by hilzoy
From the LATimes:
"Christine Maggiore was in prime form, engaging and articulate, when she explained to a Phoenix radio host in late March why she didn't believe HIV caused AIDS. The HIV-positive mother of two laid out matter-of-factly why, even while pregnant, she hadn't taken HIV medications, and why she had never tested her children for the virus."Our children have excellent records of health," Maggiore said on the Air America program when asked about 7-year-old Charlie and 3-year-old Eliza Jane Scovill. "They've never had respiratory problems, flus, intractable colds, ear infections, nothing. So, our choices, however radical they may seem, are extremely well-founded."
Seven weeks later, Eliza Jane was dead.
The cause, according to a Sept. 15 report by the Los Angeles County coroner, was AIDS-related pneumonia. These days, given advances in HIV care, it's highly unusual for any young child to die of AIDS. What makes Eliza Jane's death even more striking is that her mother is a high-profile, charismatic leader in a movement that challenges the basic medical understanding and treatment of acquired immune deficiency syndrome.
Even now, Maggiore, a 49-year-old former clothing executive from Van Nuys, stands by the views she has espoused on "The Ricki Lake Show" and ABC's "20/20," and in Newsweek and Mothering magazines. She and her husband, Robin Scovill, said they have concerns about the coroner's findings and are sending the report to an outside reviewer. "I have been brought to my emotional knees, but not in regard to the science of this topic," said Maggiore, author of an iconoclastic book about AIDS that has sold 50,000 copies. "I am a devastated, broken, grieving mother, but I am not second-guessing or questioning my understanding of the issue.""
"Maggiore said she once bought the standard line. HIV would evolve into AIDS. And AIDS, she firmly believed, would kill her.(...)All that changed two years later, she said, when she spoke to UC Berkeley biology professor Peter Duesberg, whose well-publicized views on AIDS — including that its symptoms can be caused by recreational drug use and malnutrition — place him well outside the scientific mainstream. Intrigued, Maggiore began scouring the literature about the underlying science of HIV. She does not know how she became HIV-positive, but she came to believe that flu shots, pregnancy and common viral infections could lead to a positive test result. She later detailed those claims in her book, "What If Everything You Thought You Knew About AIDS Was Wrong?"
Maggiore started Alive & Well AIDS Alternatives, a nonprofit that challenges "common assumptions" about AIDS. Her group's website and toll-free hotline cater to expectant HIV-positive mothers who shun AIDS medications, want to breast-feed their children and seek to meet others of like mind. One of her tips: Mothers should share their wishes only with trusted family members and doctors who will support their decision to avoid HIV/AIDS drugs and interventions.
She has stayed healthy, she said, despite a cervical condition three years ago that would qualify her for an AIDS diagnosis. In a 2002 article for Awareness magazine, she facetiously refers to it as "my bout of so-called AIDS," saying it coincided "perfectly with the orthodox axiom that we get a decade of normal health before our AIDS kicks in."
During a March interview in her orderly, well-lighted home, Maggiore seemed, if anything, an exceptionally devoted mother. She served homegrown vegetables and fresh pasta to Eliza Jane, listening attentively as the healthy-looking little girl chattered happily about her two imaginary friends. At one point, when Eliza Jane wanted to swipe away a spider, her mother urged respect for the tiny creature. "He is part of our family," she said.
What set Maggiore apart became clear only when she talked about her views on medicine. She didn't vaccinate either child, believing the shots did more harm than good. She rejected AZT and other anti-AIDS medications as toxic. "I see no evidence that compels me that I should have exposed a developing fetus to drugs that would harm them," she said. Maggiore hired a midwife and gave birth to her children at home; Charlie was born in an inflatable pool on her living room floor. She wanted to avoid being tested for HIV or pressured to use AZT in a hospital, although technically neither is required by California law. She breast-fed both children, although research indicates that it increases the risk of transmission by up to 15%. (...)
Maggiore estimates that 50 HIV-positive women have come around to her point of view. The Times interviewed nine who said she helped them plot medical and legal strategies to avoid being forced to have their children tested. Lori Crawford, a child welfare worker in Tempe, Ariz., said Maggiore helped her avoid an HIV test in North Carolina when she was pregnant with her daughter three years ago. Crawford said Maggiore informed her that North Carolina didn't have mandatory HIV testing for pregnant women and suggested she decline the test if health authorities in that state recommended it. "Christine and her book saved my life," said Crawford."
Three doctors saw Maggiore's child, Eliza Jane. None of them recommended that she be tested for HIV, though two knew her mother's HIV status. They diagnosed an ear infection. And then:
"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."
So who were these doctors?
"Fleiss, Gordon and Incao all are known for their unconventional approaches to medicine. Gordon and Incao are staunch opponents of mandatory vaccination of children; Fleiss is a vocal critic of male circumcision. Incao did not return repeated phone calls this week.Alerted to the case by The Times, several medical experts said that doctors who knew Maggiore's circumstances — that she was HIV-positive, hadn't been treated during pregnancy and had breast-fed her children — should have pushed for the child to be tested. If she refused, they should have referred the matter to authorities. According to interviews and records, Gordon and Fleiss have long known Maggiore's HIV status and that she breast-fed her children.
Experts also said that when the girl became ill, any doctor who saw her should have treated her as if she were HIV-positive. That would have meant giving her a stronger antibiotic, such as Bactrim, instead of the relatively low-powered amoxicillin. "If you look away from something you're supposed to be looking for, that's called willful blindness," said Michael Shapiro, an ethicist and law professor at USC, "and willful blindness is one aspect of determining the negligence.""
(Yes, Dr. Fleiss is, apparently, Heidi's father.)
The aftermath:
"Maggiore said that her daughter's death has taken a toll on her health; she's had trouble eating, sleeping and, this past summer, simply breathing. She's treated her symptoms with Chinese herbs, walked five miles a day and practiced yoga, and is now feeling better, she said. (...)
She struggled most with the whys."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?""
Answer: because when you offer everything except something your child needs to survive, it's not enough. Offering your children affection, toys, time and attention, games of touch football, trips to petting zoos, but no food will kill them. Likewise, if your child is HIV positive and you give her everything a child could want except appropriate treatment, your child will die.
***
Snarky responses aside, however, how did this happen? The first step -- deciding that HIV does not, in fact, cause AIDS, and that HIV tests don't reveal much of anything -- is pretty easy to understand. The combination of wishful thinking and the seductions of thinking that you have uncovered an important truth that the scientific establishment is just too blind, or too invested in its own hypotheses, to see, are clear. I've always thought that recognizing that contrarianism is an unworthy use of the human intellect is an important part of growing up, but I know enough people who haven't yet learned this lesson not to find them surprising.
