Los Angeles CityBeat
Jun 8 Thursday
THE MONSTER WITHIN
A year after the sudden death of Eliza Jane Scovill, the battle over the LA Coroner’s mystifying diagnosis has unleashed a heated battle between those who fear HIV and those who don’t. It’s getting very ugly. For “treatment activists,” it’s worth stooping to criminal harassment, and psychic torture to STOP Christine Maggiore from talking about what she thinks killed her daughter.
By Celia Farber
It was in the early spring of 2005 when Christine Maggiore and her two children, Eliza Jane, 3, and Charlie, 8, scored a tiny victory against loss.
A bee got caught on the windshield of their car as they drove Charlie to school. “EJ misheard something I said about nectar and thought the bee’s name was Hector,” Maggiore recalls.
Christine slowed the car down and drove the rest of the ride at 20 miles per hour, while the three of them, as she recalls it, “all shouted at Hector to hang on.”
“Charlie’s task was to report changes in stop lights to me so I could concentrate on Hector, while EJ was in charge of keeping up Hector’s spirits.”
They were late for school, but the bee named Hector was still alive when they got there 40 minutes later. The children watched attentively as Christine delivered him safely onto a lavender plant.
No such shielding spirits, providence, or mercy came their way on the terrible night of May 15. EJ had developed a runny nose and cough two weeks earlier, which resolved, but eventually developed into an ear infection. Christine, by all accounts a very protective mother, took EJ to a total of three doctors, all of whom said she had nothing serious, that her lungs sounded clear, and that Christine and her husband Robin Scovill should wait and watch, and place her on an antibiotic only if the ear infection worsened. A third doctor, a personal friend of the family who made a house call—was concerned about redness in EJ’s ears and prescribed an antibiotic called Amoxycillin, at 400 milligrams twice a day. After the second dose, on May 15, EJ vomited several times. After the third dose, by the next evening, she became agitated, pale, and cold to the touch. Robin called the doctor who had prescribed the antibiotic and while he was on the phone with him, Christine started screaming from the other room: “She stopped breathing!!”
Robin ran to perform mouth-to-mouth resuscitation, while Christine, sobbing, called 911. Paramedics arrived and found EJ pulseless; they rushed her by ambulance to Valley Presbyterian Hospital, where she was pronounced dead after several hours of attempts to revive her. The EMT report stated that she had died of cardiac arrest. The attending physician that filled out a cause of death form stating that, in his opinion, “this death was caused by sepsis.”
When word started to trickle out that Christine Maggiore’s daughter had died, it carried a very loaded cargo even beyond the universal sadness no parent wants to fathom. For years she had been a public and well-known campaigner for the most agonized polemic in all of contemporary medicine—the fight about whether HIV “causes” AIDS. In recent years, the 49-year-old Maggiore—HIV positive and healthy for 14years—had relaxed her identity as a global warrior who fought the psychic death sentence attached to HIV. For years, hers had been a fairly benign message of positivism that her many detractors would spitefully call “AIDS denialism.” But at the time of EJ’s death she was enjoying being a stay-at-home mother who doted on her kids, raising them in a gentle, counter-cultural zone shared by a community that favored organic diets, limited antibiotics, and no vaccinations. Having first hand experience with the oddities and uncertainties of the HIV test, she quite naturally never had them tested for HIV. Nor did Eliza Jane’s two pediatricians of record—Dr. Paul Fleiss and Dr. Jay Gordon– ever request of the parents that they have EJ (or Charlie) tested.
The question of what killed little Eliza Jane has pitted those who question HIV’s role in AIDS against those who are certain it is uniformly deadly, and turned the “debate” into an all-out war. The evidence at the heart of the war is a Rorschach blot for everything that remains dizzyingly unresolved about what AIDS is and is not.
