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When Denial Kills: The EJ Scovill case

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.

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22 Responses

  1. Thanks for this great post. I have been following this story for some time and was shocked that Fleiss was not relieved of his license to practice.

    I think this tragedy is a great example of how far into pseudoscience Fleiss and Gordon are willing to go. It seems clear to me that Gordon’s anti-vax stance is more pseudoscience which will result in further tragedies.

    Dr. Jay Gordon needs to stop feeding his wanna-be guru-activist ego and step away so that those who are interested in the well-being of children can do their jobs. Dr. Gordon has openly admitted that he represents probably less than 1% of physicians with regard to anti-vax and basically accuses all others in the profession of being “sheeple” or corrupted by vax companies. What an amazing ego to believe that he is both smarter and more ethical than 99% of physicians and toxicologists. He has no proof of either but WE do have proof that he has allowed psuedoscience to trump the well-being of a child and this led to her death.

  2. A did a Google Search and came up with an article that discusses the same above. I think it says it better than I could: http://www.nationalreview.com/seipp/seipp200509290815.asp

  3. Sorry for the serial postings:)

    Maggiore and other denialists left their mark in South Africa by encouraging the government to take a AIDS denialist position which they did – for years. Many people died thanks to the spread of their pseudoscientific beliefs.

    Dr. Gordon affiliated himself with people who encouraged policies that cost lives – in the thousands. Thank you for starting this blog – As this article describes the proponents of pseudoscience are a danger to us all.

    http://www.iht.com/articles/2006/06/04/opinion/edmoore.php

  4. It just makes me sick to know that parents and “doctors” (I don’t think anyone who behaves like Gordon or Fleiss deserve the title) are willing to gamble with people’s lives just to make a point. All they are proving is that they value their own viewpoints more than people’s lives.

  5. What enrages me is that Maggiore is clearly nuts, yet there are so many people willing to collude in her insanity. And a little girl is dead because of it.

  6. I remember the late Cathy Seipp’s article at the time. Another one which hit home IMO was Trey Ellis’ The Politics of Health. While I don’t think that this kind of stupidity is the sole province of either the left or the right wing, I do see some connection between extreme politics (left/right/libertaraian) and belief in conspiracy theories which would predispose one to “question authority” ad absurdum.

    I might add that if you actually do take the time to listen to the podcast of the Maggiore/Scovill interview (not that you have to, ‘cos it’s fairly boring), Robin Scovill says that he was drawn to Maggiore’s philosophy after “I saw how beautiful she was”. An odd way to think an issue through, isn’t it?

    ‘Beauty is truth, truth beauty,—that is all
    Ye know on earth, and all ye need to know.’ (Keats)

  7. HIV denialism is far more dangeorus even than antivaccinationists, especially as regards children. Maggiore and Scovill SHOULD have been prosecuted, and they shoudl have lost custody of their son. If they wouldn’t get their daughter treated for HIV, there’s no telling what they wouldn’t treat their son for. Gross negligence and no apparent repentance– she is clearly unfit to parent, even now that the risk of her son getting her HIV is gone.

  8. I agree they should have been prosecuted, because they seem to have learnt nothing and I think it would have been publically beneficial for al-Bayati’s ‘analysis’ and Maggiore’s theories to have been ripped apart in a court of law and shown for the paranoid delusions they are.

    Not sure about losing their son, though – as he is not currently in danger of contracting HIV from his mother, and I’m not sure it would be in Charlie’s best interest to be separated from the parents who love him and overall treat him well. If nothing else, the case does show that Maggiore loved her daughter enough to take her to the hated “allopathic” doctors and give her “toxic” antibiotics when she was sick enough; the failure was as much on the part of the wacky medical practitioners she went to.

  9. Any person that would put an unproven and dangerous ideology over their child’s safety would do it again, especially in this case as she does not admit wrongdoing. As long as Charlie is healthy, he’ll probably be okay, but if he ever gets sick or hurt, what then? She’s made it clear she hates and mistrusts doctors and only went to them when it was clear her daughter was extremely ill; she now blames her daughter’s death on the doctors, thus showing even more mistrust and even more likelihood of denying her living child medical care.