You cross a line, though, when you move from holding quirky opinions to advocating them to others, especially when those opinions literally concern matters of life and death. Maggiore owned a clothing company. Nothing in the article I cited gives us any reason to think that she has any background in biology or medicine. I am all for people trying to inform themselves about their medical condition on the internet -- I think it's a truly wonderful thing that we can do that -- but there's a huge difference between trying to learn about your own condition and advocating courses of treatment for others, especially when your recommendation is to disregard the views of the entire medical establishment on a matter of life or death. That really requires that you ask yourself what reason you have to think that you are right, and to be vividly aware of the possibility that you are not. Personally, I think that if you genuinely believe that you are right on such a topic, the responsible thing to do is to enroll in medical school, get the training you need to be sure you really do understand what you're talking about, and hold off telling people not to take AIDS medication until you're through. Anything less is just irresponsible.
(Maggiore disagrees: in an appearance on 20/20, she said: "I don't think it takes a medical degree or a scientific degree when your life is on the line." That's just idiotic. Not as idiotic as this statement from her partner, though: "I just never really bought the premise that if you have sex with the wrong person, you're going to be infected and your life as you knew it is over. I just never really bought that.")
You cross a different sort of line when you start making decisions that could kill your child. In one sense, this is not all that different from trying to get other people to make similar decisions. In both cases, you are staking other people's lives on your being right, and if you don't have the knowledge that entitles you to make that call, you are being irresponsible. In another, though, it's different. Unknown other people shouldn't be just an abstraction, or a target for your missionary zeal, but sometimes we do treat them that way. Your own child, by contrast, can never be just an abstraction: she is your child, a tiny person who is completely dependent on you and the decisions you make. A responsible person would recognize that even perfect strangers are someone's child or lover or friend, and that the fact that we don't know the details that would make their lives an object of vivid concern is morally irrelevant. But anyone at all should view her own child that way.
And yet, according to the Times story, Maggiore took a whole series of decisions that placed her children's lives at risk. If you are pregnant and HIV positive, you can dramatically reduce the chances of transmitting HIV to your children by taking a course of AZT and not breastfeeding your children. According to the article, Maggiore did not take AZT, and did breastfeed her kids. While people can debate the safety of this or that specific vaccine, not vaccinating your children at all is plainly taking huge risks both with their lives and with others'. According to the article, Maggiore didn't have her children vaccinated. This is crazy.
(I should say that in general, I think that a lot of Americans are much too risk-averse when it comes to their kids. I once watched the annoying husband of a friend of mine bawl her out for eating a spoonful of coffee ice cream while she was pregnant, and I thought, not for the first time: if all the things people like him get all bent out of shape about were as serious as he thinks, the human race would have gone extinct a long time ago. But that's an attitude I hold only because I also assume that there are some things parents should obviously do to keep their kids safe. Buy the car seat and the bike helmet; lobby the people in charge of your neighborhood playground to tear up the concrete underneath the jungle gym; exercise basic common sense, and only then count on the basic resilience of the human body. And vaccinating your kids, and taking AZT if you're pregnant and HIV positive, come way before bike helmets on my list of things basic common sense requires.)
One explanation of this, I suppose, is that by the time her first child was born, she seems to have started speaking publicly against the idea that HIV causes AIDS. To take AZT, have her child tested, and so forth would have required her to confront the possibility that she had not only been wrong, but had advised others to take serious risks that she was not willing to take on behalf of her own children; and it would required risking this becoming public knowledge among what seems already to have been her following.
This is, of course, a dreadful reason to put your children's lives at stake. But it's also an understandable one. I mean, who would relish the idea of saying, in essence, 'I was willing to advise all sorts of people to put their own lives at risk, but now that I have to consider the life of someone I really care about, I see that I was wrong'? That is, of course, why Maggiore should have tried to be absolutely sure she was right at the outset. But it's also why, it seems to me, we should all take any occasion that presents itself to practice publicly admitting our own errors. After all, it's easier to start with little baby steps, like saying that you really hadn't thought through a decision you made at work, or even admitting that you maybe you should have stopped and asked for directions half an hour ago, than with saying that you were a bit too quick to advise other people not to take their AIDS medications. You never know when your intellectual honesty is going to be well and truly tested, and it's best to be in practice when it is.
Whatever the explanation, though, Maggiore clearly knew what she was doing, and how other people saw it. From her 20/20 appearance, which was filmed while she was pregnant with Eliza Jane:
"Connie Chung: They had made a decision to play Russian roulette with their own lives. But would they be willing to gamble with their baby's life as well? Doctors warned that there was a 25 percent chance that Maggiore would transmit the deadly virus to her unborn child - unless she took powerful anti-HIV drugs like AZT. Maggiore refused.Christine Maggiore: I did not want to expose my growing child to toxins during pregnancy.
Dr. Krim: I can't believe a mother would put her child at risk. This is where I say good luck to her, because she is taking a terrible chance. (...)
Connie Chung: Yet when it comes to her son, Maggiore has chosen to remain uninformed. Like his father, he's never been tested. [To Maggiore:] A lot of people would think that it was irresponsible of you to not test him. Doesn't he have a right to know?
Christine Maggiore: I don't need to risk introducing into his life a label that will wrongly describe him as ill when he's not. (...)
Connie Chung: Right or wrong, Maggiore remains convinced that she's beaten the odds. Today she's five months pregnant with her second child, a daughter. She's not taking AZT or other anti-HIV medications during pregnancy. As with her first child, Maggiore is rolling the dice against a dreaded disease. And it's winner-take-all."
And yet her child was never tested for HIV, let alone treated for it. An HIV test is not just about "introducing into his life a label that will wrongly describe him as ill when he's not". (Leave aside her amazing confidence that her child is not ill.) It's about treatment decisions, not all of which concern AZT, to which Ms. Maggiore objects. Decisions like, for instance, what sort of antibiotic to prescribe for what seems to be an ear infection. Decisions that could save a child's life.
***
The more time goes by, the more I think that our moral lives depend, to an enormous degree, on our ability to stop and think before crossing certain lines; to recognize that it is time to stop acting in whatever ways come naturally to us, since we are about to go, in some way we might not be able to articulate at all, way too far. -- I once knew someone who had a sister she had become estranged from, in part because the sister had bad problems with drugs, and who, at a certain point, decided to track her sister down. Phoning didn't work, since her sister's phone had been cut off, so she asked around, got her sister's address, and drove out to see her. It was dusk when she got to her sister's place, and she saw this scene: the kids running around outside, naked and dirty; no lights, since the electricity had been cut off; and her sister and her sister's boyfriend combing through the carpet looking for little bits of crack cocaine.
