Science refusal kils child?

September 28, 2005 3:41 PM

Because some people believe that HIV does not cause AIDS, some mothers have decided not only to refuse AIDS testing, but to give birth and breastfeed their child while taking no anti-HIV medicines. Unfortunately this, along with trusting non-licensed medical practitioners and distrusting the medical establishment, has apparently caused the death of a 3 year old girl.
posted by Kickstart70 (65 comments total)

.

I can understand that when that test comes back with the wrong result, people will clutch at any straw to enable them to stay in denial.

I wonder if these people will ever be psychologically capable of facing up to the fact that they got it wrong, and that their errors have killed people?

Meanwhile, in Africa, 6000 people die every day of AIDS, and for the vast majority, no anti-retroviral medication is available, simply because of cost. The economic system is as much the cause of death as AIDS.
posted by cleardawn at 4:09 PM on September 28, 2005

Wait a minute -- Maggiore is 49 now and the dead child is 3. That means she was 45-46 when she got pregnant. I think there's like a 5% annual chance of getting pregnant at that age, which means that Maggiore may have deliberately tried to get pregnant, maybe even taken fertility drugs...knowing she was HIV positive. Ugh.
posted by footnote at 4:25 PM on September 28, 2005

Isn't this just proof that natural selection still operates on humans?
posted by spazzm at 4:44 PM on September 28, 2005

spazzm: You mean the death of the child whose mother was an idiot? Not sure how letting the mother stay alive and possible having more children counts as natural selection.
posted by Kickstart70 at 4:48 PM on September 28, 2005

I was just reading more pages from the first link. Some of the people listed believe that AIDS is caused by "severe stress".

So, I wonder if IT workers and the soldiers coming back from Iraq have a higher incidence of AIDS than the regular population. Somehow I doubt it.
posted by Kickstart70 at 4:50 PM on September 28, 2005

Yeah, footnote, that's what it smells like. It seems to me that she was so absolutely convinced that she was right that she chose to bear another child under these conditions in order to show the world the strength of her convictions, all the while being absolutely positive that her kid wouldn't get AIDS and die.

Now what (to her) would be the inconceivable result has happened: se is wrong and her child is dead. But she's holding fast to the lock-step of the ideologue, and she doesn't really seem all that broken up about her child's death.

I suspect that it's because she is not allowing herself to consciously reach the conclusion that her stubbornness, clinging to an ideology that has been repeatedly shown to be false, has killed the last child she is likely ever to bear. Nobody else caused her daughter's death. Only Maggione did.

This moron needs a sledgehammer to the cervix. Repeatedly.
posted by solid-one-love at 4:52 PM on September 28, 2005

Nowhere in the second link does the author state she doesn't believe that HIV causes AIDS. Nowhere in the last link does it state that the child who died had AIDS, or even that she was HIV positive.

I'm not saying I'd make the same decisions as these people, but your post seems inflammatory to me.
posted by Specklet at 4:59 PM on September 28, 2005

Now, with the death of Eliza Jane, authorities say they are poised to act.

Great.

This is certainly sad, but I think that the article (and the FPP) conflates two different issues. The first is the question of what causes AIDS. People who contend that HIV does not cause Aids are just whack jobs. They belong in the same camp (although they probably think of themselves quite differently) as people who support intelligent design. They've developed an overvalued idea that can be supported only by faith because science contradicts it in every respect. Unfortunately (or fortunately, I'm really not sure which) the body deals with HIV relatively well and so it's possible for these people to delude themselves for a long time before the chickens come home to roust.

The other issue is the issue of HIV testing. This is a bit confused in the present instance because we're talking about a child, but the stigma against HIV is still very much alive and well and too often people get tested only to find out that they are shunned by even their loved ones when they reveal their status. People are made to eat on paper plates by their parents; students are told they have to leave college (by college officials); folks lose their jobs. All of this stuff happens every day. Compelled testing may seem like a good idea, but too often people are tested and after telling one person, their whole community finds out. So, there is a downside to getting tested.

