Recap of Prime Time Segment on Eliza Jane
Mark Gabrish Conlan
Zengers News Magazine
Alternative AIDS activist Christine Maggiore, founder of the Alive and Well AIDS organization and author of What If Everything You Thought You Knew About AIDS Was Wrong?, appeared on the ABC-TV Primetime news show aired December 8 to challenge the official finding of the Los Angeles county coroner that her 3 1/2-year old daughter, Eliza Jane Scovill, died in May 2005 of AIDS-related encephalitis and pneumonia. Maggiore not only has the veiled threat of a criminal prosecution for neglect hanging over her, shes been the subject of a series of highly critical articles in the Los Angeles Times, the first of which, published September 24 nine days after the coroners report was released bore a headline that summed up the papers view of the case: A Mothers Denial, a Daughters Death.
Maggiore, whose career as an AIDS activist began when she tested HIV-positive in 1992, formed Alive and Well in 1995 after encountering the alternative scientific view of AIDS which regards it as a long-term breakdown of the immune system caused by various lifestyle and toxic factors, not an infectious disease caused by HIV or any other virus and deciding it better explained her own experience than the mainstream view. She met her husband, filmmaker Robin Scovill, in 1996 and they subsequently had two children. One, Charlie, is now a healthy, happy, exuberant eight-year-old boy. The other, Eliza Jane, also seemed perfectly healthy until she contracted an ear infection in April of this year. She struggled with the infection for three weeks, and Maggiore saw three pediatricians her regular one, Dr. Paul Fleiss; another California-based doctor, Jay Gordon; and Philip Incao, a member of her groups advisory board and a holistic pediatrician based in Colorado who were unable to treat the infection or save Eliza Janes life.
According to Maggiore, her daughters final decline started when, on Dr. Incaos recommendation, she gave Eliza Jane amoxicillin, an antibiotic commonly used in children. After just the third dose, Maggiore told Primetime host Chris Cuomo, her complexion went from rosy to kind of ashen, and she felt cold. And she was agitated. She was looking around the room nervously. I would say, Eliza Jane? Eliza Jane? And she would look at me and hold my eyes for a moment, and I didnt know what to say except, E. J., I love you.
When the coroners autopsy report was released September 15, Maggiore demanded a copy of it so she could have it reviewed by Mohammed Ali Al-Bayati, another member of Alive and Wells medical advisory board and an Iraqi émigré with a Ph.D. in toxicology. Al-Bayati reviewed the coroners report and wrote a report of his own, dated October 25, that claimed Eliza Jane died not from anything related to AIDS or HIV, but from an allergic reaction to the amoxicillin [a penicillin-based antibiotic]. Al-Bayati was shown on the Primetime show confirming that statement, but his total appearance was a two-second sound bite and he was not questioned about why he came to his conclusion that amoxicillin, not AIDS, killed Eliza Jane.
In what was perhaps the most moving portion of the Primetime show, Maggiore told Cuomo that she could not directly answer the question of what she thought killed her daughter, but said through tears, I believe that the unfortunate irony in this situation is that the one time we were asked to, and we complied, with mainstream medicine, we inadvertently gave our daughter something that took her life.
Maggiores disillusionment with mainstream medicine began even before her HIV-positive diagnosis in 1992. Before that, doctors had mistakenly put her on heavy doses of thyroid medication until, just before her HIV antibody test result, one doctor realized she was being overdosed with these drugs and took her off of them. Maggiore later said that just when she was being told her positive HIV antibody test meant she was infected with an invariably fatal virus and she was just going to get sicker and die young, she was the healthiest shed been in years because she was off the thyroid drugs and that was the first indication she had that the prophesy of her impending doom from the so-called AIDS virus might not be accurate.
Further uncertainties arose when Maggiore took a second HIV antibody test, which came out negative. Over the next two years she took a number of tests, whose results ranged all over the map: positive, negative and indeterminate or seroequivocal, an in-between category her orientation as a mainstream speaker for AIDS Project Los Angeles hadnt prepared her for at all. After contacting UC Berkeley virologist Peter Duesberg, Ph.D., she was exposed to the alternative view of AIDS and decided it made more sense than the mainstream one she was peddling as a volunteer. Before she adopted the alternative view, Maggiore had been a founding board member of a group called Women at Risk, made up of HIV-positive women; over the next five years, she watched as 11 of the original 14 Women at Risk board members who took anti-HIV medications died, while Maggiore and the two others who didnt use the drugs lived.