One of the things that always scared me about that story was this: I understand how it would be possible to get addicted to crack. Rumor has it it's pretty easy. But wouldn't you think that at some point you'd say: my life has just gone out of control, and I have to do something? And wouldn't you think that whenever that point came, it would be before you found yourself combing through the carpet with no electricity and your kids running around naked and unsupervised? What would it be like, exactly, to miss all the earlier warning signs, and let your life get to that point?
Similarly, there was a story a few years ago about a man who was supposed to drop his child off at child care on the way to work, but forgot, and left her in the car in the garage at work, where she died. (A story that just gets more horrible every way you turn it around in your mind, and every new question you ask about it.) Now: I am very absent-minded. I forget things all the time. But I would like to think that I would be incapable of forgetting anyone's child, let alone mine, in the back seat of my car for eight hours. But how could I know? I mean: the whole problem with forgetfulness is that you don't remember the thing you've forgotten: it is not in your mind, being ignored; it's just absent. If, as I hope, I wouldn't be able to do this, it would have to be because there are, somewhere, limits to my absent-mindedness: lines that separate the things I can forget from the things I can't.
And that's what spooks me most about the story of Christine Maggiore: each of the things that happened is individually comprehensible, but taken together, they involve not having any of these limits. Just as I can understand getting addicted to crack, I can easily understand being contrarian even in the face of what ought to be convincing evidence, enjoying being the embattled advocate for what I took to be an unpopular truth, not being responsible enough about what I say in public, not wanting to admit my mistakes, and so on. And just as I can't really understand ignoring all the lines, the boundaries, the warning signs that say: hilzoy! Pay attention! Your life is going completely, horribly out of control! that stand between me as I am now and me combing through a carpet looking for little rocks of crack, I can't understand Christine Maggiore letting things go so far that she was willing to gamble with the life of her child.
***
Final points: I think that there is a special place in hell reserved for people with the training to count as experts who use that training to advance crank theories, when they should know better. Recall:
"Fleiss, Gordon and Incao all are known for their unconventional approaches to medicine. Gordon and Incao are staunch opponents of mandatory vaccination of children; Fleiss is a vocal critic of male circumcision."
I'm not up on the circumcision debate, but opposing mandatory vaccination is just irresponsible. If these were the doctors who advised Ms. Maggiore when she decided not to have her children vaccinated at all, I hope they did everything they possibly could have to change her mind. And the doctors who knew Ms. Maggiore's HIV status but did not try to get her to have Eliza Jane tested should, if this story is accurate, have some serious questions raised about their actions. (And, for the record, what possessed Arianna Huffington to give one of these doctors a platform on her blog?)
I also think that this is not one of Dean Esmay's finest moments. He learned that Eliza Jane died four months ago, shortly after her death. Most toddlers in this country don't die, especially when their parents aren't poor. Eliza Jane did die, and she was the child of parents who had made very risky health care choices on her behalf. I appreciate Esmay's unwillingness to speculate on what happened, but it might have been a good idea to mention both her death and his uncertainty about its causes before now, since he has previously cited Ms. Maggiore as one of the people who convinced him to become an AIDS skeptic, promoted her partner's* film about AIDS, in which she figures, and, most importantly, cited the health of her children, in particular, as evidence against the hypothesis that HIV causes AIDS:
"Her name is Christine Maggiore, and she's written a book on the subject (I've mentioned it before). Her husband's made a documentary about her and others like her (which I've also mentioned). She and her perfectly healthy, never-medicated school-aged children were still alive and well as of January 25, 2005. I was flattered to hear from her.Pretty amazing that a woman who should just happen to decide she didn't believe HIV caused AIDS, and just happened to write a book about it, also by pure chance happens to be one of those rare people who have unusually long latencies or is maybe one of those immune people, isn't it? Well stranger things have happened."
And:
"Christine Maggiore was first diagnosed HIV+ in 1992 and for two or three years she spouted the party line although she never took meds. By '95 she decided she didn't believe, began saying so, and was vilified for it. Eventually she wrote pamphlets about it, with people saying she was "in denial" and would soon die. When she got pregnant no OB/GYN would see her because she refused AZT, so she wound up being forced to give birth at home with a midwife.Her kids are now both quite healthy, and the eldest will be entering High School soon. There are other kids wandering around just like hers, some of them already in High School.
By amazing coincidence she just happens to turn out to be one of the lucky ones?"
And:
"Look man, we now literally have hundreds of cases of HIV+ women who have said "no way" to any AIDS chemotherapies who've gone on to give birth to healthy babies. Maggiore is one and she founded her group to support others. (...)Maggiore started a movement and it's growing. Maggiore is healthy 10+ years out now, and her kids are in school, med-free, and fine. She can put you in touch with other women in her support group with similar stories all over the country.
How much longer you think this can go on before someone thinks something serious is amiss here? Or before someone at NIH or anywhere else says, "Okay, let's find a few hundred thousand dollars out of the billions we spend just so we can finally look at these people?""
I think that when you use someone's supposedly healthy children as Exhibit A in an argument, and one of those children unexpectedly dies, you ought to mention that fact, with any caveats you think appropriate.
***
* Footnote: In one of those odd coincidences, this last link is to a review, on Dean's World, by the very same person who added all VAWA spending to the 'Porkbusters' site. Go figure.
holy smokes! Those doctors should have their licenses revoked. I mean, forget circumcision and vaccinations. It is insane to write off on this lady's ideas about AZT and AIDS. Good lord, AZT is "toxic"? No kidding! That's why it works on the little buggers. Antibiotics are "toxic". Chemotherapy is "toxic". Our own body makes "toxic" substances. Hell, it will PURPOSEFULLY introduce DNA copying errors (mutations) when it has no choice.
There is a tradeoff that should sometimes be made - some side effects in exchange for life. Warm and fuzzy homeopathy isn't a way around this.
Posted by: heet | September 25, 2005 at 06:48 PM
Horrible story, indeed.
I really don't think opposition to circumcising infant males belongs in the same category of crackpotitude as this woman's beliefs about HIV/AIDS, though. Millions of uncircumcised men seem to get along perfectly well, and it is, after all, a painful, invasive procedure performed on a nonconsenting subject. And in least some cases it is plausible that it significantly reduces sexual pleasure later in life -- indeed, I have seen it argued that this was one of the main historical reasons for its establishment in Judaism.
Posted by: mason | September 25, 2005 at 07:05 PM
Pure class:"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?""
Shorter: "Why couldn't God kill some poor person's kid?" Beautiful people, I'll bet.
I wonder if Dean Esmay believes that the outlier smokers who live to age 95 prove that smoking doesn't contribute to shortened lifespan. Then again, his whole shtick is "bravely defying conventional wisdom" ("It was good when women couldn't vote! Men were trying to protect them from the boredom of politics!"), so whatever.
Posted by: Phil | September 25, 2005 at 07:14 PM
(I am so bored by politics...
So very bored...
...)
