Does a Mother's Denial = a Daughter's Death?
On September 24, the LA Times ran a story titled "A Mother's Denial, a Daughter's Death," which detailed a controversy surrounding the death this spring of the daughter of the prominent "AIDS dissident" Christine Maggiore. (AIDS dissidents question the link between HIV and AIDS, arguing that the former is not necessarily the cause--and certainly not the sole cause--of the latter.)
Despite its news format, the Times' story essentially argued that three-year-old child, Eliza Jane Scovill, not only died of "AIDS-related pneumonia" but that Maggiore acted negligently as a parent. She had not had the child tested for HIV, reported the Times, and various doctors had not been as conscientious as they should have been in treating the girl; the LAPD is investigating Maggiore and her husband for "possible child endangerment." However, some new information from the mother raises questions about the Times' account.
From the Times' story:
Mainstream AIDS organizations, medical experts and ethicists, long confounded and distressed by this small but outspoken dissident movement, say Eliza Jane's death crystallizes their fears. The dissenters' message, they say, is not just wrong, it's deadly.
"This was a preventable death," said Dr. James Oleske, a New Jersey physician who never examined Eliza Jane but has treated hundreds of HIV-positive children. "I can tell you without any doubt that, at the outset of her illness, if she was appropriately evaluated, she would have been appropriately treated. She would not have died.
"You can't write a more sad and tragic story," Oleske said.
Whole thing here.
Maggiore, who has been HIV positive since 1992, is the founder of Alive and Well, a dissident group. She famously has refused to take any sort of anti-HIV drugs; both her husband, Robin Scovill, and her other child (a 7-year-old boy) have consistently tested negative for HIV. The daughter's HIV status is apparently unknown. Maggiore never had her tested and the LA Times doesn't mention it (though one would assume it would be part of the coroner's special report, which was released on September 15 and was the newshook for the story).
At the science blog Dean's World, Maggiore has posted two letters. The first is a short letter to the Times (conforming to the paper's limit of 150 words); the second is a longer version. According to Maggiore, her daughter did not have pneumonia and an autopsy performed in May resulted in a finding of "no apparent cause of death." From one of the letters:
On her last doctor visit, Eliza-Jane had no cough or respiratory congestion. After collapsing the next day following antibiotic administration, ER doctors performed a series of chest Xrays that revealed nothing. After careful examination of her lungs during a May autopsy, the coroner found no apparent cause of death.
One month and no cause later, the coroner's office called her pediatrician demanding to know if he knew about my book and HIV status. Despite their discovery, it took three more months for the coroner to decide my daughter died of AIDS-pneumonia.
Is Eliza-Jane's a diagnosis by association? Unlike her father and brother, did she actually test HIV positive?…
More here. Given the way the Times' story is framed, you would have thought that'd be one of the first things the paper reported. Maggiore is apparently pursuing an independent pathology report, which should at least settle that very basic question. And, depending on the results, may create more interest in the debate over whether HIV causes AIDS.
Two recent books of interest on this general topic: When AIDS Began: San Francisco and the Making of an Epidemic, by Michelle Cochrane. It's a cultural studies examination of the very first cases of what became known as AIDS and is a fascinating account of how medicine and politics interact in the codification of new diseases. And Oncogenes, Aneuploidy, and AIDS: A Scientific Life and Times of Peter H. Duesberg, by Harvey Bialy. Bialy, founder of the journal Nature Biotechnology and a well-known researcher in his own right, is one of the leading AIDS dissidents and he has written a strange but interesting book about the cancer researcher Duesberg, whose research career pretty much flatlined after he began arguing that HIV doesn't cause AIDS. The interesting thing is that Duesberg's rep is making a comeback in cancer research.
Back in 1994, in an article cowritten by, among others, a Nobel Prize winning chemist (Kary Mullis) and an Intelligent Design-promoting law prof (Phillip Johnson), Reason asked "What Causes AIDS?" That story is online here; and voluminous responses to it are here.
