By MARK GABRISH CONLAN with reply by CHRISTINE MAGGIORE

Reprinted from Zenger's Newsmagazine issue #135, January 2006
© 2006 by Mark Gabrish Conlan

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 last May of AIDS-related encephalitis and pneumonia.

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 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 group’s advisory board and a holistic pediatrician based in Colorado — who were unable to treat the infection or save Eliza Jane’s life.

According to Maggiore, her daughter’s final decline started when, on Dr. Incao’s 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 didn’t know what to say except, ‘E. J., I love you.’”

When the coroner’s 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 Well’s medical advisory board and an Iraqi émigré with a Ph.D. in toxicology. Al-Bayati reviewed the coroner’s 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. 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.”

Maggiore’s 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 she’d 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 hadn’t 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 didn’t 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.

Times Attacks, Maggiore Fights Back

Until last April, Maggiore’s strategy for her own and her children’s 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 Jane’s death, Maggiore withdrew from most of her activism, too shaken emotionally to continue. But the controversy over Eliza Jane’s 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 group’s Web site, aliveandwell.org. “Medical records show that my daughter did not exhibit symptoms consistent with the coroner’s 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 coroner’s office was originally sympathetic towards her and her loss, but that abruptly changed after Eliza Jane’s memorial service on May 29. She’s convinced that the coroner’s 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 daughter’s pediatricians received a call from the coroner’s 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 coroner’s 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 Jane’s 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-Bayati’s 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-Bayati’s 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 they’d 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]. That’s 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 Maggiore’s 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 wasn’t 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 didn’t reveal her own HIV antibody status to the emergency-room doctors who made the futile last-ditch effort to save Eliza Jane’s life because “I wanted an unprejudiced evaluation of my daughter.”

Maggiore didn’t say it in so many words, but just about anyone who’s ever been involved in AIDS activism from an alternative perspective — especially those who’ve tested “HIV-positive” themselves — knows what she’s talking about. Alive and Well and similar groups in other cities constantly receive complaints from people labeled “HIV-positive” who can’t get doctors to focus on what’s really wrong with them because, once you’re tagged as “HIV-positive,” all too often everything that goes wrong with your health from then on is attributed to HIV. What’s 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.

To Test, or Not to Test?

Nonetheless, few aspects of Maggiore’s 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 have Eliza Jane tested for HIV antibodies. “The more we looked into it, it was, ‘Why wouldn’t they tell us this?’,” Captain Ed Winter of the L. A. County Coroner’s 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 (“There’s 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 won’t 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 coroner’s 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 Eliza’s 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 Jane’s 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. It’s 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. Ribe’s 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.”
posted by mgconlan at 1:59 PM 0 comments

Christine Maggiore’s Response to the Above Article
Published in the March 2006 edition of Zenger's Newsmagazine

Thank you for publishing your insightful analysis of the ABC PrimeTime segment on the tragic death of my daughter Eliza Jane[Zenger’s #125, January 2006]. . I noticed one small error of substantial significance in an otherwise superb article and would appreciate an opportunity to correct that misunderstanding and clarify a few related points.

Under the subhead “To Test, or Not to Test,” Zenger’s reports that I “irritated mainstream [AIDS] representatives” by “refus[ing] to disclose [my] HIV status to Eliza Jane's treating physicians or to have Eliza Jane tested.” While it is true that my informed decisions about testing and treatment have angered faithful followers of mainstream AIDS dogma, the notion that I withheld information about my testing history from any of our family’s doctors is false. This erroneous idea has apparently taken hold at high levels and is one of many baseless assertions that drive the ongoing police investigation into my daughter’s death.

In reality, all three of Eliza Jane’s pediatricians have known my HIV testing status since our initial visit, and two have read my book challenging conventional thinking on AIDS. The notion that I opposed orders to have Eliza Jane tested is also false — none of our pediatricians ever recommended that E.J. or her brother Charlie take a so-called HIV test. I attribute their admirable position on this matter to a long-standing practice of respect for a parent’s right to informed decisions and to our family’s long-standing record of excellent health.

Further on in the same paragraph, Zenger’s quotes Captain Ed Winter of the Coroner’s Department of Investigations, who suggests I should be charged with negligence for failing to volunteer my HIV status to his office. From what I understand, the duty of a coroner is to determine a cause and manner of death based on a thorough and unprejudiced examination of all physical evidence pertaining to the deceased. Since my HIV status does not affect the physical evidence and should not influence the interpretation of medical data in the case, the only negligence I see is on the part of the coroner’s office in determining a cause of death that defies their own findings at autopsy and disregards the established medical literature. Pneumonia is defined as “inflammation of the lung caused by disease” and their autopsy clearly states there was “no inflammation” of my daughter?s lungs. Their report also fails to explain the manner of my daughter's death and contains no evidence that she ever lacked oxygen.

