(no subject)

[rivka]

Because AIDS conspiracy theories are part of my grant application, I've been reading a bunch of them. This is very much not my idea of a good time.

I knew, vaguely, that AIDS denialist Christine Maggiore's daughter died of AIDS a couple of years ago. I didn't know the full story - for example, that she hired a toxicologist who is on the "medical advisory board" of her denialist organization (although he's not an M.D. or any other kind of physician) to review the autopsy report and come up with an alternative theory for how the child died.

The guy had a rough time battling with the facts - it's not easy to explain away the fact that the kid's lungs were full of pneumocystis carinii (PCP pneumonia) and her brain was full of p24, the core HIV protein - and in fact, his alternative theory has been exhaustively rebutted by blogger Nick Bennett, who has an MD in pediatrics and a Ph.D. in the molecular biology of HIV. Here's all that Maggiore could come up with as a response:

The blogger, who is well known to us (Nick Bennett) states on his website “I have never recieved funding from any pharmaceutical company that makes HIV antivirals. I do not get and have not ever been paid to do this.” This is true, but it’s cleverly worded to avoid the embarrassing fact (that he admitted to me in an email in December, 2005) that “I was funded, on paper, by Astrazeneca for my PhD”.

Astra Zeneca does not make AIDS drugs, but they have still purchased Nick’s loyalty for pharmaceutical solutions in general. And AstraZeneca probably benefits from AIDS in many other ways, as AIDS patients are generally (over)dosed with a variety of drugs apart from antiretrovirals.

"I can't believe," I said to Michael, "that even after AIDS killed her daughter, she's still clinging so hard to denialism." And then I realized: of course. It makes perfect sense. No matter how far-fetched the theories she has to endorse, no matter how mountainous the evidence on the other side, no matter how the discrepancies mount up, she has to keep believing. Because if she doubts, even for a moment, then she has to accept her responsibility for her child's death.

I told you this wasn't my idea of a good time.


Blogger Dean Esmay was apparently a big Maggiore supporter when the story broke. One of the commenters on his site, someone named Elizabeth Reid, had two extremely cogent comments that sum up the discrepancies well:

Comment #1: To explain the findings via some other mechanism than HIV infection, Al-Bayati has to invoke a number of other low-probability events, all occuring simultaneously. She started off in complete good health although she was very small for unrelated reasons, then she got an atypical parvovirus infection (no characteristic rash, unusually serious illness in a child who has been asserted to be exceptionally healthy), then she had a rare anaphylactic reaction to a medication which was not alleviated by epinephrine injection and proved fatal, all while coincidentally fighting off a P. carinii infection so rarely seen in healthy individuals that presence of the infection is usually considered diagnostic of immune dysfunction, and then the tests of her brain lesions displayed a false positive to HIV.

Comment #2: According to everything I've read, Maggiore and her husband have what could be termed a deep distrust of the medical profession. The kids weren't vaccinated, she treated her own possible cervical cancer with juice, supplements, and regular exercise, and of course she thinks they're all completely wrong about HIV/AIDS.

The accounts of Maggiore's daughter's illness as told by those who are sympathetic to her make it sound pretty minor (Dean has described it as 'the sniffles and a low grade fever'), presumably in contrast to the suddenness of her decline and death. However, during the course of this minor illness, Maggiore took her daughter to doctors four times.

Why would a woman who has such a pronounced distrust for conventional medical treatments take her daughter to a doctor for 'a runny nose'? Why would she give her child amoxicillin for an simple minor ear infection when she treated her own potential cancer with juice? I'm a total believer in my pediatrician, but I don't take my own child in for runny noses and low-grade fevers unless they're unusual or persistent. I'm not slamming her for this, because there's nothing wrong with being concerned, but it does make me wonder if a) the illness wasn't more pronounced all along than we're being led to believe, or b) Maggiore had some other reason to be concerned about her daughter's health.

Comments

[micheinnz.livejournal.com]

How old was her daughter? In New Zealand it's very likely that Maggiore would have been charged with criminal negligence, or failing to provide the necessities of life.

[rivka.livejournal.com]

She was only three years old.

Maggiore could have been charged in the U.S. as well, but the District Attorney's office decided not to press charges.

[micheinnz.livejournal.com]

Oh for frick's sake. If ever there was a case when charges _should_ have been pressed. But I suppose she's "suffered enough."

