As we’ve seen in a recent post, turning to “alternative” medicine and as a result, failing to receive timely and medically sound treatment, can lead to devastating results. The circumstances surrounding the death of 3.5 -year-old Eliza Jane Scovill constitute a similar cautionary tale: how a mother’s denial of her potentially deadly, transmissible condition caused her beloved daughter to pay the ultimate price.
Christine Maggiore, a former clothing import/export executive living in California, tested positive for HIV during a routine blood test in 1992. Initially, she embraced her diagnosis and became a volunteer for AIDS charities, lecturing about the risk factors for contracting AIDS and presenting herself as the whitebread, heterosexual face of AIDS. However, following her interaction with AIDS denialist Prof. Peter Duesberg and after further tests proved inconsistent for HIV, she came to believe that HIV does not cause AIDS. She then founded an organization called Alive and Well, devoted to questioning the HIV/AIDS connection and encouraging people to forgo conventional treatments for HIV/AIDS, replacing them with “alternative” therapies (have a good look at this organization’s advisory board members; we’re about to meet a few of them soon). She also wrote a book called What If Everything You Thought You Knew About AIDS Was Wrong? disseminating these ideas. Her continuing good health despite taking no antiretroviral treatment, and that of her partner, Robin Scovill, and her son Charlie (b. 1997), she flaunted as testimony to her ideas. She remains apparently healthy to this day*.
In 2001, aged 44, Maggiore became pregnant with her daughter Eliza Jane, called EJ for short. She refused to take antiretroviral therapy to prevent transmission of HIV to her baby, and in fact, appeared with her family on the September/October cover of Mothering Magazine (see below, sorry about the small size) to highlight an article in the issue about HIV-positive women “birthing outside the system”. (Peggy O’Mara, Mothering‘s editor-in-chief, is a long-time AIDS denialist and on the advisory board of Maggiore’s organization).
EJ was born on December 3rd of that year. Wishing to avoid the authorities and being no stranger to woo-flirting, Maggiore chose to give birth to her at home, did not vaccinate her, and breastfed, though HIV has been shown to be transmissible through breastmilk and HIV-positive women in the developed world are advised by the WHO not to breastfeed. She also refused to have EJ tested to see if she’d contracted the virus.
EJ continued to develop normally (if a bit small for her age) until she was 3.5 years old. The family’s regular pediatrician, was Dr. Paul Fleiss, father of “Hollywood Madam” Heidi and, according to the excellent LA Times article on the subject, “could be “convinced either way” on whether HIV causes AIDS”. However he, too, is an advisory board member of Alive and Well. Fleiss knew of Maggiore’s HIV(+) status, but declined to register this in EJ’s medical file and went along with Maggiore’s decision not to test her for the virus. It is not clear whether Fleiss actually asked Maggiore to test her daughter, as he did not document this request or any refusal on her part.
Another pediatrician who knew the family history and also had examined the girl in the past was our acquaintance from my previous post, Dr. Jay Gordon. He, too, had never demanded EJ be tested for HIV.
When EJ showed up with her mother in Fleiss’ office on April 30, 2005, complaining of a runny nose, the doctor covering for Fleiss had no way of knowing this very relevant fact in the little girl’s medical history, and found nothing amiss.
The LA Times piece describes the rest of the events leading to poor EJ’s untimely death:
Five days later, Maggiore sought a second opinion from Gordon. In an interview, Gordon said he suspected an ear infection but believed it could be resolved without antibiotics. In a follow-up call, he said, Eliza Jane’s parents told him she was getting better.
Maggiore then asked Denver physician Philip Incao, who was visiting Los Angeles for a lecture, to examine her, the mother told the coroner’s investigator. He found fluid in Eliza Jane’s right eardrum.
On May 14, Incao examined her again and prescribed amoxicillin, Maggiore told the coroner.
Incao is not licensed to practice medicine in California. (Incao is also an anti-vaccine, pro-woo doctor, and not surprisingly, also a member of the aforementioned advisory board~Estherar)
The next day, Eliza Jane vomited several times and her mother noticed she was pale. While Maggiore was on the phone with Incao, the little girl stopped breathing and “crumpled like a paper doll,” the mother told the coroner. She died early the next morning, at a Van Nuys hospital.
