I read the BBC article a couple of days ago, and it didn't sound right to me. Too much is missing - including anything that could be used to check the veracity of the story, such as the names of the experimental drug compounds or the names of scientists running the trials. Another detail that didn't ring true: the drugs were "supplied by major drug manufacturers including Glaxo SmithKline." Glaxo SmithKline is a major manufacturer of HIV drugs - I have several of their pens - but why the lack of specificity?
The language used in the BBC piece also seemed familiar. A vocal contingent of people oppose HIV medications, and they favor certain turns of phrase. "Human guinea pigs." "Experimental." "Toxic." They focus on side effects and subjective sensations to the exclusion of clinical or lab data. It's hard to pin down exactly, but when you've read enough of their writings you begin to recognize the tone. I heard that tone in the BBC article.
The story also broke my plausibility meter. Severely. I do research with human subjects for a living, and I have an excellent sense of the regulatory tangles and layers of oversight surrounding any research with human beings. For "protected classes" of research subjects, including children and institutionalized people, the rules are even more stringent. What happens when research protections are violated? Banner headlines and regulatory Armageddon. When a single research subject died at Johns Hopkins because of faulty study protections, the federal government didn't hesitate to shut down all human research of every kind at one of the foremost research institutions in the world. Gene therapy research was essentially halted nationwide for years because of a patient death which was linked to inadequate monitoring of research-related adverse events. Both incidents were widely covered in national news outlets, and they were everywhere in news sites for health research professionals. And yet there was not a word about the BBC documentary and its shocking allegations in Medscape or any of the other HIV sites I follow. That didn't seem plausible at all.
So I did some poking around, and instantly hit pay dirt. The documentary filmmakers state that:
We asked Dr David Rasnick, visiting scholar at the University of Berkeley, for his opinion on some of the experiments.Dr. David Rasnick is an AIDS denialist. He doesn't believe that HIV causes AIDS. He doesn't believe that AIDS is contagious or sexually transmitted. He doesn't believe in protease inhibitors, the class of drugs which, since 1997, have caused a dramatic decline in AIDS diagnoses and deaths in the developed world. He thinks HIV drugs are the problem, not the solution.
He said: "We're talking about serious, serious side-effects. These children are going to be absolutely miserable. They're going to have cramps, diarrhoea 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".
The Guerrilla News Nework led me to some articles by a guy named Liam Scheff, which the BBC filmmakers purportedly used as the basis for their research. The GNN reprinted the BBC piece with a prefacing paragraph that listed some of the compounds in question: "chemotherapy drugs such as AZT, and potent cell-killing drugs like Nevirapine." (Perhaps those drugs weren't listed in the BBC piece because they would have diminished its shock value; AZT and nevirapine are well-established, FDA-approved HIV medications.) Scheff's articles make it clear that he's been talking exclusively to AIDS denialists like Christine Maggiore; he promotes the theory that HIV tests are wildly inaccurate and that naturopathic treatment is sufficient to prevent illness in HIV-positive individuals. Shocked by HIV drugs' potential for serious toxicities, he blames the medications for all the ills suffered by persons with HIV rather than balancing the risks of medication against the risks of untreated HIV. So there are gory color photos of Stevens-Johnson Syndrome, a rare but very serious medication side effect, but no pictures of untreated end-stage AIDS patients in Africa or from the pre-drug 1980s. There is no mention of the decline in death rates since protease inhibitors were introduced in 1997.
Scheff did document that children at the Incarnation Childrens Center participate in clinical trials, as large numbers of HIV patients do. There is nothing inherently wrong with conducting medical research with children - in fact, it is necessary. Medications proven to work in adults may not work the same way in children, so children need their own clinical trials. The law requires that children cannot be subjected to research-associated risks unless the potential benefit to the child far outweighs the level of risk involved. In other words, the vast majority of children who participate in potentially risky medical research are dying and otherwise out of treatment options.
That was particularly true in the late 90s, when many of these disputed studies apparently took place. At that time, participation in clinical trials was the only way to access new life-saving treatments like protease inhibitors. The existing treatments in the late 90s were highly toxic and largely ineffective, as you can deduce from the death-rate table I linked above. For many people, getting into a clinical trial rather than waiting for the protease inhibitors to be approved for release represented the difference between life and death. So, in that context, there's nothing inherently sinister about these children's guardians (the child protection authorities) allowing them to take part in clinical trials.
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 is definitely a place for thoughtful argument about whether parents have the unrestricted right to withhold medical treatment from their children. There is a place for thoughtful argument about how to balance concerns about quality of life and treatment-related toxicity with the need for HIV treatment. But the BBC documentary and its source articles hardly provide that kind of thoughtful argument. Don't get sucked in.