  10. Basiorana – I have to say initially I thought removing their son from their home was unnecessary but you make an excellent case – You are right, it does beg the question. Under what circumstance would she allow Charlie to have medical care?
    I certainly hope it never comes to that.

  11. I confess to still being squeamish about removing Charlie. Though certainly, CPS should be watching them like hawks…

  12. I could maybe support keeping him there IF she agreed to mandated well-child visits at regular intervals, like twice a year or so, unless he had any future health complications. That would be an okay compromise in my mind. Yet as it stands it’s just ridiculous that she can cause the death of her daughter through gross negligence, fail to repent in any way, and have no consequences.

  13. I just found out that a woman in my playgroup takes her kids to see Paul Fleiss. UGH. I hate that these asshats practice in my backyard. I’m scared of what my kid will be exposed to.

  14. Ugh is right! Do they know his history and that he’s on probation?

  15. I don’t know, but she’s raving about how wonderful he is and recommending him to other parents. He also doesn’t have admitting privileges to any hospitals, so if your kid is admitted you’ll have to find another doctor. I wonder if she knows that as well.

    She recommended Fleiss on the message board for our play group in response to a request for ped referrals. Now I’m torn about what to do. It’s pretty aggressive to say, hey, your doctor is a quack and a convicted tax cheat who helped kill a kid through neglect. But I want other parents to know his story so they can steer clear of him.

  16. I actually read this Mothering issue (someone had given me a bunch of old back issues, I’d never pay for it myself, kind of like awful Parenting mag). I was absolutely horrified. It was so bizarre and absurd, even for Mothering.

    Though the NRO article linked in these comments is pretty absurd, too. I mean honestly, breastfeed a toddler and they’ll require psychotherapy? I’d love to see the empirical evidence for that one.

  17. Unfortunately, you can’t have it out with the author, Katie. She passed away about two years ago from cancer.

  18. Why would I want to “have it out” with her? Oh, because I wondered rhetorically where the evidence for her claim is?

    It’s unfortunate she passed away. Cancer sucks, I’ve had way too much personal experience with it.

  19. Christine Maggiore and ONLY Christine Maggiore is responsible for the death of Eliza Jane Scovill. She seeks physicians who will not question or contradict her view of HIV. The reason her children were home birthed is because no doctor she called would agree to a hospital birth without testing the children after birth. So, you see, Fleiss or Gordon were first probed on their HIV stance and only after they “passed” were they allowed to see them. Should Gordon have suggested an HIV test for Eliza Jane, he would have been promptly fired. Further, Gordon has been rather vocal (see gay.com interview) saying that he suspects the reason Christine lied to his office and said Eliza Jane was fine days after seeing him and the reason Maggiore never brought her daughter back when she was, in fact, not improving is because he would have connected the dots – hmm…HIV positive mother, child never tested and child has illness that doesn’t clear in 3 weeks? Gordon claims he would have immediately pushed for testing and Christine knew that – which is why she took her daughter to Gordon and then to Fleiss and then to the quack from Denver who was visiting L.A. Everyone knows the benefit of having one consistent physician is so that person CAN connect the dots and make sense of an illness. If you go to various doctors, the illness is seen through the lens of the initial occurrence rather than an incremental illness.

    Maggiore is sly as a fox. Sadly, her manipulation was used against her own daughter – who is now dead. Thanks mom!

  20. Christine herself died of AIDS December 27, 2009.

  21. I for one am glad that crazy quack is gone from this earth & spreading her insanity as gospel. Narcissistic pig is all she was. Got HIV, didn’t want to be viewed as a whore…denial, Kid has AIDS because of your denial….denial, kill kid because of your denial, but all that matters is you don’t have to take accountability for your actions. I would’ve liked to have met this woman in a dark alley one night. She should’ve been the one to die, not her innocent child. What a shame!

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