In September 2005, the results of the LA County Coroner’s Report came out. The findings showed conclusively that EJ had died of pneumonia caused by Pneumocysitis carinii – a pathogen which only attacks immunocompromised people, such as those with AIDS. Immunohistochemical stainings of the girl’s brain demonstrated the presence of a core protein of the AIDS virus, as well as changes in the white matter consistent with AIDS encephalitis.
Naturally, this did not sit well with Maggiore. She was convinced of a conspiracy against her, accusing the coroner and the pathologists working with him of prejudice as a result of their discovery of her HIV-positive status (of which she had neglected to inform both the hospital staff and the coroner’s office). So she commissioned another Alive and Well board member, Mohammed Ali al-Bayati (toxicologist and veterinary pathologist), to critique the autopsy report. His conclusion was, predictably, that EJ had not died of AIDS pneumonia: he claimed death resulted from an allergic reaction to the antibiotic, with a Parvovirus B19 infection as a possible contributory factor (this virus, most commonly the cause of the fairly innocuous fifth disease, can cause bone marrow suppression under certain rare circumstances).
It should go without saying the evidence of AIDS in the brain and the proliferation of an AIDS-related pathogen is pretty slam-dunk evidence of the cause of death, but Dr. Nick Bennett, a pediatrician and researcher, took the trouble to debunk al-Bayati’s ‘analysis’ in great detail, demonstrating the half-truths, omissions and flat-out lies al-Bayati resorted to in order to reach his tortured conclusion. Of course, the al-Bayati version was paraded as gospel truth by Maggiore and her fellow AIDS denialists, including Mothering Magazine‘s Peggy O’Mara (I was very gratified to find, however, that not all of her groupies at mothering.com accepted it. Credit where credit is due, folks!).
On December 8th, 2005, 5 days after what would have been EJ’s 4th birthday, Maggiore appeared on ABC’s Primetime Live. Though Maggiore had just claimed she would be convinced her daughter died of AIDS if she were presented with “evidence of fatal pneumonia”, her response was none other than expected of a denialist of her, um, caliber:
Despite seeing a tape of Ribe (the coroner) explaining his findings — showing HIV-related encephalitis in her brain and pneumocystis carinii pneumonia (PCP) in her lungs — Maggiore refused to believe her daughter died of AIDS.
Almost a year to the day after the story broke, the LA County’s District Attorney announced he would not press charges against the Scovill/Maggiore duo for gross negligence, as Maggiore had, in fact, solicited the advice of three doctors and followed their advice (I suspect the fact that Maggiore was 49 years old by then and unlikely to bear other children may have had something to do with it as well). The couple are as unrepentant and denialist as ever; here they are in an August 2007 interview on Canadian talk radio about Scovill’s 2004 movie, The Other Side of AIDS (the link is to a rather long audio clip; If you don’t want to hear it all, I’ll note that there is no mention whatsoever of EJ or her plight. The interviewer is disgustingly fawning,a ctually).
Dr. Jay Gordon, who admitted his mistake, was not prosecuted. However, Dr. Fleiss was placed on probation by the California Medical Board for nearly 3 years in late 2007 for failing to maintain adequate records of possible HIV status on EJ and another HIV-positive child. A copy of the decision can be accessed here.
Dr. Incao, the Denver pediatrician who also examined EJ before her death, was sanctioned by the Colorado medical board for practicing medicine on EJ without a California license, and also for not documenting his care of the child.
As I said, a tragic cautionary tale, one, I’m sad to say, from which the combined perpetrators and victims have learned exactly nothing. Let’s hope others do, however.
Some more useful resources to peruse on the subject:
HIV Denial in the Internet Era – by sciencebloggers Dr. Tara Smith and Dr. Steven Novella
Evidence that HIV causes AIDS from the NIH.
*Robin and Charlie Scovill have since been tested repeatedly and are HIV negative. Cases such as Christine’s – the ability to not develop AIDS despite long-standing HIV(+) status – have since been attributed to the luck of the genetic draw. Genes she apparently did not pass on to her daughter, regrettably.