Posted by: hilzoy | September 25, 2005 at 07:24 PM
If, as I hope, I wouldn't be able to do this, it would have to be because there are, somewhere, limits to my absent-mindedness: lines that separate the things I can forget from the things I can't.
Wonderful post, lots to think about. However, while forgetting about the child in the car for 8 hours is impossible to imagine for you, if you think about it as the father forgetting about doing one thing, and then, wrapped up in the rhythm of his day, doesn't think 'did I drop my kid off at daycare?', it becomes much more imaginable. We have a two story house, and we've been putting of getting a gate because even though we have a one year old, it is possible to close off the stairs. Thinking about the stairs, if I left the gate open, and 8 hours later, the child fell down the stairs, in some sense, we have a related situation to the father forgetting to drop off his child. Obviously not the same, but I can't tell you how many times I have woken up from a dead sleep to go check on something that somehow, made me worry about my daughters.
The note about daycare raises a flag against judgement. Encouraged by society to show everyone that you can be a great parent while still maintaining your level of consumption, which of course requires two working parents, these sorts of mishaps are inevitable.
Speaking for myself, after our first was born, my research dropped to barely perceptible. With the second, my research seemed to go into negative territory. When I do find time to do something, it was often rehashing something I had already done. Part of it can be attributed to my piss poor organizational abilities, but a lot of it is the level of concentration one has to put into thinking 'what are my kids doing now? What could they get into? What could they have just done that would cause problems later?'
I know that this sounds like I'm complaining about having kids, but I'm not, it is just that my threshhold for saying 'how could anyone do that?' is quite different now than it was back in the day.
Posted by: liberal japonicus | September 25, 2005 at 07:47 PM
lj: yes, but part of the reason why I said that was that when I first heard this story, I did turn some of the details over in my mind. To start with: you have to forget the kid for a long time. The husband did not remember it until way late -- I forget whether he was driving home when he remembered, or whether he got to the daycare center to pick the kid up, or what, but I believe it was a whole day. Remembering after an hour or so would probably have allowed the kid to survive.
You also have to imagine the absence of the sort of niggling sense you have that you've forgotten something, or any thought about your kid at all, to imagine not remembering. (And all this time, the most horrible part for me, the child crying and crying and no one coming--- ) (not even a stranger in the garage...) (sometimes having a vivid imagination is not a good thing.)
Posted by: hilzoy | September 25, 2005 at 07:57 PM
Thanks for the reply. Yes, it is not the same thing, but I have to say, a similar occurence happened to someone I know professionally, and their daughter died. So I have to ask myself, is it so far removed from the realm of possibility that I could do a similar thing? And I have to say no, if only to make me more cognizant of the fact that niggling doubts are not something you should habitually push out of your mind, but that you double check on. But if we do that (or at least if I were to do that) it would be possible that I never get anything done.
A more mundane example, I just went to Osaka for a testing for my martial art. When I got to take the night train, my teacher and the other two students weren't there. I called the mobile of one of the students, no answer. I began to step through everything. Did I get the wrong day? Did I misunderstand something? I'm about to call up my teacher's wife (it's 11 at night) when, they show up, having stopped at the 7-11 to pick up some snacks.
I'm thinking that niggling thoughts really need a trigger, and in the context of a person's work, it is quite possible that such a trigger never occurs. It reminds me of a wonderfully insightful passage in Ann Tyler's Accidental Tourist, where the main character's only son is murdered and his wife later leaves him and the character points out that the worst moments come not he is thinking about his son, but when he realizes suddenly that he hasn't thought of his son.
How niggling thoughts get into our mind, how we deal with them, which ones we attend to and which ones we don't are questions that I can't answer for myself let alone for other people, so I am a bit more reluctant to hold others responsible. (This is not to say that you are wrong, and its important to note that the public opprobium plays a large role in helping the 'correct niggling thought surface)
Posted by: liberal japonicus | September 25, 2005 at 08:36 PM
This is really well-timed, given the conversation that I had last night over dinner with one set of my in laws; out of the blue they mentioned that they didn't believe that HIV did not cause AIDs -- and related, what I now understand must have been, his-and-her rememberances of the 20-20 report. I was speechless; my wife, less so.
I won't bore with the details, but I do want to say this: I think that you (Hilzoy) pick up something really important in your discussion of "contrarianism" -- both the psychology at work and where that understandable psychology conflicts with morality. Excellent post.
Posted by: von | September 25, 2005 at 08:37 PM
that they didn't believe that HIV did not cause AIDs
Obviously, that should be "that they didn't believe that HIV caused AIDs."
The dangers of a half-undone revision.
Posted by: von | September 25, 2005 at 08:39 PM
Part of the problem here is that the cranks have at least a little bit of a point, or did have.
Is it still true that HIV positive means you tested positive for the presence of the antibody and not the virus?
In at least some of the people with the antibody won't their immune systems have defeated the virus?
Posted by: Frank | September 25, 2005 at 08:42 PM
Agree that the doctors in question should be forced to explain to a tribunal why their licenses shouldn't be revoked.
Professions more concerned to protect themselves than to practice their callings are, unfortunately, rife in America. The army, the medical profession, the bar ...
Let's put it this way: on the given facts, a country where these doctors are NOT shown the door is a country that has something very, very wrong with it.
Posted by: Anderson | September 25, 2005 at 08:49 PM
Frank: as I understand it, a bunch of tests for infectious diseases actually test for antibodies. A quick Google reveals that tests for anthrax, hepatitis, and Lyme Disease work this way; I stopped looking after those three. So this is not some strange and alarming feature of the HIV test; as I understand it, it's one of the standard forms that tests take.
I guess it's true that the antibodies could defeat the virus, but since one way to defeat a virus is to reduce its numbers to manageable levels, a test for the presence of the virus itself would have the same drawbacks.
Posted by: hilzoy | September 25, 2005 at 09:01 PM
Hilzoy- I didn't know that. Thanks
Posted by: Frank | September 25, 2005 at 09:04 PM
Frank: here is a more complete list.
von: thanks. -- As a person who can be very, um, enthusiastic about her views, I have always had a horror of this sort of thing, which may be why I think: since I see so many people whose views are explained less by the evidence than by their own favorite stance towards the world (e.g., contrarian), I will just adopt the stance of trying to be responsible and guided by the evidence. The opposite would be, for me, a particular danger.
Posted by: hilzoy | September 25, 2005 at 09:21 PM
I wonder what method would be effective in convincing people like this that they're being irrational, convincing them to give up their irrational standpoint. One encounters a lot of this kind of stubborn anti-empiricism on and about the internets, and it'd be handy to know at what point they cross the line of being irredeemable, what sort of effort one can expect it to require to really make any progress in talking to them, etc. All in all, really understanding why and how people end up endorsing such irrational views and how they can be helped.