Four months after Eliza Jane died, after an initial autopsy finding no apparent cause of death, the couple got a call from a reporter for the Los Angeles Times, Dan Costello, who said he was running a story on the coroner’s new assessment that EJ had died of AIDS—specifically, a kind of pneumonia called PCP. The L.A. Times had somehow been tipped off to this new result before the report was even completed. When Christine returned Costello’s call, and asked that they hold the story until there was time for them to even receive and digest the autopsy report, he told her he was under “tremendous pressure” to run with the story two days later.
“From whom?” she asked.
“I can’t say,” Costello answered.
“Is it the coroner’s office?” Maggiore asked.
“No,” he answered.
(Costello did not respond to an interview request. His cowriter Charles Ornstein said that their story would have to “stand on its own.”)
On September 12, 2005, the Times ran a cover story by Costello and Ornstein accusing Maggiore, in so many words, of murder. Titled, “A Mother’s Denial, A Daughter’s Death,” it was a slam-dunk indictment that assumed the revised coroner’s report was accurate, and that EJ had died of AIDS-related pneumonia—which could have been prevented if her mother had had her tested, and medicated with AIDS drugs. Pedicatricians who never laid eyes on EJ were quoted telling readers what she died of, and how they themselves could have saved her with their own HIV vigilance, and treatment strategies. (Optional)
The L.A. Times refused to publish a letter from Maggiore in which she spelled out the facts that contradicted the claims made about her daughter’s autopsy findings in the newspaper, citing a policy not to “publish letters that dispute known facts.”. It was around this time that I began to speak to Christine Maggiore on the phone and take notes on her story, which often left me speechless. I had been reporting on AIDS for 20 years, and we were both familiar with the impossibly censorious and even brutal treatment one can expect if one is branded an “AIDS denialist, ” which entails listening to those now countless scientists and MD’s (2300 and counting) who disagree with the paradgim. We talked about our own capacity for seeing, hearing, knowing reality. “I want to know what killed EJ,” she would say, and I felt she really meant that.
More and more, as time passed, I started to see the story as one that was less and less medical, more and more psycho-social – a story of an almost crushing kind of mob rule, where the victims have no rights. Few could resist the delicious temptation to condemn a “denialist” mother, or to appropriate EJ as their own tragic little girl. It was all done in the pitch-perfect tones of the AIDS morality play some of us know so well.
So; they have had their play. The lights have gone up, the mother is, in some minds, swinging from the gallows, and the pious are triumphant in their lament. Bloggers have made their names dissecting and re-dissecting EJ’s autopsy reports with tongue-clucking certainty. ABC Primetime showed footage of Christine and Robin watching film of EJ’s brain tissue, which was said to be ravaged by an HIV protein called p24. They then posted her autopsy report on their website, which the anti-Maggiore bloggers went at like sharks after chum. Anonymous hate groups sprouted from Bethesda to L.A., distributing increasingly deranged flyers, erecting an anti-Maggiore website, and even starting a new activist group : The “Christine Maggiore Action Committee,” (CMAC, pronounced “smack”) devoted to forcing her to publicly recant her HIV positions, and “apologize for her involvement in the AIDS denialism movement.” One of these groups printed a flyer that was originally a picture of EJ in a hat, taken from a website that friends of Maggiore and Scovill put up, but the photo was defaced. Black X marks were over her eyes, her lips were morphed and turned down over ghoulish teeth, and the text read: “I died of neglect and AIDS and then my Mommy paid people big bucks to lie and say it was bad medicine! See you in HELL Mommy!”
These and other similarly grisly flyers were distributed all over L.A.. She received profane, abusive emails from email addresses with her late daughter’s name in the address, as well as heavy breathing anonymous phone calls that were traced to the Gay and Lesbian Transgender Community Center (LGBT) in L.A. who also distributed 1,500 copies of a leaflet asking people to get involved in the campaign to “…Help STOP Christine Maggiore.”
All this all courtesy of the people who for years have instructed the world about “compassion.” They were once called “AIDS activists;” now they are called “Treatment Activists.” EJ Scovill’s death has become, in the past year, the very crucible of the HIV Causation War.
