Saturday, December 04, 2004

More Human Guinea Pigs

Several people (for example, here) have criticized my last post as paying insufficient attention to the charge that children were being removed from parental custody if parents declined to participate in research. Re-reading my original post, I can see how it might be read by someone who doesn't know me as, "AIDS clinical trials are good, so it's okay that people were forced into them." Of course that's not what I meant to convey at all.

Take a look at the full transcript of the documentary. I read it through, trying to find an example of a parent or guardian who lost custody for refusing experimental participation. There are two candidates: the story of the guardians of a child named Garfield, presented in the first five minutes, and the story of the nurse Jacklyn Hoerger, which is covered at length in the second half of the documentary. Let's look at both of them closely, plus a third story in one of the Liam Scheff pieces that served as source materials for the documentary.

According to the transcript, Garfield's aunt and grandmother had concerns about side effects of his prescribed medications, so they stopped the meds. At the urging of his doctor, meds were re-started. When the family asked the doctor if they had any other options, he suggested that they could enroll in a clinical trial. They refused, and (again, according to the transcript):
Regina’s daughter took Garfield off all medication. Almost immediately his health improved. Then there was a knock on the door.
In other words, this family didn't lose custody for refusing to participate in the clinical trial, they lost custody for refusing to provide Garfield with any medical treatment whatsoever for HIV. The family says "his health improved" off meds, but anyone familiar with the course of HIV knows that labwork tells the true story. If the child's CD4+ cell (T-cell) count were declining rapidly, for example, then it would be perfectly reasonable for his physicians to believe that withholding all treatment constituted medical neglect - and to report it to the state authorities.

The Liam Scheff article carries a similar story about a great-aunt who withheld all conventional medical treatment from her HIV-positive wards, instead taking them to a naturopath. Again, this was not a case in which she lost custody for refusing to participate in clinical trials, it was a case of refusing all conventional, approved, treatments for HIV. (She says she refused "AZT, Nevirapine, Epivir, Zerit," the latest of which was approved in 1996. The children were taken from her custody four years ago.) One of the children subsequently participated in a clinical trial at Incarnation Children's Center, but no details are given as to the nature of the study. Participation in a clinical trial might involve an experimental drug or combination, but it also might involve something as trivial as a change in dosage times - for example, testing the efficacy of once-a-day Epivir over twice-a-day Epivir. In any case, there is no suggestion whatsoever that she lost custody for refusing participation in clinical trials. She lost custody for refusing to treat the children with any approved HIV medications at all.

Jacklyn Hoerger's story takes up almost half of the BBC documentary, and more details are given in a Liam Scheff profile. The profile makes it clear that Hoerger also stopped all medications for the children in her care. Not experimental medications - the only drugs she mentions by name are Nevirapine and AZT, both FDA-approved before the children came to live with her in 1996 - but all medications:
I was looking for answers, so I went to a lecture on HIV by Philip Incao, an MD with a background in Holistic Medicine. He talked about problems with the HIV diagnosis, the toxicity of the drugs and their effect on the immune system. What he said made me feel angry and threatened.

I confronted him after the lecture. I said, “I have two HIV positive children in my home right now, and you’re recommending that I take them off the drugs?” He said “Yes” “The drugs are too toxic for children.” He said that he had a better way to treat them and to strengthen their immune systems. He told me to read the book “What If Everything You Thought You Knew About AIDS Was Wrong,” by Christine Maggiore.

I read the book, and I spoke with medical professionals who all advised me that the drugs were harmful. I researched the drugs myself and reached the same conclusion. And for a good number of months, I struggled. I knew that Catholic Home Bureau and ICC wouldn’t support this, even if it was the best thing for the children’s health and survival. I had long consultations with Dr. Incao about what complementary and holistic medications to give the girls to support their immune systems. And after a great deal of research and thought, I took them off the drugs.
Although Hoerger had begun the adoption application process, at the time that she stopped all treatment, she had not legally adopted the children - they were in foster care with her. That made the state their legal guardians, not Hoerger. So this case has nothing whatsoever to do with parental rights. The state had the legal responsibility to make sure those children got adequate medical care, because they were still wards of the state. It's hardly surprising that they wound up deciding that HIV-positive children should be cared for by people with mainstream beliefs about HIV. Consider the liability the state would be under - legal and moral - if the children had died from having FDA-approved HIV treatments withheld.

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.