By Jared Chausow
By Katie Toth
By Elizabeth Flock
By Albert Samaha
By Anna Merlan
By Jon Campbell
By Jon Campbell
By Albert Samaha
The doubters resent the label they've been saddled with—"AIDS denialists"—and complain that the term is intended to equate them with the lunatic fringe that denies the existence of the Holocaust. But denial certainly seems to be a theme in the story of one of Scheff's most well-known colleagues, the person who actually tipped him off to the situation at Incarnation.
We're talking about Christine Maggiore, perhaps the country's most famous AIDS denialist, who, after being diagnosed as HIV-positive in 1992, rejected the theory that it causes AIDS.
She's dead now, having died of AIDS-related illnesses this past December after refusing to take AIDS medicines and denying to the end that she had HIV or that it could develop into AIDS.
That was her choice, and, naturally, her small following continues to believe that her fatal pneumonia was not caused by AIDS and that her death is not the best evidence that she was simply wrong in her beliefs.
But, more tragically, Maggiore took someone with her. In 2002, she gave birth to a daughter. During her pregnancy, Maggiore refused to take drugs that could reduce the risk of passing HIV to her child. She also breast-fed the girl, which is not recommended for women who are HIV-positive. Maggiore refused to have the child tested for HIV. Three years later, the girl caught a cold that quickly became serious, resulting in her death. An autopsy by the Los Angeles County Coroner's Office concluded that the girl had developed pneumonia as a result of advanced AIDS.
Maggiore denied vehemently that she had allowed her personal politics to kill her child. She turned to an ally, a Ph.D. whose research primarily involved animals, who ginned up a study claiming that the girl had instead died of a reaction to amoxacillin.
But in 2003, years before the death of her child and before her AIDS denialism resulted in her own demise, Maggiore contacted a man she knew, Liam Scheff, with a tip about a story about AIDS drug testing in an uptown Manhattan foster home.
Scheff went to the foster home and concluded that children were being seized from their parents so they could be pumped with experimental drugs that were killing some of them. (Neither allegation, it turned out, was substantiated.) His article was also shot through with denialist language, such as that AIDS tests are "highly inaccurate."
Scheff shopped around his story, "The House That AIDS Built," to various publications, including the Voice, which rejected it. The story was passed around on several websites before it exploded. The New York Post ran its own version of the story. The BBC produced a documentary based on it.
Scheff had found parents or guardians very willing to be interviewed. In the early days of the epidemic, when medicines had serious side effects and the disease itself progressed slowly, some parents felt it was the medicines themselves making the children sick. Many of these people were willing to believe that children had been taken away so that they could be put in trials. (The state is legally allowed to remove children from homes on charges of medical neglect. But there's no evidence children were removed so that drug trials could be conducted.) Meanwhile, relatives and advocates couldn't get answers from the city's child welfare agency. The agency couldn't even tell the public how many children had been in trials.
An angry audience packed a City Council hearing in May 2005. When the new commissioner of the city's Administration for Child Services, John Mattingly, testified, he was called a Nazi doctor and accused of committing genocide and crimes against humanity.
The story of pediatric AIDS in New York was actually a success story: The mother-to-child transmission rate had been brought down by 90 percent. But the controversy threatened to undermine the faith of many in the medical establishment.
Over time, the most heated rhetoric subsided as the agenda of Maggiore and Scheff became better known. The Times, in its 2005 story, quoted physicians who were adamant that they had done everything possible to follow ethical guidelines and care for the children, beginning in a desperate time when HIV was a death sentence and there were no approved medicines for children. (AZT, the first AIDS medicine, was approved for children in 1990.) The BBC, after being shown evidence that the facts had been distorted, retracted much of what was in its documentary.
And today, the Times sounds satisfied that the controversy has been settled with an independent study.
Except that it's not that simple. Even disregarding the unscientific fevered dreams of Maggiore and Scheff, much of what the children experienced at the Incarnation Children's Center was horrific, and there's little doubt that much of the testing work and record-keeping in the various sites around the city that conducted clinical trials were questionable. The Voice wanted to know: While keeping at bay the distracting background noise from the denialists, is there still a story to be told about what went wrong—and what went right—at testing sites like Incarnation?
Unlike the Times, we decided to start with someone who actually lived through it.