home acts as both sole parent and financial beneficiary of the drug trials it volunteers it's ward for? In other parts of the world, volunteer advocates fill the gap made by missing parents, speaking for the child's wishes with an adult voice. Perhaps the US system could gain a greater measure of humanity by adopting this system. What do you think?