In this case, of course, I would have hoped that some of the same laws that compel Christian Scientists to treat their children could have been brought to bear. Perhaps testing shouldn't have been compelled, but certainly after the child became sick she should have been tested and treated.
posted by OmieWise at 5:04 PM on September 28, 2005

footnote writes "which means that Maggiore may have deliberately tried to get pregnant, maybe even taken fertility drugs...knowing she was HIV positive. Ugh."

The issue is in refusing to mitigate the risk, not in choosing to get pregnant when she knew she was HIV positive. Properly treated, the risk of a baby getting HIV from her mother is 1-8%, with a good treatment regimen putting it closer to 1%. The chances of other birth defects after age 40 are much higher than that.

specklet - I think this was an imperfectly designed FPP, because the early links are kind of introductory and perhaps misleading because of their age (HIV science moves fast, and Kathleen Tyson, the mom from the second link, might not make the same choices today). The last link is the meat, though, and from the first page, says: "The cause [of the girl's death], according to a Sept. 15 report by the Los Angeles County coroner, was AIDS-related pneumonia." In other words, non-community acquired PCP pneumonia, and AIDS defining condition. I would assume that there was also an HIV test since this was a coroner's report, and one does not have AIDS-related pneumonia if one does not have HIV and AIDS.
posted by OmieWise at 5:13 PM on September 28, 2005

Specklet -- If you google "Felix Tyson," you'll see that his case described in the second link was embraced by the AIDS denial movement, and some suggestions that the mother herself doesn't believe HIV causes AIDs. (I couldn't find any recent updates about whether Felix is still alive...) As for Maggiore, the last article linked does say the child died of AIDS-related pneumonia. In all, I don't think this post is inflamatory enough, at least with respect to Maggiore. She's not just one mother who something unfortunate happened to, but rather one of the key figures in the AIDS denial movement.
posted by footnote at 5:21 PM on September 28, 2005

In other words, non-community acquired PCP pneumonia, and AIDS defining condition.

this should read "*an* Aids defining condition." The way I mistyped it makes no sense.
posted by OmieWise at 5:29 PM on September 28, 2005

The issue is in refusing to mitigate the risk

Agreed
posted by footnote at 5:32 PM on September 28, 2005

I don't know if the linked articles mention it but there were three doctors involved with the care of the dead child. None of them insisted on a HIV test. The mother can be a nut case for the rest of her life if she wants to be but she should not be allowed to endanger her child's life and the doctors involved in the child's care should taken action.
posted by rdr at 5:46 PM on September 28, 2005

What I'm curious about is where this woman got her info? People just don't start to spontaneously believe this nonsense. Was someone feeding her these lies and encouraging her to conceive without treating her condition? Did someone encourage her not to treat her child for HIV or AIDS?

It's like someone just spontaneously deiding to be a scientologist. It doesn't happen.
posted by shmegegge at 5:46 PM on September 28, 2005

It's well known that the administration of AZT right after birth has caused a collapse in infant deaths due to AIDS. What the administration of AZT does is prevent the HIV virus from being transmitted to the infant. In fact, NY State had a policy that handled HIV-positive mothers in this manner: all babies were tested, but since test results could not be released to the patient unless the patient specifically asked for the test in the first place, the mothers were not told of the results. To the "testing for HIV without written consent is a war crime" crowd, this was considered very offensive, since finding out that an infant carried HIV antibodies implies that the mother is infected. The infants were administered AZT, and the rate of mother-to-child HIV transmission dramatically fell (source).

Compelled testing may seem like a good idea, but too often people are tested and after telling one person, their whole community finds out. So, there is a downside to getting tested.

Um, this sounds to me like there's a downside to telling people the results of a test. That's what medical privacy is all about. Fortunately, it turns out that HIV is uncommon among non-drug-using heterosexuals with non-drug-using sexual partners in the United States, so there wasn't a national emergency. The problem is that refusing to nip HIV outbreaks in the bud by using the same public health strategies as syphilis and other STDs causes the disease to fester in some communities. It's been 25 years since the emergence of AIDS. The idea of trying to hide information about the infection as it spreads is, quite simply, crazy.
posted by deanc at 5:58 PM on September 28, 2005

I want you all to remember this the next time anyone thinks about defending homeopathy, herbal remedies, chiropractic "doctors," and naturopaths.