I have more of these profane and cruel flyers and emails at hand, but let’s stop there. The point is made. AIDS has become synonymous with rage and hatred of those who think differently from the orthodoxy. About that there is no question. The question is: In such a climate, what are the chances of anybody, on either side, being able to see clearly what the “facts” are about the sudden death of Eliza Jane Scovill, one year ago? Especially one fact: the county coroner has produced no HIV test on EJ Scovill.
AIDS is So Obvious
Christine Maggiore originally tested positive on an HIV test during a routine medical exam in 1992, and became a poster girl for heterosexual, middle-class AIDS, speaking to students and groups of young women, telling them: : “If I can get it, anybody can.”
But the spell broke. She became an HIV “skeptic” after she repeated the HIV test and tested inconclusive twice, positive three times, and negative once. This caused her to start researching the scientific underpinnings of the HIV test, the hypothesis itself, the assumptions about illness and death attached to it, and the wisdom of the drug regimens. She founded what would become the largest “dissident” AIDS charity in the country, Alive and Well, rooted in the heretical idea that people who tested positive for HIV antibodies could live long healthy lives and not die from HIV “infection,” per se. Above all it was about empowering people to read, research, and make informed choices. She never gave direct medical advice. She authored a self-published book: What if Everything You Thought You Knew About AIDS Was Wrong? and became a kind of motivational figurehead for the HIV positives of the world, speaking, holding meetings, and working behind the scenes to help both mothers and fathers who were under siege by draconian HIV mandates.
Being hyper-aware of the high incidence of false positives, of the stigmas attached to the test and a positive result, and above all, of the crushing power of the state to enforce toxic medications, ban breastfeeding, and even seize perfectly healthy children at gunpoint if HIV positive mothers disobeyed, Maggiore says to this day that she does not regret not testing her children. Since EJ died, she had Charlie tested and he has tested negative on all tests, as has her husband Robin, with whom she has had unprotected sex for 11 years. Robin Scovill is an award-winning filmmaker who shares his wife’s convictions about the need to question HIV dogma. He won the Special Jury Prize at the AFI Los Angeles International Film festival for his documentary The Other Side of AIDS. (Scovill has been all but erased from media portrayals of the story, which focus instead on the archetypal Bad Mother.)
On May 16, 2005, Eliza Jane’s body was referred to the L.A. County Coroner to determine a cause of death, which was then listed as “unknown.” AIDS had not been considered initially. Maggiore and Scovill did not volunteer the news that Christine had tested positive, as well as negative and indeterminate, so the examiners initially did not see the girl’s body through the lens of HIV or AIDS. A friend of theirs, Keith Relkin, identifying himself as a student of public policy, called the coroner’s office on May 21, and asked if routine HIV tests were administered in cases of unexplained death. Relkin spoke to a male employee who told him the coroner does not consider routine HIV testing necessary because “AIDS is so obvious.” Coroner’s know, or knew before this case, that a PCP death caused massive destruction to the lungs and could be seen instantly.
Nor did the coroner consider, apparently, the possibility of an antibiotic-related death. The reason for all this obfuscation is clear to me: The mother is an “AIDS denialist,” and therefore stands accused of not seeing AIDS. What the medical examiners saw, before they knew whose daughter they were looking at, was nothing.
On May 18, L.A. County medical examiner Dr. Changsri called and spoke to Scovill, telling him that she had found “nothing apparent,” as a cause of death, and would need to see what might grow in cultures. Meanwhile, she would release Eliza Jane to a mortuary.
On May 26, an investigator from the coroner’s office called Dr. Paul Fleiss, one of Eliza Jane’s pediatricians, and asked if he knew about “the parents,” and “what happens when you Google the mother’s name.”
When Fliess replied he didn’t think Google searches would illuminate what killed Eliza Jane, the woman snapped that she thought Maggiore’s book had “everything to do” with the case. Under threat of subpeona, she demanded that Fleiss immediately fax Eliza Jane’s medical records to the coroner’s office.