Sometimes it's a deeply entrenched authoritarian or libertarian or Manichean worldview. So changing their opinions amounts to reconfiguring their worldview entirely. So there's a lot of psychological hangups that can interrupt the process of their reconsidering beliefs, and those hangups lead to the irrationality we see in people like Maggiore.
Posted by: pdf23ds | September 25, 2005 at 09:32 PM
I wonder what method would be effective in convincing people like this that they're being irrational, convincing them to give up their irrational standpoint.
Take it from me, there is no approach or method you can adopt. It requires a personal moment of clarity, that usually requires a byzantine assortment of psychological lock tumblers to click in place.
Posted by: 2shoes | September 25, 2005 at 09:37 PM
A note on antibody tests for HIV - IIRC, they can directly measure viral load now.
Posted by: Barry | September 25, 2005 at 10:17 PM
They can directly detect viral load using quantitative PCR (a technique whereby DNA can be amplified, the standard CSI technique for example typing DNA). Active HIV has an RNA genome, while latent HIV can be found as viral DNA integrated into the DNA of the infected cell). While antibodies can be immunizing against an infection, you are able to produce antibodies and still have a productive infection by a virus or bacteria. It's just how useful the antibodies are to the immune response. When people talk about "sero-converting" meaning testing positive for HIV, that phrase means you have been exposed and are no producing antibodies against the virus. After sero-conversion, and after the initial spike in viral load, viral levels tend to plummet because your body does OK in fighting the virus. HIV however infects cells of the immune system, so in essence it is killing the cells that help the body fight it. It is merely the fact that the virus can remain latent for so many years that allows people like this woman to take her and other's lives in their own hands. Essentially, she shouldn't have the right to make these types of choices for her children. Problem is, people don't want to see the state take over, but you see the same story all the time. In Utah, a boy was diagnosed with a small tongue tumor, which was removed, and even though they could not find any evidence of metastasis, this type of cancer almost always spreads, the family made a big stink about not wanting to put him on chemo, and everybody was trying to defend them, because the "boy didn't look sick". Sorry geniuses, that's not how things work. I have been quite alarmed at the Huffington Post on medical issues, they are taking the unscientific skeptical side to a number of things. It is very troubling.
Posted by: Pinko Punko | September 25, 2005 at 10:44 PM
Frank:
Is it still true that HIV positive means you tested positive for the presence of the antibody and not the virus?
In at least some of the people with the antibody won't their immune systems have defeated the virus?
Mostly answered above, but a few more points.
Testing for the antibody, while only inferential proof, is pretty damn certain since there is no other way you can get the antibody without having HIV in you first.
HIV is nearly impossible for the body to eliminate since it resides within the T cells of the body's immune system. Your body may knock down its numbers considerably, but it still harbors some presence in the T cells. In fact, the body typically does "defeat" the virus just like any other virus -- i.e., reduces it to low numbers so that it typically does not present a major problem. I don't think your body ever truly completely rids itself of any virus.
But HIV contnues to slowly kill off T-cells -- at some point, it reduces them to such a low number that you become highly vulnerable to other opportunistic infections. (Monitoring T-cell levels is critical to managing the health of HIV positive patients). In other words, you then have AIDS.
Posted by: dmbeaster | September 25, 2005 at 11:34 PM
Agreed, strongly, although I STILL experience sensation from the phantom foreskin.
hilzoy, your appreciation of the pain that could come from inadvertently killing one's own child is bang on (not surprised, me). It's what drives me to use my healthcare a bit more than I otherwise would, and my kids are healthy. Treating AIDS as a paradigm, though...you might as well treat gravity as a paradigm. I'm not sure which I hope for more: that Ms. Maggiore comes to her senses, or that she continues in relatively blissful ignorance. For her surviving child's sake, I choose the latter.
Posted by: Slartibartfast | September 25, 2005 at 11:36 PM
This post brings back memories of a particularly sordid thread on the old Tacitus, now thankfully lost in the archives. Anyone else remember whereof I speak?
Posted by: Anarch | September 25, 2005 at 11:44 PM
How parents decide to raise their children is no one else's business.
Period.
Free people will sometimes make poor decisions. The idea that you or the state know better than parents what is best for the parents' children is a very dangerous one, and one that should be rejected out of hand.
Posted by: felixrayman | September 25, 2005 at 11:52 PM
hilzoy, are you running a series of tests to see how much smoke you can make come out my ears?
I just yelled (as politely as I could) at Andrew Sullivan about _The Bell Curve_. Afterwards my wife said, "You're so flushed! You were really angry!" I don't care what AS thinks, but if he uses his platform to ignorantly push hateful ideas, well, that burns up. To me the worst thing about what you relate is not the death of the daughter - horrible as that was, stupid bad choices lead to awful consequences - but her nonchalance about the deadly risk of spreading her view. One has to consider, "What if I'm wrong?"
Off to douse my ears.
Posted by: rilkefan | September 25, 2005 at 11:55 PM
rilkefan:I was wondering how long it would take you to figure it out. Heh. Heh heh. Heh.
Posted by: hilzoy | September 26, 2005 at 12:01 AM
"I was wondering how long it would take you to figure it out."
Ah, so that was the test. Or maybe up another level? Or how many levels of meta up before smoke...
Posted by: rilkefan | September 26, 2005 at 12:10 AM
I deleted a long, meandering comment. What's left can be put in bullet points.
--I'm really, really glad that nobody here is advocating mandatory screenings for HIV.
--Skeptics of the HIV-AIDs connection seem to be gaining more media respectability these days; this summer, the NYPress published an article by an AIDs skeptic, and frankly, it was the first I had heard of what seems to be quite a contingent, if the subsequent letters to the editor can be taken as a measure.
--I hear that the drug-cocktail that HIV-positive people take to stave off AIDs has really unpleasant side-effects, as well as being expensive. Somebody facing a lifetime of these side-effects (which include near-permanent nausea in some cases, IIRC) might well start to embrace an alternative reality. I don't really see what realistic alternative to "suck it up and hope that medical researchers come up with miracles" HIV+ people can hope for: hence, the unrealistic alternatives.
--"Niggling doubts" often end up being the source of productive work in the academic community; many other jobs discourage such thinking (your earlier post on the gauntlet that the 82nd Airborne officer had to go through in order to address his "niggling doubts" is an extreme example). I can well imagine sitting at a desk and thinking, Did I remember to drop my kid off? Of course I did; I'm here now, I'm a responsible person, so of course I did what was necessary on my way here. Now I've got work to do, and it would be unproductive to indulge in such what-if fantasies. While I don't have any kids, I have convinced myself, somehow, that I'd done things I hadn't and vice versa.
--How screwed up is it that because people look healthy, they can be declared healthy? That's Hollywood logic, not medicine.