[tracicle.livejournal.com]

The question is whether she has learned from this and whether Charlie, her 8-year-old, is safe in her care. I get the impression that her stance on HIV/AIDS hasn't changed at all, in which case I should hope her child will be at least tested for HIV and at best removed from her care.

[rivka.livejournal.com]

He has been tested (since his sister's death, and, I believe, under threat of Child Protective Services involvement), and he's HIV negative.

There's only about a 25% chance that the child of an HIV-positive mother will be HIV-positive. In Maggiore's case, that risk would increase because she breastfed both kids, but would also probably decrease because, given her obvious good health, her viral load is presumably pretty low.

[adrian-turtle.livejournal.com]

It seems that grief often makes people a little crazy. Despairing, panicky, fear of that someone you love is going to die can work the same way...there's not a very clear distinction between shaking one's fist at the Almighty and shouting, "I want this to be different!" or "You have to make this different!" and actually believing it IS different.

"I can't believe," I said to Michael, "that even after AIDS killed her daughter, she's still clinging so hard to denialism." And then I realized: of course. It makes perfect sense. No matter how far-fetched the theories she has to endorse, no matter how mountainous the evidence on the other side, no matter how the discrepancies mount up, she has to keep believing. Because if she doubts, even for a moment, then she has to accept her responsibility for her child's death.

Yes. After the dust settles, and she's not working on panic anymore, she still has to believe. She doesn't dare believe otherwise.

[rivka.livejournal.com]

It seems that grief often makes people a little crazy.

It's because I understand about the grief that I'm trying to cut her some slack for saying this (quoted in the LA Times article linked above):

"Why our child — so appreciated, so held, so carefully nurtured — and not one ignored, abused or abandoned?" she wrote. "How come what we offered was not enough to keep her here when children with far less — impatient distracted parents, a small apartment on a busy street, extended day care, Oscar Mayer Lunchables — will happily stay?"

I don't really think you can hold someone accountable for crazy, stupid things they say within months of their child's death. But that quote still leaves me shaking with anger. It's one of the most astounding examples of mote-vs.-beam-in-eye that I've ever seen. You know? I don't feed Alex Lunchables, because I don't think they're healthy. But if it were a choice between Lunchables and HIV-infected breastmilk? It'd be nothing but sodium, nitrites, and artificial colors and flavors, 24 hours a day.

[klwalton.livejournal.com]

That quote made me want to throw up. I saw Scovill's documentary, and it made me want to throw things at the television. But that quote? Dear god in heaven, how... there isn't even a word. Angry? Oh, yeah.

[jonquil.livejournal.com]

Hee. I sewed that sampler. I really need to frame it and bring it to work.

[klwalton.livejournal.com]

Whoa. Can you point me to a source for the pattern? 'Cause it's been years since I've done needlepoint, but I'll bet I can remember enough to do that one. I would *love* to have that!

[cynthia1960.livejournal.com]

Ask, and ye shall receive.

Subversive Cross Stitch (http://www.subversivecrossstitch.com/)

[klwalton.livejournal.com]

Bless you!!! :)

[jonquil.livejournal.com]

Subversive Cross Stitch. Great folks.

[windypoint.livejournal.com]

Our family is close enough to her description of a family that makes her wonder why their kids stay.

impatient distracted parents

I'm usually tired (due to medical issues) which gives much the same effect

a small apartment on a busy street

and we live in a small, crowded terrace house in a busy city

extended day care,

and have sent both our kids at times to daycare up to three days a week,

Oscar Mayer Lunchables

and while I don't feed my family lunchables, there have been plenty of lunches made of crackers, cheese, celery and apples because I'm so tired I can barely move.

To say I'm annoyed by her is rather an understatement.

[tavella.livejournal.com]

Yup. She basically murdered her child, and acknowledging reality would mean acknowledging that.

[redbird]

And at the end of the article, she seems to believe that having a nice house and not putting the children in day care should have kept her daughter from dying.

[rivka.livejournal.com]

More than that, she seems to think that a parent who does use daycare and feeds their kid junk food deserves to lose a child.

[jonquil.livejournal.com]

Yes, this. Not just "my kid didn't deserve to die" but "Yours does, because you're a Bad Mother."

I read somewhere that one thing that keeps people in cults is that to leave, they'd have to acknowledge that years of their life had been wasted. It's hard to walk away from sunk costs. I doubt this woman will ever be able to say "I was wrong, and that killed my child."