With regard to remarks Zenger’s cites from coroner James K Ribe’s interview with ABC News, although correctly quoted, Ribe’s sensational statement about finding “the AIDS virus in the middle of Eliza’s brain” is false and without scientific merit. The slide Ribe shared with television viewers showed a tissue sample that responded positively to testing for p24, a non-specific protein associated with HIV that in no way equates with or substitutes for the finding of actual virus. Ribe’s claim that Eliza Jane had “a viral [encephalitis] infection of the brain” is also without medical basis, defying all medical records, including Ribe’s own. A CAT scan done at the emergency room shows no swelling or damage to her brain, and fluid from a spinal tap performed that night was clear. More to the point, Ribe’s autopsy report confirms there was no damage to or swelling of the brain, and notes that even after months of attempts, no microbe ever grew in her spinal fluid culture.

The most ridiculous remarks by Ribe went unaired, however, after ABC News agreed he contradicted medical and hospital records as well as his own autopsy report. Included among Ribe’s more bizarre statements: Eliza Jane’s lungs were “full of herpes lesions” when no lesions of any kind were found in her lungs at autopsy or in microscopic examination of lung tissue; that my daughter had shrunk into the third percentile for growth when all records, including the autopsy report, refute that notion; that she was severely immune compromised when medical records show no clinical symptoms of immune suppression and Ribe’s report shows a higher than normal lymphocyte count; and that due to lack of immunity, her body stopped growing while her head increased in size, deforming her into some kind of midget monster. Aside from having no medical evidence to substantiate this cruel and outrageous portrayal of Eliza Jane, the photos of my daughter posted at www.ejlovetour.com tell another story.

At this point readers may ask what part truth plays in autopsy conclusions, police investigations, and the justice system. Some unsettling answers are a mere Google search away where less-than-major media cover other cases involving the sudden death of children. These underreported stories reveal a systemic willingness to stray outside the bounds of medical evidence and underplay the devastating consequences to families who’ve suffered unfathomable loss upon unfathomable loss. A barely mentioned news item from this February 9 notes that a U.S. court of appeals overturned the conviction of a grandmother charged in the death of her infant grandson by SBS, that other vacant syndrome, “Shaken Baby.” In Smith v. Mitchell, prosecutors armed with dubious evidence supplied by the LA County Coroner insisted that shaking caused the child’s death “even though the physical examination of the brain during and after autopsy could not demonstrate that fact.” Citing a lack of sufficient medical evidence and miscarriage of justice, the court finally threw out the charges. We are left to imagine — if we dare — the pain and suffering endured by this family and wonder what, if any, punishment awaits the real perpetrators of injustice.

Mirroring many aspects of my own case is that of Sally Clark, a U.K. mother recently exonerated after serving three years of a life sentence for the alleged murder of her toddler son. Based on the prejudicial assumption that Clark caused the child’s sudden death, the coroner reported evidence subsequently found to be nonexistent, misinterpreted data to favor his predetermined conclusions, and withheld laboratory results showing the boy died of septicemia, not smothering as he had accused. To anyone following my story, the Clark case may sound familiar: Based on a prejudicial assumption (my lack of adherence to AIDS dogma allegedly caused my daughter’s sudden death), the coroner cites a fatal case of pneumonia (despite missing evidence of inflammation), misinterprets data to favor his conclusion (the reduced size of Eliza Jane’s thymus gland supposedly indicates AIDS while a smaller thymus in another deceased child in another Ribe autopsy goes unreported as a sign of anything), and withholds laboratory results during the police investigation (the coroner's office has yet to provide our attorney with information on what HIV-related diagnostics were performed on Eliza Jane post mortem).

Will I end up in the slammer like grieving mom Sally Clark? Or spend years seeking justice like grandma Smith? In a world where newspapers, news shows and coroners act with so little regard for facts, it’s hard to say. But as long as truth still rules the day at publications like Zenger’s, I may stand a chance of surviving the unfathomable accusations and the unfathomable loss.

Thank you for pointing out the many flaws and fallacies in the mainstream take on my family’s tragedy and for allowing me to share further insights on the topic with Zenger’s readers.

Christine Maggiore
Los Angeles

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