--I largely agree with Hilzoy's focus on those professionals who gave Maggiore a platform; these people should feel shame from the publicization of the harm they've enabled, but I won't hold my breath. Still, there seems to be an underground denialist movement that is just recently breaching into view. It would be counter-productive and possibly immoral to try to shame these people who already have faced something like a death sentence. So, what to do?
(Yes, I realize that my bullet points ended up like paragraphs. It was easier that way.)
Posted by: Jackmormon | September 26, 2005 at 12:24 AM
Jackmormon: "Still, there seems to be an underground denialist movement that is just recently breaching into view. It would be counter-productive and possibly immoral to try to shame these people who already have faced something like a death sentence. So, what to do?"
Could you explain why it would be immoral to shame these people? I might be misreading your statement, but I have trouble seeing immorality here. First of all, I doubt that anyone could shame parents like this the next time they go on TV advocating the joys of medical-science free parenting; they're denial seems impenetrable by now. However, if journalists who interviewed them on TV bothered to ask follow up questions like "so how does your dead kid feel about your brilliant 'AIDS doesn't exist' theory?" even if it did shame them or make them feel bad, other lives might be saved. It seems to me that saving other people's lives by honestly and frankly addressing the consequences of this insanity is greater moral good than protecting the feelings of the anti-scientists from having to acknowledge the consequences of their actions. Am I missing something here?
Posted by: Common Sense | September 26, 2005 at 01:46 AM
"Christine Maggiore: I did not want to expose my growing child to toxins during pregnancy."
Too bad she didn't admit that HIV is a toxin being exposed to her growing child during pregnancy. Ugh.
"Maggiore estimates that 50 HIV-positive women have come around to her point of view."
Double-ugh.
In a related topic. My knowledge of HIV medicine is out-of-date. Has there been any progress with the studies on the people who seem to be immune to the disease (repeated unsafe exposure with partners who have HIV but never become HIV+)? What about the research on the people who sero-convert and then never have symptoms. I have a friend who sero-converted about ten years ago and has never been on the cocktail, has very low viral load, and has never had the T-cell drop off. It probably isn't a weak version of the virus, because his boyfriend (whom he almost certainly caught it from) has had all the normal symptoms from time to time. I keep hoping the research in that area will prove fruitful, but I haven't heard much. Anyone have any good links on the most recent research?
Posted by: Sebastian Holsclaw | September 26, 2005 at 03:49 AM
Free people will sometimes make poor decisions. The idea that you or the state know better than parents what is best for the parents' children is a very dangerous one, and one that should be rejected out of hand
We aren't talking about raising kids as Scientologists, or homeschooling them, or teaching them to wear Saran Wrap instead of underwear. Denying adequate medical care to minor children is as -- and should be -- a crime just as much as beating them with a piece of cordwood would be, for the obvious reason that minor children do not have all the rights and responsibilities of adults, and are therefore nonconsenting partners in the decision to deny them care. These children still deserve the protections of their lives and liberties inherent in being citizens of their country, and thus we do not allow their parents to kill them through neglect any more than we would allow their parents to kill them through stabbing them in the heart.
Posted by: Phil | September 26, 2005 at 05:29 AM
Posted by: Abiola Lapite | September 26, 2005 at 07:43 AM
So children are chattel? That's the only way such an attitude makes sense. Otherwise one must admit that children have rights too, which they are unable to protect themselves. Thus, if the parents are the ones violating those rights - in this case the right to life itself - then someone else has to intervene. Yes, the idea that someone else knows better than the parents is a dangerous one, but it should not be rejected out of hand. What should be rejected out of hand is the attitude is that children are merely playthings for their parents.
Posted by: Platypus | September 26, 2005 at 08:02 AM
The idea that you or the state know better than parents what is best for the parents' children is a very dangerous one, and one that should be rejected out of hand
FRM has pretty consistently argued this (I recall this in another thread as well) Just to propose a thought experiment, what if something happened inside my head that told me to kill my children, would/should the state be prevented from acting to stop me? Assume all the stipulations to make sure that it is the state that has to act rather than a more distant relative, etc. I'm not trying to play gotcha, I just want to know how we draw that line.
Posted by: liberal japonicus | September 26, 2005 at 08:29 AM
So if I think torturing my children is in their best interests, then too bad, Mr. State?
B.s.
Every state in the union should adopt laws providing for a physician's duty to report to Child Welfare a parent who's grossly neglecting his/her child's health, for investigation & possible termination of parental rights.
Anything else equates children with pets, or worse. It's appalling enough as it is that any loser can have kids & suddenly have sovereign rights to destroy the children's lives; some obvious limits are worth implementing.
(BIG hobbyhorse of mine, cantcha tell?)
Posted by: Anderson | September 26, 2005 at 10:56 AM
I'm sympathetic to felixrayman's view, though not to the extent of total agreement. Allowing the state to intervene between parent and child has serious consequences. I'm not a fan of slippery slope arguments, but there is still a very real danger that the child effectively becomes a ward of the state with the parent reduced to the role of caregiver.
If the state is given authority to take medical decisions out of the hands of parents there will inevitably be errors and probably abuses. The converse (felixrayman's view) also involves errors and abuses, as so clearly illustrated in this post. I believe the line between parental control and state oversight should be drawn in a way that leaves the parents the maximum amount of autonomy in choosing how to raise their child, in full knowledge that some children will suffer as a result. The choice is not whether children will suffer needlessly: it is a matter of which children suffer and who is the agent causing the suffering. Having the state be the agent of needless suffering involves everyone, and subjects all children to risks based on fads or politically motivated pseudoscience (if you don't think pseudoscience can make headway in government I refer you to the Intelligent Design debate). Given the nature and limitations of human beings it is better to err on the side of parental control.
All of this obviously implies drawing a line somewhere between parental and state authority, and felixrayman has a tidy way to draw that line. I think there are some things so well established that there is not reasonable doubt that they ought to be required if beneficial and forbidden if harmful (violence for example). My preference is to draw that line at a point where it is absolutely unambiguous that the actions being forbidden or compelled are disastrously harmful to the child. I would draw that line in a way that leaves medical decision making up to the parents, including decisions such as denial of appropriate healthcare resulting in the death of the child. That probably seems quite heartless, but if you consider the possibility of the state compelling parents to do something harmful the potential for damage is much, much, greater and though the probability of harm to a given child is lower, the numbers affected are much larger: the risk is the probability multiplied by the effect: 1% chance of killing 100 kids is the same risk as 100% chance of killing one kid. It would be straightforward for a hysteria-driven overreaction to mandate 'preventive' vaccination against a bioweapons attack: Since all vaccination programs carry some risk of harm, requiring all kids in the country to be vaccinated could easily kill thousands or tens of thousands.