In early August, Maggiore started calling the coroner’s office for any possible information about Eliza Jane’s second autopsy. She was told by the coroner’s office that the case had been placed on “security hold,” and no information was available. A Detective Castillo from the LAPD had ordered the hold; Maggiore was told she could get no additional information. A few days later, Maggiore called again and asked under what circumstances the hold might be lifted. The woman who answered the phone shouted: “Hold is hold. Do you understand the meaning of the word hold?” When Maggiore replied that she understood it to be a matter of waiting, the woman yelled: “It’s a police matter. You need to take it up with the police. Do you understand that?”
On September 13, somebody from the coroner’s office called and angrily told Scovill that they had determined the cause of death to be “AIDS pneumonia,” and that the family had caused them difficulty by “withholding information.”
But did EJ “have” HIV? Was she tested? Or was it her mother’s HIV positive status that caused the diagnosis—the Googling of her name and history? Did her lungs show evidence of fatal pneumonia? Did her blood show signs of a crashed immune system, as measured by lymphocyte counts, viral load, HIV antibodies, anything?
The couple were told that the new autopsy report would be ready by September 16. The couple provided their address. In this same conversation, they were told that EJ’s case had been so difficult because the coroner’s office “didn’t know HIV was an issue.”
On September 15, L.A. Times reporter Dan Costello left a voicemail message asking for comment on a story he had mostly written already, and which was scheduled to run on September 17. The L.A. Times did not have a copy of the coroner’s report, but had been told that the cause of death had been re-classified as “AIDS.” Coroner James Ribe had been brought in by Dr. Changsri to “help resolve” the case and it was he who had penned the word “AIDS” to the report. (THIS CRUCIAL) It is not known how the L.A. Times got this information, even before Scovill and Maggiore had received their copy of the coroner’s report in the mail, which was on September 23. (The Coroner’s office at press time had not returned a call for comment.)
The L.A. Times article by Costello and Ornstein contained no mention of EJ’s HIV status, or whether she was tested. Her HIV status was not contained in the coroner’s report, and for several weeks Maggiore and Scovill were faced with the Kafka-esque situation of being denied their own daughter’s HIV serology records (HIV tests, unlike other viral tests, are run repeatedly, often have different outcomes, and banding patterns that can be interpreted subjectively. It is not a clear Yes or No, and is often decided based on the patient’s identification with a risk group.)
“We have been trying since September of last year to gather information about and copies of any and all HIV-related diagnostics that may have been performed on our daughter post-mortem,” said Maggiore. “The position of the coroner’s office had been to refer us to the lab and the lab’s position is they’re not giving us anything absent a subpeona.” That seems suspicious, does it not?
Diagnostics aside, what about the corporeal evidence?
On what basis did the coroner determine, after four months, that EJ had died of PCP pneumonia? This is a question that has been analyzed into powder-grade detail on blogs, radio shows, and even network TV over the past year. HIV believers see pneumonia clear as day, those who question the causes of AIDS do not. Vituperative condescension is the one note struck by those who believe it was AIDS, bloggers being the most wild-eyed. “Bad mothering,” cant mixed with AIDS “denial” rage, against a backdrop of hatred against the entirety of Alternative Medicine Culture, depicted as “crackpots,” by the Libertarian leaning Internet rationlists. (Dean: This additon not critical. Don’t get mad.)
Maggiore herself made the following arguments in her unpublished letters to the L.A. Times and in countless skirmishes with journalists and bloggers: First, that during the last two weeks of her daughter’s life, three doctors listened to EJ’s lungs and declared them “clear.” Her lungs were operating at full capacity three weeks before her death, when she was videotaped at a birthday party blowing an unfurling paper tooter repeatedly. (This footage was given to ABC Primetime, which did not air it.) She also noted that her daughter never turned blue in the extremities, but was “pink” until the very end, and that she did not die of respiratory failure, but rather, cardiac arrest. She said that although her daughter’s lungs on autopsy were fluid filled, there was no inflammation, and that pneumonia is characterized by inflammation.