Ignorance kills.
posted by Optimus Chyme at 5:59 PM on September 28, 2005

This is a Long Day's Journey into Night played out in real life. It's tragedy in the real sense, death brought about by vanity.

Ignorance kills There's a homeopathic clinic for HIV/AIDS in my neighborhood. Not complementary care, but primary care. I think they should be in jail.
posted by gesamtkunstwerk at 6:09 PM on September 28, 2005

I don't know if the linked articles mention it but there were three doctors involved with the care of the dead child. None of them insisted on a HIV test.

With any other kinds of diseases (and checkups), a doctor says, "I'm ordering some tests" as a matter of routine, sends off your samples of bodily fluids and gets the results, whether it's a test for lymphoma or whether it's a test for herpes. However, HIV is a special case. A doctor can't simply see a patient, examine the symptoms, and order an HIV test. The doctor needs written permission from the patient or the patient's guardian to do so. THe patient's guardian, in this case, obviously saw no point to testing for HIV.
posted by deanc at 6:11 PM on September 28, 2005

I want you all to remember this the next time anyone thinks about defending homeopathy, herbal remedies, chiropractic "doctors," and naturopaths.

It's hard to argue with that for life-threatening illnesses. However, for discomfort and other non-critical problems, when traditional means do not provide relief (or you can't afford them), why not experiment with alternative medicines? Worst case, they do nothing, and in some cases (in my experience, specific herbal remedies and chiropractors) they actually provide relief, either directly or through the placebo effect.
posted by davejay at 6:16 PM on September 28, 2005

deanc writes "The idea of trying to hide information about the infection as it spreads is, quite simply, crazy."

It may be crazy, but all of the examples I provided are from my own practice with HIV positive people and have all occurred in the past 3 years. There are many more besides. Simply dismissing the concerns of people who are afraid that mandatory tests will adversely affect their lives is not likely to win converts to the idea of testing.

As to the doctors, what they should have done was report the woman to child protective services if they thought that the girl might have had HIV and the mother refused testing. (I understand that this second paragraph conflicts with the one above it. It's a complex issue.)
posted by OmieWise at 6:24 PM on September 28, 2005

AIDS awareness? U.S. Launches AIDS-Awareness Campaign In Botswana: 'You All Have AIDS,' Says U.S.
posted by Balisong at 6:37 PM on September 28, 2005

Kickstart70:"You mean the death of the child whose mother was an idiot? Not sure how letting the mother stay alive and possible having more children counts as natural selection."

It works if we, like Dawkins, view evolution as selection of genes, not individuals.
The baby shared 50% of its genes with the mother, therefore there is now a 50% chance that there is one less individual in the world carrying the gene(s) that encode for this particular kind of stupidity.

Finally, having babies takes time and effort, so the risk of the mother procreating (and passing her genes on) diminishes with each one of her babies she kills. Especially since she can't have many child-bearing years left considering the fact that she's 49 and has AIDS.
posted by spazzm at 6:38 PM on September 28, 2005

Simply dismissing the concerns of people who are afraid that mandatory tests will adversely affect their lives is not likely to win converts to the idea of testing.

Well, I don't necessarily think AIDS testing should be mandatory, merely that it should be treated like any other medical test. Syphilis and herpes testing aren't "mandatory," but doctors order them all the time, and when the test is positive, public health officials try to trace the path of the outbreak. And certainly, if one is worried about being stigmatized, syphilis and herpes aren't exactly conditions people are proud of, which is why, invariably, this is kept private. I guess I just have trouble trying to get my head around why, in this day and age, we treat HIV as though it were a "special case" when it comes to medical conditions that physicians may test for.
posted by deanc at 6:46 PM on September 28, 2005

What I'm curious about is where this woman got her info? People just don't start to spontaneously believe this nonsense. Was someone feeding her these lies and encouraging her to conceive without treating her condition? Did someone encourage her not to treat her child for HIV or AIDS?
From the article.