Posted by: togolosh | September 26, 2005 at 11:47 AM
I am going to have nightmares about that kid in the car seat. And the father FINDING her!
As for the revolting Ms. Maggiore and her cohorts, I agree with hilzoy's analysis and would add only that Maggiore and the others involved seem to lack a fundamental connection with reality. I don't mean that they're mentally ill, just that they have a very dangerous way of thinking that is all too common: at base, they just plain don't believe in checking their ideas against reality.
I see this in an awful lot of people, including some close friends, who earnestly and sincerely base their notions about the world in some ideology or religion no matter what that leads them to. They are intelligent, they think clearly and well, it's just that they aren't worried when reality contradicts their ideas. The axioms are right, it is the facts that are biased (in the Daily Show's immortal phrase).
I blame the teachers. History shows that respect for the facts was something humanity learned painfully and at great expense over a very long time. We could, however, instill it in our children at little cost. Instead, we have squandered our heritage of empiricism.
Posted by: trilobite | September 26, 2005 at 12:12 PM
togolosh,
On the whole I agree with your post. But regarding the specific vaccination scenario, the state may have a valid interest in compelling all people (children and adult) in taking this or that vaccination because of a suspected bioterrorist (or even natural pandemic) threat. The reason is that people who do not take the vaccine and subsequently contract the disease where they would not have otherwise put other people, even those that have taken the vaccine (depending on its effectiveness) at risk. So the individual act of choosing to not take the vaccine leads to harm for a number of other people. The individually rational choice is against the interests of the whole group.
But this reasoning doesn't apply, and your point holds, for non-communicable disease, and probably for sexually transmitted diseases or other diseases that are transmitted through unusual and specfic channels. And, of course, your reasoning still applies for individual matters of philosophy or religion, including child discipline and education.
Though on the matter of homeschooling, I think a line should be drawn where it's suspected that the parent is incapable, because of some physical or mental debilitation, of giving their children even a half-decent education. I think there should also be a line drawn in cases where there is evidently virtually no education taking place, through any means; for example, where a twelve-year-old child with no serious learning problems has not yet been taught to read. The goal is to make sure that children aren't in danger of receiving no education at all. This will cause them a huge amount of harm throughout the rest of their life.
As for the specific treatement in question, the HIV treatement, togolosh thinks that we should weigh the potential harm from poor government policy against the potential harm from loony parents. He concludes that this is almost certainly in favor of the parents. I would would withold judgement, though, until I see some information about the preportion of loony parents in the population.
Posted by: pdf23ds | September 26, 2005 at 12:35 PM
A few random comments about how HIV is measured: The screening and confirmatory tests for the diagnosis of HIV are antibody tests. The screening test occasionally gives false positives, hence the need for the confirmatory test. These tests would probably remain positive for life, even if the person in question was cured of HIV because of the presence of memory cells, long-lived B-cells which carry antibody against any infection the body has previously encountered, in the circulation.
There is a test for the virus itself, the viral load assay, which gives a quantitative measurement of the amount of virus in the body. Unfortunately, a non-detectible viral load is not the same thing as zero live virus in the body. Many people on HAART (therapy) have a non-detectible viral load, but relapse eventually when their virus becomes resistant to the meds.
As far as I know, there is no documented cases of people being able to completely remove the virus from their bodies, with or without treatment, although weaker forms of the virus and CCR mutations can result in very long healthy life expectancies in some individuals. I'm not sure how one could document a cure. 20 or 30 years of non-detectible viral loads and no evidence of immune dysfunction in a person with HIV antibodies not on HAART would be fairly convincing, but you probably still wouldn't want this person giving blood: some viruses can lie dormant or semi-suppressed for very long periods of time. For example, varicella/zoster virus, which causes chicken pox on first infection then lies dormant in the nervous system until the immune system is weakened, at which point it comes out as shingles.
Posted by: Dianne | September 26, 2005 at 12:52 PM
trilobite,
I think "fundamentalism" is a good description both of the historical tendency and of the specific instances of what you describe. Perhaps there are also other ways of looking at it.
Posted by: pdf23ds | September 26, 2005 at 12:56 PM
I believe the line between parental control and state oversight should be drawn in a way that leaves the parents the maximum amount of autonomy in choosing how to raise their child, in full knowledge that some children will suffer as a result.
True & fine, but what about situations where the child won't just suffer, but die?
Situations directly jeopardizing the life of the child should be exceptions to the general deference to parental wishes.
Posted by: Anderson | September 26, 2005 at 01:30 PM
Anderson - I'm including cases where death is a result. My position can be roughly summarized as a preference for letting parents kill their children over empowering government to take actions which kill children. The major problem with my view is that is hard if not impossible to come up with a rigorous analysis of probabilities and consequences that will allow the line to be drawn at the optimal location (minimizing child suffering regardless of who is responsible). Given this knowledge problem I prefer to err on the side of parental authority.
Posted by: togolosh | September 26, 2005 at 01:36 PM
Looks like a form of demanding impossible perfection to me. Just because it might not yield a perfectly precise and accurate result is no reason to abandon quantitative analysis entirely. It's entirely possible to estimate the number of deaths from each course of action well enough to make at least an orders-of-magnitude comparison. If the likely outcome of failure to vaccinate is on the order of ten or a hundred times as many deaths, isn't that enough to override your preference for absolute parental authority? You're basing a general conclusion on specific numbers in your previous post that have no connection whatsoever to reality, and thus that conclusion is invalid. If the risks were really equal then maybe your point would be compelling, but they're not.
Posted by: Platypus | September 26, 2005 at 02:01 PM
the father FINDING her!
That's the part that gives me the cold nausea. True confessions - I once drove to the supermarket with my daughter in the carseat. I took her with because she was being fussy and her mom was getting stressed, and the car usually chills her out. True to form, she conks out two minutes into the five minute drive. I pull into the parking lot of the Safeway, hop out of the car, lock the door, and stride purposefully toward the entrance, looking for a shopping cart. It is only when I get three steps from the entrance and at least fifty yards from my car, and see the little red flipdown seat in the cart, that it dawned on me - "You have a baby daughter and she is alone in your car, which you can't see from where you are standing right now." My entire body filled with frozen acid and I ran back into the parking lot, to the car, where of course my daughter slept on, unawares. I opened the door, picked her up, and went on with the shopping, full of that "barely avoided a hideous car accident" vibrato singing through my nerves.
Would I forget all day long? No. No! Of course not! Of course not. I mean....I mean I hope not. God, I hope not. If I came back to my car after a whole day, and saw the car seat, and...oh, I feel sick, I can't think about this anymore.
Posted by: st | September 26, 2005 at 03:41 PM
Exactly, st. That's the part that still makes my blood run cold. Even though both my kids can get out of the car by themselves.
Which, no. Nono.