By the time she met Robin Scovill and became pregnant with Charlie, Maggiore was determined to follow her own instincts and the advice of alternative researchers rather than the medical mainstream. She gave birth to both her children at home with the assistance of a nurse-midwife rather than go through a hospital, where she would have been forced to take the cell-killing anti-HIV drug AZT while still pregnant and to administer it to her children after they were born. She breast-fed both Charlie and Eliza Jane despite the warnings of mainstream doctors and researchers that she could be transmitting HIV to her babies in her breast milk. Maggiore also refused to have her children vaccinated, claiming that the vaccines would do more harm than good. Most galling for the AIDS establishment, Maggiore not only refused to have either child tested for HIV antibodies but set up a spinoff of her organization, Mothers Opposed to Mandatory Medicine (MOMM), to counsel other HIV-positive mothers and pregnant women on how to avoid mandatory testing and AZT treatments for themselves and their children.
Until last April, Maggiores strategy for her own and her childrens health paid off magnificently. Indeed, in public appearances she would offer herself and her healthy kids as evidence against the mainstream view of AIDS and especially the death sentence it pronounced on all those who tested HIV-positive and refused anti-HIV treatments. After Eliza Janes death, Maggiore withdrew from most of her activism, too shaken emotionally to continue. But the controversy over Eliza Janes autopsy and in particular the highly critical article the Los Angeles Times published on the front page of its September 24 issue brought back her fighting spirit and made her determined to defend not only her own actions as a mother but her underlying rejection of the HIV/AIDS model.
After the Times article ran, Maggiore wrote several responses, one in the form of a letter to the editor which the Times refused to publish and another, considerably longer one that she published on her groups Web site, aliveandwell.org. Medical records show that my daughter did not exhibit symptoms consistent with the coroners determination of pneumonia, AIDS-related or otherwise, Maggiore wrote. The three pediatricians who examined Eliza Jane in the days before her death all noted clear lungs. At a doctor visit on May 14, the day before she died, no cough or respiratory congestion was evident. When my daughter collapsed at home the next evening following her fourth dose of antibiotic, she did not have the blue lips or fingertips suggestive of life-threatening pneumonia.
Maggiore said the coroners office was originally sympathetic towards her and her loss, but that abruptly changed after Eliza Janes memorial service on May 29. Shes convinced that the coroners office took a tougher attitude towards her once they learned of her HIV-positive status, her rejection of the HIV-AIDS model and her authorship of a book challenging the conventional wisdom about AIDS. On June 28, one of my daughters pediatricians received a call from the coroners office demanding to know if he was aware of my book and HIV status, Maggiore wrote. Before hanging up, the doctor was threatened with a subpoena.
The coroners dramatic change in outlook on the case, and the additional three months it took them to prepare the official autopsy report, led Maggiore to suspect that the official report attributing Eliza Janes death to AIDS-related pneumonia was a diagnosis by association, unsupported by blood tests, tissue samples or any other hard evidence. But, on the advice of her attorneys, she made no more public statements until Al-Bayatis report was presented to her. According to a statement she posted to the aliveandwell.org Web site December 7, the day before the Primetime segment aired, Maggiore shopped Al-Bayatis report around to other pathologists for review for nearly a month after she got it. Then she gave it to David Crowe of the Alberta Reappraising AIDS Society, a Canadian alternative AIDS group similar to her own, with instructions to post it on the Internet along with an invitation for professional comment.
Maggiore had turned down previous requests from the media, but when ABC came calling in late November she accepted. She said she and her husband had decided to share our side of the story, knowing it will be balanced by opposing views, but with the hope that some truth will shine through. Maggiore went with ABC because she felt they were the mainstream media outlet most likely to give her views a fair hearing as they had, more or less, on a previous segment theyd done with her on the 20/20 program aired August 24, 2001 and the person who was going to produce the report was someone my husband and I genuinely respect.