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?"

If AIDS were spreading faster, I would support manditory testing. If a disease really threatens everyone, then it needs to be stopped. But, in the US at least, it's not spreading that quickly.
posted by delmoi at 6:50 PM on September 28, 2005

also from the article:

Maggiore [the mom] 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.

Oh my god. Well, if its any consolation, she'll probably be dead soon herself.
posted by delmoi at 6:54 PM on September 28, 2005

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.

!!!!!!!!!!!!!?
posted by delmoi at 6:56 PM on September 28, 2005

Compelled testing may seem like a good idea

not a good idea, in my honest opinion. discrimination is alive and well in every nook and cranny.

my understanding is that if an HIV positive mother gives birth, there is about a 25% chance the baby will be HIV positive. with the administartion of AZT seroconversion diminishes to less than 10%. so, there are no guarantees, but yes, one can mitigate the situation somewhat. since the mother tried AZT herself and could not tolerate the medicine, and hence, believes it to be toxic, i think it is her business (and not the government) not to want to force her baby to take AZT or any other AIDS medications. it may be a poor choice, but it is her choice.

in massachusetts, i'm almost certain that you cannot administer an HIV test to a dead person because the dead person cannot give written consent. somebody in public health told me that about 8 years ago.
posted by brandz at 7:35 PM on September 28, 2005

It's fitting that she appeared on the cover of Mothering magazine. That rag has been a megaphone for the anti-immunization, anti-orthodox-medicine crowd. This woman, like the movement she belongs to, is a menace.
posted by QuietDesperation at 8:37 PM on September 28, 2005

I want you all to remember this the next time anyone thinks about defending homeopathy, herbal remedies, chiropractic "doctors'...

Wow.
HIV = Backache?
HIV = Exhaustion?
HIV = Congestion?

And I wasn't even aware of the epidemic...
posted by NationalKato at 8:54 PM on September 28, 2005

Worst case, they do nothing,

Except for the lady in my practice that collapsed and died from adrenal failure because she decided to stop the prednisone her naturopath decided she needed for fatigue. Or the one that keeps telling my 48 year-old patient, whose blood pressure routinely spikes over 180, that she needs an endocrine cleanse to cure her blood pressure and not the medication we keep telling her she needs so her three college age daughters don't piss away their lives caring for a stroke victim. No, Naturopaths are not benign. I used to think so. Until I found that their "Board" that should be watching over them, is, of course, comprised of like-minded dimwits.

But intelligent people do stupid shit all the time. I'm heartbroken over the death of this child but hope the pain of her loss haunts her mother into insanity.
posted by docpops at 8:58 PM on September 28, 2005 [1 favorite]

deanc - all babies were tested,

Hmm, isn't the standard test for HIV actually a test for antibodies against the virus (hence, seropositivity - and if a successful vaccine was created, people who received and responded to the vaccine would 'test' as positive for HIV)?

Antibodies from the mother can make it into the fetus/newborn and it's possible that a newborn immune system is incapable of producing their own antibodies against HIV.

I'm sure a google/pubmed search may clarify things for me, but does anyone know if these types of questions are being addressed or even baseless?
posted by PurplePorpoise at 8:59 PM on September 28, 2005

The economic system is as much the cause of death as AIDS.
posted by cleardawn at 7:09 PM EST on September 28 [!]

The economic system is almost as much the cause as willful ignorance by rich, privileged, so-called "educated" people.

Bush's program of abstinence education, independent of HIV infection rates, fails miserably. This is statistical fact. Education about birth control has been demonstrated to work successfully to reduce HIV and other STD rates in Africa and SE Asia. This, too, is statistical fact. What worsens this is knowingly witholding funding, resources and knowledge to people in this rough situation.