Posted by: Slartibartfast | September 26, 2005 at 03:49 PM
st, slarti: Me too--and I don't even have a car.
Posted by: Dianne | September 26, 2005 at 03:59 PM
Just remembering what I got into as a kid...26 stitches, right wrist, 5 years old...10 stitches, face, 4 years old. Amazing, that I lived at all.
Posted by: Slartibartfast | September 26, 2005 at 04:07 PM
Would I forget all day long? No. No! Of course not! Of course not. I mean....I mean I hope not. God, I hope not. If I came back to my car after a whole day, and saw the car seat, and...oh, I feel sick, I can't think about this anymore.
Isn't the wierdo biological change that is forced unto you when have successfully bred strange? Before parenthood, I used to see stories about parents jumping down into a well after their child has fallen in and then subsequently drowning as being odd, given that they had zero chance of doing otherwise. After having children of my own, all I could think of was "Poor sap, they had no choice."
And then, when you have had a close call of your own (for example, my three year old daughter suddenly taking off down a slippery ice path beside the raging Yukon River despite our screams, and stopping only just short of a plunge into it), for years there are instances when you lie in bed at night in a cold sweat, jolted into hyper-alertness by the memory.
Cursed biology. I can't even watch the news anymore if there a crying child on it.
Posted by: double-plus-ungood | September 26, 2005 at 04:08 PM
www.nowthatsfuckedup.com is a site that originally was for sex porn but has morphed into a place for American soldiers to post pictues of dead and dying Iraqis followed by gleeful sociopathic quips. The posters didn't need to be trained in barbaric behavior. They seem capable of it on their own.
Posted by: lily | September 26, 2005 at 04:32 PM
There are a couple or three of things that cause this kind of problem:
a) the "Cry Wolf" effect from the second-hand smoke, amalgam tooth fillings, types that seem to assert that you will live forever if you are constantly paranoid about vaccinations, etc.
b) the way hospitals give needless tests and procedures toold people on Medicare, when there is money to be made, but will deny benefits to folks who have long-term incurable problems.
c) the legitimate right of pretty normal adults (For instance, Christian Scientists who pretty much ran the K-8 school my kids attended) to not submit to medical intervention for themselves, versus denying medical attention to kids. (My kid's school was good about responding in a practical way to medical emergencies.
I personally believe that if you are OLD, you are perfectly within your rights to refuse medical treatment. Especially for Alzheimers sufferors for whom being moved to a hospital or nursing home is a more frightening prospect than dying, or for incurable (multiple myeloma) cancer victims like my mom, who died rather quickly and didn't have to face the helplessness and loss of dignity that too many people go through.
It is too easy to confuse your personal beliefs with your responsibility to protect your children from major threats like bad diseases. The other extreme is to identify with yours kids so much that you might interfere with a teacher or coach just because your kids are not excelling, but are just sort of mediocre or kind of normal.
Posted by: DaveC | September 27, 2005 at 03:38 AM
Anderson - I'm including cases where death is a result. My position can be roughly summarized as a preference for letting parents kill their children over empowering government to take actions which kill children.
Kid from Jehova's witnesses has been in a car accident and needs a blood transfusion. With the transfusion she will be fine, without it she wil die... (these cases happen).
I want the government to become warden of the child for the duration of the treatment. It is hard enough to let an adult die in a case like that, but society should protect the children against obvious dangers.
About the forgotten kid: it is an abysmal story but I can see how that can happen. Especially when you are in a working environment and immediately occupied. Horrendous to think about it, brrrr....
Posted by: dutchmarbel | September 27, 2005 at 05:54 AM
DaveC: I agree on the potential for confusing an adult's right to make his or her own decisions about medical care with the right to decide on the medical care for one's children. In fact, the law basically supports the right of any competent adult to refuse treatment, and (imho) it's right to do so. But kids are different. The law (again, rightly, according to me) gives parents very wide latitude here, on the assumption that parents will generally decide in their children's best interests, and that they are in general best placed to decide what those are. The exceptions come when a failure to provide treatment basically constitutes child abuse. As, imho, this did.
Posted by: hilzoy | September 27, 2005 at 10:23 AM
Hilzoy, that story made me sick on so many levels - not least of which was realizing that Peter Duesberg is still an influential figure, and not just in South Africa. Several posters here blamed Christine Maggiore for making medical decisions without sufficient knowledge - well, be that as it may, I blame people like Duesberg much more for using their credentials to reinforce the ignorance of people like Maggiore.
Duesberg can't be a stupid man; his work as a virologist was serious and significant - in the 1980s. And in the 1980s, he decided that what he'd heard about AIDS didn't make sense to him, that it sounded more like a toxic effect of recreational drugs... and then he decided to stick with that view forever. I've never seen Duesberg acknowledge any of what has been discovered about HIV since then, or the related progress in virology, immunology, and molecular biology. He just crunches the same epidemiological numbers again and again, and crows over the same alleged contradictions that are really just misunderstandings of basic terms. I just read a paper he co-authored in 2003, and he's still pretending not to have heard about the last 10 years of HIV pathogenicity research, and still making statistical errors that would make a first-year med student blush. When I've heard him interviewed, his bitter smugness made me cringe; I think he's given up on doing science, that he's decided to settle for being thought well of by people like Maggiore who can't understand his claims well enough to judge them.
Sorry for the rant, it's just... Duesberg killed that woman's child as much as she did, but she's just dumb; he's evil.
Posted by: EliB | October 01, 2005 at 02:49 AM
I note without taking a position on adults refusing medical aid that Rivka of the Otters argues with force that almost no one refuses treatment unless they are suffering from depression.
Posted by: rilkefan | October 01, 2005 at 03:40 AM
I find that if comment spam isn't rigorously deleted, it encourages more people to post it, myself.
I'm also amused at the irony that when I try to post this comment, I get this response: "Invalid email address '[email protected] '"
Posted by: Gary Farber | May 17, 2007 at 01:56 AM
There are still people out there assuming the term of “good parents” to those people who tries to make true every little spoiled thing their children ask but I think these are just the people who don’t know how to deal with a child, and of course, how to take care of it. This is how, sometimes, they think spoiling them is enough, and you get to read this kind of stories in LA Times.
Posted by: Drug Rehab | April 27, 2008 at 08:00 PM
could you shorten it down for me
WHAT HAPPENED?
WHEN?
WHY?
HOW MANY PEOPLE SUFFERED?
Posted by: buffy | May 29, 2008 at 03:18 PM
I THINK THAT IS STUPID THING TO MAKE PEOPLE SCARED AND I WANT TO GOVI YOU ADVISE THAT YOU HAVE TO DO SOMA MORE TO MAKE PEOPLE SCARE. SO, PLEASE THINK ON THAT .
Posted by: SEEMA | January 15, 2009 at 01:30 AM