For those of you who might not brave the comments threads on any HIV post, you may have missed this tidbit of information. I’ve written about “investigative journalist” Liam Scheff previously; he’s an HIV “dissident” and author of a story from a few years back titled “The House that AIDS Built”. In this, he claimed that HIV+ children had been removed from their parents’ homes and force-fed “toxic” drugs to treat their condition (which of course, he claims is based on “inaccurate” HIV testing in the first place):
The drugs being given to the children are toxic – they’re known to cause genetic mutation, organ failure, bone marrow death, bodily deformations, brain damage and fatal skin disorders. If the children refuse the drugs, they’re held down and have them force fed. If the children continue to resist, they’re taken to Columbia Presbyterian hospital where a surgeon puts a plastic tube through their abdominal wall into their stomachs. From then on, the drugs are injected directly into their intestines.
This story was picked up as the basis for the 2004 documentary “Guinea Pig Kids,” an independent movie which was aired by the BBC–a move they now are apologizing for after an intense investigation into the claims made by the movie, and the people involved in creating it. More after the jump…
From the Guardian article on the debacle:
According to a source, the documentary – which was made by independent film-maker Jamie Doran – has caused considerable anguish within the BBC, which is still reeling from more recent fakery allegations, because of fears it deceived viewers by “playing fast and loose with the facts”.
…following an investigation led by the BBC’s head of editorial complaints Fraser Steel, the corporation has upheld complaints about several key parts of the film and a related article on the BBC website.
These included claims that the HIV medicines given to the children were “futile” and “dangerous” and that children were taken from their families because they resisted the “experimental” drugs.
In its adjudication, the BBC also said that the film-makers falsely tried to “create an association between the [clinical] trials and a loss of parental rights” while it also acknowledged that the film was biased towards the views of HIV “denialists”
…A film written by, produced by, and featuring interviews with HIV denialists, who never pause to mention that their views are outside of the mainstream medical establishment (to put it mildly).
The false allegations about sinister medical experiments on foster children were a Trojan Horse cynically constructed to take advantage of those real concerns in order to spread deadly denialist lies about HIV in the communities most devastated by AIDS. These allegations about ICC have become something of an urban legend, untrue but widely believed, mainly because people trusted the BBC. The fact is that ICC and the more than 30 other agencies in New York that took part in the trials used the clinical trials framework to make life-saving medications, already approved for adults, available to children with HIV who would otherwise have died.
Again, scientists are of course outraged because Scheff et al have portrayed a clinical trial, aimed at better understanding drug dosages in children and providing them access to medicine, as something akin to a medieval torture device, and those who helped these kids are labeled “fascists” and “nazis” by Scheff. (Indeed, in a post on his blog on the topic, one of the categories it falls under is “eugenics.”) But worse than bastardizing the science and painting doctors and nurses as mad scientists is the misinformation the documentary has caused in at-risk circles, as Jeanne Bergman notes in her piece describing the background of the documentary:
The attacks on Incarnation Children’s Center began with a sensationalist stew of lies, partial truths and innuendo cooked up by an AIDS denialist and free-lance writer named Liam Scheff and circulated on the Internet in early 2004. The New York Post picked up the story in March of that year, eliciting a spasm of misinformed grandstanding by a couple of City Council members. … Regrettably, the HIV denialists driving this hoax have since been joined by African-American activists affiliated with small groups like the December 12th Movement, whose rage is directed primarily at ACS. They started organizing protests outside ICC, thus outing the residents as children with AIDS and characterizing their home as a “slaughterhouse.”
She notes that in the 1980s, kids in foster care (or those not living with their parents for a variety of reasons) were not allowed to participate in clinical trials. By 1992, this represented about half of the HIV+ kids in New York City–until Incarnation Children’s Center and other advocates intervened. Kids could be enrolled in the trials and receive antiretrovirals; however, clinical trials ended at ICC in 2002. Why? Horror stories of children dying? Nope–because the trials had been completed, and the medications had been approved for use in pediatric populations. Because they are now standard of care, foster parents can indeed have their foster children removed from their custody if they refuse to treat–and this isn’t unique to New York or the ICC. When one agrees to take on the responsibility for a child, that includes providing them with proper medical care.
Finally, I suppose it won’t be surprising to many regular readers to find out that Christine Maggiore played a role in this tale, getting the ball rolling on the story that eventually led to “Guinea Pig Kids.” According to Bergman, she introduced Scheff to the guardian of two children at ICC (I assume, Mona Newberg, who Scheff interviewed for “The House that AIDS Built”).
Coverage of this story in The New York Times in 2005, and now this retraction and apology by the BBC won’t serve to undo all the damage done, but it at least gives scientists and advocates places to point to that re-affirm the inaccuracies in this so-called journalism. The BBC did the right thing by making its statement about the film; too bad it’s taken them 3 years to get to that point.