I don't blame people who don't know better because they can't. This mother is not nearly as much at fault as other people with the power to make a difference. I blame people like Bush and his cronies who don't know better because they don't want to, despite being in a position of privilege to access knowledge and learning skills unavailable to nearly everyone else on the planet.
posted by Rothko at 9:25 PM on September 28, 2005

I don't think people are understanding what I'm saying. The doctors were aware that the mother was HIV positive. They were medical doctors, not homeopaths. They knew there was a chance that the child was HIV positive.

Dr. Fleiss gave assurances to the Department of Child and Family Services that led the caseworker away from forcing a test.

From the article...
" Fleiss, who said he could be "convinced either way" on whether HIV causes AIDS, ..."

You see the mother is a nut case but the doctors are... I can't even think of words to describe what they did.
posted by rdr at 9:55 PM on September 28, 2005

Should I wish this woman a slow, agonizing death?
posted by dhartung at 10:25 PM on September 28, 2005

You don't have to, dhartung. You don't have to.
posted by zoogleplex at 10:49 PM on September 28, 2005

Incidentally, one of the more prominent academics claiming that HIV does not cause AIDS, Serge Lang, died a couple of weeks ago at the age of 78. No cause of death given, nor surviving relatives listed.
posted by Aknaton at 11:11 PM on September 28, 2005

Well, fuck.

I once posted a rather poorly-researched and hysteric FPP regarding accusations that children in the NYC foster care system were being used as lab rats for AIDS drugs. One of the articles I looked at involved this lady talking about how successful her "alternative" methods of caring for her kids were. I kind of assumed she would be, like, trying actually effective ways of looking after her children by now.

Fuck.
posted by schroedinger at 11:31 PM on September 28, 2005

I'm sorry, is there some point in the search for knowledge where you just say "Oh, well that makes me feel better. I'll stop right here and assume you're right." I mean, did she even consider going to, I don't know, any of several MILLION other doctors for a second through millionth opinion on the matter?!

At least for some intelligent discussion to determine whether or not that fucking quack was reliable?!

Not only that, but then she starts an organization to convince other women of this!

Their slogan should be "you too can believe whatever you want!"
posted by shmegegge at 1:21 AM on September 29, 2005

This makes me blind with rage.

HIV causes AIDS!!! I saw it with my own eyes in Uganda!!!
Mothers breastfeeding their babies passing on the virus to them. My own mother administering AZT to pregnant women and babies, and then seeing those babies escape the virus.

Kathleen Tyson does not deserve to keep her son. She's going to kill him.
posted by tomcosgrave at 3:42 AM on September 29, 2005

deanc writes "And certainly, if one is worried about being stigmatized, syphilis and herpes aren't exactly conditions people are proud of, which is why, invariably, this is kept private. I guess I just have trouble trying to get my head around why, in this day and age, we treat HIV as though it were a 'special case' when it comes to medical conditions that physicians may test for."

Because in the case of herpes the outbreaks are intermittent, and in the case of syphillis, it's curable. If you read pre-penicillin novels in which people have syphillis, there is indeed a stigma attached to it. (See J. Ward's partner in The 42nd Parallel.) I'm not trying to harp on this, but HIV really is different, and likely to remain that way for a long time.

PurplePorpoise writes "Hmm, isn't the standard test for HIV actually a test for antibodies against the virus"

You understanding is correct. When a baby is born for several months it has its mother's antibodies, which is why privacy advocates object to babies being tested manditorially (?). If a neonate is positive, it means the mother is positive, but not necessarily that the baby has HIV. You can still treat it though.
posted by OmieWise at 4:31 AM on September 29, 2005

Slightly offtopic, but because I hate the fact this woman's ridiculous organization has some popular support: Foo Figters support Alive & Well.
posted by PantsOfSCIENCE at 6:00 AM on September 29, 2005

The way to combat discrimination against AIDS by combating the discrimination itself, not by helping people keep their heads in the sand...
posted by footnote at 7:28 AM on September 29, 2005

wow, lots of black and white hindsight here. It's an easy judgement to cast, I guess.