[beckyzoole.livejournal.com]

It's hard to walk away from sunk costs.

Heh. That's what kept me in a bad marriage for ten years.

[writingortyping.livejournal.com]

Maybe I'm being hysterical, but I read that as, "I'm rich - this shouldn't have happened to me."

Because money fixes everything. Everyone knows that.

Aside from all of her pernicious nonsense and the faux-balance posited by that article for taking her seriously (again - would she be taken seriously by anyone if she wasn't wealthy?), the weird starfucking tangents that shot out of that article (Fleiss treated Madonna's child? You don't say!) were very odd.

[redbird]

"I'm rich" and "I live in the suburbs, not in that yucky city which is full of people who aren't like me" and "I'm the right kind of parent, not like all those other people who have to work for a living."

infuriating bullshit

[wanderingaengus.livejournal.com]

I wonder if people like this are a predictable, almost inevitable phenomenon -- something that's going to show up at one tail of the bell curve.

I've got a brother who works in public health (CDC, WHO, NYCDHMH) who told me some stories he'd heard from the end of the smallpox campaign. My brother said he didn't know if he'd feel right about being there at the end of the polio campaign if it meant lining people up at gunpoint and forcing them to get vaccinated.

It's never a good idea to put a gun to somebody's head to make them do something for their own good, but there are people who, absent the gun, will wreak tremendous harm on themselves and others.

more pronounced all along than we're being led to believe

[jonquil.livejournal.com]

If you follow the links to Bennett's paper, the child had severe failure to thrive. The only way that you wouldn't notice that your child was in the third percentile -- when you're an experienced parent, which Maggiore was -- is that you chose not to notice it.

[hobbitbabe.livejournal.com]

How sad, how avoidable, and how horrible that she is spreading those opinions around and getting buy-in from other parents.

Also, that L.A. Times article explains that all three doctors she consulted before her daughter died are known for being unconventional, one by being a critic of male circumcision. Um.

[rivka.livejournal.com]

all three doctors she consulted before her daughter died are known for being unconventional, one by being a critic of male circumcision.

Yeah, that was a real example of "one of these things is not like the others...", wasn't it?

...Although there are people who are total wackos about being anti-circumcision (as opposed to being anti-circumcision for the many rational reasons) so maybe that's what the LA Times meant.

I remember finding a book about it that had been donated to the U of Iowa library. It was full of accounts of men who recovered memories of their circumcision during hypnosis, and discovered that it was the root of all of their psychological problems. And it had a gorgeous graph showing a perfect correlation between circumcision rates and rates of violent crime in the U.S., for a carefully selected window of ears.

If this doctor wrote that book, or something like that? Then the LA Times had a point. If not, I wonder how the hell that sentence got into the article.

[rivka.livejournal.com]

Um, that was supposed to be "window of years." I don't even know what "window of ears" would mean.

[hobbitbabe.livejournal.com]

Something about conflating the dangers of pierced ears?

[tea-dragon.livejournal.com]

That would be "for the select group listening because it's what they want to hear anyway" :)

[rivka.livejournal.com]

Hee! You're exactly right.

[hobbitbabe.livejournal.com]

Yes, that's better!

[huladavid.livejournal.com]

I hate to ask a pretty basic question (and some folks might be surprised that this is coming from ME of all people) but has HIV been totally tied to AIDS? My out-of-date reading gave me the impression that there was some question about this.

Thanks.

[rivka.livejournal.com]

*sigh* See, this is why AIDS denialists suck. They've managed to muddy the water sufficiently that it's possible for an intelligent person who isn't paying close attention to get confused.

Yes, HIV has been totally tied to AIDS. There hasn't been any question about this for twenty years.

Here's a NAIAD fact sheet (http://www.niaid.nih.gov/factsheets/evidhiv.htm) outlining the evidence that HIV causes AIDS, and here's (http://www.aidstruth.org/) a website devoted to refuting the denialists.

[baratron.livejournal.com]

Wow. When I started reading this, I thought you were talking about a woman with an older daughter, around 21 years old, who'd become HIV-positive through intravenous drug abuse or rape or something. Not a 3 year old who caught it from her HIV-positive, AIDS-denying, mother. That's awful :(

I am, however, grateful to you for drawing my attention to it. AIDS deniers are as bad as global warming deniers, and possibly even worse depending on your priorities (i.e. whether you prioritise people currently alive today over theoretical future people). Ugh. That poor child :(