The Primetime report that finally aired revolved largely around the issue of whether Maggiore had been negligent by refusing to have her daughter given the HIV antibody test and not telling the pediatricians about her own HIV status. One of the pediatricians Maggiore called in, Dr. Jay Gordon, told Primetime, If I had the knowledge that I have now, I would have asked the parents to have the child tested for HIV [antibodies]. Thats what I would have done. (Oddly, the original Los Angeles Times article from September 24 said, According to interviews and records, Gordon and [Dr. Paul] Fleiss have long known Maggiores HIV [antibody] status and that she breast-fed her children.)
Though Maggiore, like most other alternative AIDS activists, regards the HIV antibody test as unreliable her book includes a list (originally researched by another L.A.-based activist, Christine Johnson) of 64 potential causes for a false-positive result on the test, including such common infections as hepatitis, herpes, malaria and flu that wasnt the reason for not having Eliza Jane tested she gave to Primetime. Why would I risk the stigma, the label, the toxic drugs? she said. She also said she didnt reveal her own HIV antibody status to the emergency-room doctors who made the futile last-ditch effort to save Eliza Janes life because I wanted an unprejudiced evaluation of my daughter.
Maggiore didnt say it in so many words, but just about anyone whos ever been involved in AIDS activism from an alternative perspective especially those whove tested HIV-positive themselves knows what shes talking about. Alive and Well and similar groups in other cities constantly receive complaints from people labeled HIV-positive who cant get doctors to focus on whats really wrong with them because, once youre tagged as HIV-positive, all too often everything that goes wrong with your health from then on is attributed to HIV. Whats more, people in that position are often subjected to massive pressure from doctors and other health professionals to go on anti-HIV drugs immediately, whatever symptoms they presented with in the first place and whether or not they are too ill to tolerate these often highly toxic medications.
Nonetheless, few aspects of Maggiores behavior irritated the mainstream representatives on the program or the ones (some of them the same people) interviewed by the Los Angeles Times both for the initial article and a follow-up they published December 9, one day after the Primetime segment aired, than her refusal to disclose her HIV antibody status to Eliza Janes treating physicians or to have Eliza Jane tested. The more we looked into it, it was, Why wouldnt they tell us this?, Captain Ed Winter of the L. A. County Coroners Department of Investigations, told Primetime. Do I have an opinion about whether or not it was neglect? I think it possibly could be.
Nancy Dubler, a bioethicist from Montefiore Medical Center in New York, who was first contacted by the Los Angeles Times and was relatively conciliatory in her quotes for the September 24 article (Theres no easy answer to the question of whether HIV antibody-positive mothers have the right to refuse testing and treatment for their kids, she said then), took a much harder line on Primetime. She can take risks with her life, depending on what her values are, Dubler said. But for her to impose her values on a child is impermissible. Asked what should happen when an HIV antibody-positive mother wont test her child, Dubler told Primetime, You have a few choices. One, you can take the child away from the mom. Two, you can take the child away from the mom. And three, you can take the child away from the mom.
In another segment of Primetime, Maggiore and her husband were shown a videotape of the autopsy slides of Eliza Jane which contained a soundtrack commentary by Dr. James K. Ribe, senior deputy medical examiner at the Los Angeles County coroners office. Showing a series of textured blotches no one but an expert would likely be able to interpret, Dr. Ribe said, That is the AIDS virus in the middle of Elizas brain a pretty astonishing comment, given how elusive HIV has been to attempts to photograph it by electron microscopy, the only way you can see a virus and it is HIV encephalitis, which is a viral infection of the brain. And that goes a long way to explain why Eliza was so sick, why she was so thin and wan when she finally came to autopsy.
Showing another set of blotches, this time representing Eliza Janes lungs, Dr. Ribe said, Those little black teacup-shaped things are an organism called Pneumocystis carinii, and that is seen only in patients who are severely immunodeficient, such as leukemia patients and AIDS patients. Their breathing becomes rapid and shallow, and sooner or later they run out of oxygen and collapse. Its very treatable, and certainly Eliza, if she had been rescued early enough, probably days or a couple of weeks before, she would easily have been treatable and would easily have survived.
This is absurd, Maggiore said on camera to Primetime after watching Dr. Ribes tape. To develop this type of pneumonia, you have to be immune-compromised. She did not have symptoms of encephalitis. She sat at the kitchen table on Saturday afternoon with the pediatrician and had a popsicle. Lucid, clear, healthy, except for an ear infection. I see nothing there that convinces me.