I wouldn't make the same choices in her shoes, but I can't really blame her for what happened. Distrust of the medical establishment, the FDA, and the government is pretty common these days.
posted by whatnot at 7:54 AM on September 29, 2005

whatnot writes "but I can't really blame her for what happened."

What happened? You write that as if this is some random accident. What you mean is that you can't really blame her for caring more about her own sense of righteous conviction that she knows better than all the accepted science which conclusively proves that HIV causes Aids. You can't really blame her for not making a distinction between her own life and the life of the child she should be protecting, so that in addition to not getting treatment herself she refused even testing to her infant. You can't blame her for clinging to her irrational beliefs in the face of her child's illness, the symtoms of which, at least when she first described them, are commensurate with an Aids-defining condition? I'm pretty sure, despite the passive voice in your comment, that that's what the issue is here.
posted by OmieWise at 8:06 AM on September 29, 2005

If this woman thinks anal sex and drug-use cased AIDS, how does she think her 3 year old daughter caught it?
posted by delmoi at 8:12 AM on September 29, 2005

Worst case, they do nothing
posted by davejay at 6:16 PM PST on September 28

Or turn your skin gray. "Natural" does not necessarily mean "safe."
posted by Optimus Chyme at 8:27 AM on September 29, 2005

.

Sad. I hope doctors who hear about this will be more proactive in the future.
posted by agregoli at 9:46 AM on September 29, 2005

OmieWise, your comment is so full of preconceptions and vitriol I don't know where to begin. You are obviously having a great deal of fun putting words in my mouth, so I won't get in your way. Rest assured that any judgement you pass on this woman pales in comparison to the death of her child.

If this child had lived to adulthood, to eventually die of some other cause, what would her mother be then? A visionary? Or what if all the kids on AZT right now eventually die or become disabled as a result of the use of the drug? Will you then turn around and pass judgement on all the parents who allowed their kids to take these meds? Like I said, it's not a choice I would make, but it's not quite as black-and-white as many of the commenters here would like to believe.

I'm sure there are plenty of mothers out there who were relieved that they didn't take thalidomide for morning sickness, or amphetamines to control weight gain and reduce fatigue during pregnancy. These were common prescriptions during the 50s and 60s. This is where a lot of the erosion of trust in medical solutions seemed to begin. There are parents like me, who might jump at the chance to have their child in a clinical trial if it could save their child's life, and there are parents who don't care to have their children become fodder for experiments.

My mom quit smoking and drinking alcohol and caffeine when she became pregnant with me in '68, and many of her friends said she was being irrational. Even her doctor told her it was "no big deal," that she should do whatever made her more comfortable during the pregnancy. She trusted her instincts, and I am glad she did. But to this day, she refuses to pass judgement on those who did things differently. I am merely trying to do the same.
posted by whatnot at 10:33 AM on September 29, 2005

whatnot writes "But to this day, she refuses to pass judgement on those who did things differently. I am merely trying to do the same."

I'm not sure what preconceptions you refer to. Look, if you go back and read my comments throughout the thread you'll see that my thinking on this is anything but black and white. You should also see that I've said almost nothing about her choice (or the choice of the mother in the 2nd link) not to take meds during pregnancy. I did object to the tone of your first post, though, which makes it seem as if something simply "happened" to her kid. It didn't. Her kid contracted HIV from her, AND SHE DID NOTHING TO TREAT THAT. I'm glad that you're sanguine enough about a parent's responsibilities not to pass judgement on that, but at the very least that part seems perfectly condemnable to me. This isn't some mystery, it isn't an issue of might haves or could haves, we know that this woman gave her child a disease that is now considered largely chronic, but the mother's negligence made terminal.
posted by OmieWise at 11:02 AM on September 29, 2005

okay then, preconceptions (emphasis added):

... you can't really blame her for caring more about her own sense of righteous conviction that she knows better than all the accepted science which conclusively proves that HIV causes Aids.

"accepted science." accepted by whom? obviously not accepted by her physicians.