The day after EJ died, friend started worrying about the fairness and accuracy of any autopsy, and advised the couple to back up with an outside reviewer. Dr. Mohammed Al Bayati, a board certified toxicologist and pathologist, offered to review the L.A. Coroner’s autopsy findings for them, free of charge. He reviewed the autopsy data exhaustively over a period of four weeks and concluded: “Eliza Jane’s death was not caused by Pneumocystis carinii Pneumonia or any type of pneumonia. Her lungs did not show an inflammatory response to medically justify a diagnosis of pneumonia of any kind. Eliza Jane’s death resulted from acute allergic reaction to amoxicillin [a form of penicillin] which caused severe hypotension, shock, and cardiac arrest.”
Anaphylactic deaths due to so-called beta-lactam antibiotics result in up to 1000 deaths per year. According to Al Bayati, and others who have reviewed his assessment of the coroner’s report, the most striking thing about EJ’s autopsy findings were the amount of displaced fluids in the body, suggestive of a massive toxic reaction. Forty percent of her body fluids had been displaced and “leaked out into the tissues,” which is consistent with toxicity, causing the body’s vasculature to become permeable. All of her organs—lungs, heart, liver and kidneys, were way larger than normal, engorged and fluid filled, which is what Al Bayati says caused multiple organ failure culminating in cardiac arrest.
This claim—that EJ was killed by a reaction to the antibiotic—in turn caused a massive wave of attacks on Al Bayati’s credibility throughout the blogophere. It was noted that he is on the advisory board of Alive and Well, and that he is on record having stated that he does not believe HIV causes AIDS.
There are several kinds of antibiotic reactions that can be fatal: Some are immediate and others are delayed, or “late,” occurring up to 72 hours after ingesting the drug. Package inserts for Amoxycillin describe possible fatal reactions that include: “cardiovascular collapse,” “nausea and vomiting,” and “hemolytic anemia.” (EJ was found to be severely anemic.)
Credibility wars raged against Al Bayati on the one hand, and Chief Coroner Dr. James Ribe on the other. Dr. Ribe was summoned to oversee the second autopsy, and arrived at the “AIDS” diagnosis. The primary concern about Ribe’s credibility is that he is under investigation by the L.A. Appellate Court for having submitted flawed and possibly fraudulent autopsy reports in several cases cases that led to murder convictions of parents.
Ribe concluded that Eliza Jane died of AIDS as determined by PCP pneumonia and “brain encephalopathy,” after an HIV-associated protein called p24 was found in her brain tissue, which Maggiore refers to as a “scavenger hunt” set into motion when no p24 was found in her daughter’s blood. Critics say that p24 is found in healthy controls, outside of HIV contexts, and that EJ showed no signs of dementia or any brain abnormality while alive. Ribe stated adamantly on 20/20 Primetime that EJ’s lungs were ravaged by Pneumocystic organisms and her brain by “HIV,” which was not advertised as being found in the blood but only in the brain in the form of this one protein, p24.
The program set off another round of blog warfare and attacks on Maggiore. What was striking was the mercilessness in the voice of the attackers.
One woman, Heather Knolls Morgan, to cite one of countless examples of anti-Maggiore sociopathology on the Internet, wrote in to a thread at Reason’s Hit and Run blog: “Christine, your daughter is six feet under. Are you happy now?”
Last Sunday, writing on the Op Ed page of The New York Times, pharmaceutical industry funded firebrandAIDS researcher Dr. John Moore, echoing recent calls by “treatment activists” to “wage war on AIDS denialism,” cited EJ’s death as a catalyzing reason HIV dissent could no longer be tolerated, and was indeed, “deadly quackery.” He claimed in this angry sermon to have special knowledge that EJ was “infected at birth” with HIV, and that she died of a treatable AIDS infection.This is what EJ’s death means to the punitive, sermonizing AIDS establishment and why they are fighting it so breathlessly: They need it. EJ is the justification for a pogrom on HIV dissent, and is serving to uphold the very paradigm of HIV always causing AIDS—even when it is not demonstrably there.
[subhed]
I called up University of Illinois at Chicagocell biologist and toxicology expert Dr. Andrew Maniotis, who will stand accused of “agreeing with Al Bayati,” and therefore being insane, to ask him for a lay person’s tour through this thicket. In a paper he wrote (not yet published) reviewing all the evidence, Maniotis wrote: “No one in their right mind would assume that the presence of the organism, [P. Cariini] especially in the absence of pneumonia … in an immuneocompetent host … equals a lethal case of PCP.”
In a telephone interview with City Beat, Maniotis said: “I wanted to come to my own conclusions because I needed to make my own peace with Christine Maggiore’s situation, which affected me deeply. So I started at the beginning. The events leading up to the death looks pretty much like a drug reaction. They should have focused on Amoxycillin first and foremost because it was the last agent taken. When she got to the hospital they gave her more antibiotics, intravenously, which is crazy. She had a heart attack—she wasn’t dying of an infection.”
I asked him how one can cut through the din and fog of whether it could have been “AIDS,” in the absence of news of an HIV test, or CD4 cell counts or viral load, which are the “surrogate markers” that bracket the entire clinical AIDS dialectic outside of this particular case, for which we are asked to alter all parameters in the name of exorcising “denialism.”
Maniotis said something that I have never heard noted before. “They did a lymphocyte count on Eliza Jane when she was admitted to the hospital. Forget everything else. Her absolute lymphocyte count was 10,800 cells per milliliter. She was not immune suppressed. That’s all you’ve got to know. She could not have died from PCP and had 10,800 lymphocytes in her bloodstream at the time of death. No way. It just doesn’t happen. Nor could she have encephalitis. End of story, it’s that simple. 10,800 lymphocytes is very high, and the World Health Organization has said that it is a legitimate standard way of gauging the immune system, in the absence of testing for CD4/CD8 ratios. An AIDS patient has to have below 1,000 total lymphocyte counts. Normal is about 4,000 to 8,000. EJ’s was 10,800. Even according to the most strident HIV dogmatists, AIDS is still a disease of too few lymphocytes, not too many. All the pathologists I talk to find this logic hard to refute. She could not have had PCP, nor died of it.”
There is a coroner’s report that has listed as the cause of death “AIDS” for Eliza Jane Scovill, and despite all the arrows that point away from that conclusion, the witchhunt against Maggiore and Scovill is in full swing and showing no signs of abating.
A criminal investigation of neglect leading to homicide has been under way for months, and hangs like a sword over the family each day. Detectives have called all the parents from Charlie’s school, neighbors, friends, parents of playmates, and grilled them for details about EJ’s condition in the last weeks of her life. “They have been going around asking parents questions about Eliza Jane’s snot,” says Maggiore incredulously. “Was it green? Yellow? One parent opened the door and said sarcastically to the police officer: “I guess you want to talk to me about the cold sore do you? Come on in.” The officer jumped on it: “What do you know about the cold sore?”
When Shari Cliver got the call from a police officer, who said she was “calling about the death of Eliza Jane Scovill,” Cliver became enraged. “EJ was like any other kid,” she says with desperation in her voice. “I told the detective she was perfectly healthy and normal and you need to do your homework and figure out who I am and then call me back. I was this family’s nanny.”
“If you’re going to put Christine and Robin on trial you may as well put all of us parents in this community on trial. We would have done no different than what they did—they are exceptional parents,” added Cliver. She says now, “I am so furious, and I told that detective what I thought of her. I told her how disgusting this is, to all of us, how morally and ethically wrong. “
None of the parents in the TK name community have turned against Maggiore and Scovill—far from it—they support them all the way, and continually tell the investigators as much each time they come knocking.
Christine Maggiore says, in a steady voice, choosing her words carefully: “To a certain extent, in all the darkness there has been light. Blessings. My immediate world is a beautiful place. A family I love, friends and neighbors. But it’s a daily struggle. There is no immediate solace.”
Celia Farber is the author of a new book, Serious Adverse Events: An Uncensored History of AIDS. Her most recent article appeared on the cover of the March 2006 Harper’s
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