You can't really blame her for not making a distinction between her own life and the life of the child she should be protecting, so that in addition to not getting treatment herself she refused even testing to her infant.

Maybe she thought she was protecting her child.


You can't blame her for clinging to her irrational beliefs in the face of her child's illness, the symtoms of which, at least when she first described them, are commensurate with an Aids-defining condition.

"irrational" is a judgement. her beliefs are out of the mainstream, but not really that unusual. Plus, she took her kid to the doctor to treat an ear infection, which is pretty common.


Her kid contracted HIV from her, AND SHE DID NOTHING TO TREAT THAT.

She didn't know the child had contracted HIV. I myself am a little puzzled as to why she wouldn't have the child tested, so i'll concede on that one. Maggiore and the doctors both stated Eliza appeared normal and healthy until she showed up with the ear infection. And there are a few HIV-positive people who have survived for decades without meds. (And plenty of people who are pissed about the resulting cavalier attitude toward HIV)
posted by whatnot at 11:46 AM on September 29, 2005

OmieWise writes "I'm glad that you're sanguine enough about a parent's responsibilities not to pass judgement on that, but at the very least that part seems perfectly condemnable to me."

I apologize for this sentence, it came out harsher than I intended. I don't question your own parenting, or that of most parents, just Maggiore's.
posted by OmieWise at 11:47 AM on September 29, 2005

Our comments crossed in the ether.

I disagree, my first two statements are not preconceptions, they're predicated on her irrationality. Her view is irrational not because she refuses to accept the statements of scientists and doctors at face value, but because there just isn't a way to do research about this and not conclude that HIV causes Aids. Unless you're so iconoclastic as to be irrational. But I also think proponents of intelligent design are irrational, while I'm a scientific skeptic, especially regarding the role of money in science, I'm not a scientific relativist.

I was talking at lunch (before reading your second comment) about the trouble with the long incubation period of HIV and the false hope it gives some people. It's true that there are long-term nonprogressors who just never get sick. But almost everyone takes about 10 years to progress from contracting HIV to having Aids. Without testing and monitoring, there is no way to know where the disease is, what stage it's in. It's like saying that someone who is dx'ed with metastasized lung cancer has just gotten cancer throughout their body. That's not true, the cancer was there for a long time, they just didn't have any symptoms.
posted by OmieWise at 11:55 AM on September 29, 2005

Whatnot -- you need to read up a little more on Maggiore and her ilk. She didn't just "whoops" not realize her child was HIV positive or receive bad medical advice: she has a firm, ideological belief (verging on obsession) that HIV does not cause AIDS, which resulted in the death of her child. It's not just that she didn't treat the girls disease or test her -- Maggiore deliberately did not take the preventative measures she could have taken to bring the girl's risk down of contracting HIV in the first place. Indeed, she seemed to have taken deliberate measures to increase the baby's risk -- from conceiving her in the first place (which seemed to have taken some deliberate effort) to breastfeeding her. She sought out only doctors who agreed with her ideology, and refused to follow the advice of the overwhelming majority of doctors.

In the US legal system, there's a line drawn between idiosyncratic child rearing practices that parents have a constitutional right to follow; and actions that harm children, which parents have no right to do. The line is often fuzzy -- but not in this case. The baby should have been taken away from her by the state long ago. That she wasn't is just as much a failure of California's child welfare system as any kid beaten to death by her parent. It doesn't matter at all that Maggiore believed she was doing the right thing.
posted by footnote at 4:12 PM on September 29, 2005

i have to agree with whatnot on this.

it seems to me society wants it both ways. if you take paxil or strattera or vioxx at the behest of the medical establishment and have a problem with that med, like suicide or malformed babies or heart attacks, you are now likely to sue for big bucks. if you don't take AZT at the behest of the medical establishment (even if you tried it and decided it may be toxic for you) you get in trouble with the law. like whatnot says, what happens if we find out that AZT is way more toxic than anyone could imagine 10 years from now...then what?
posted by brandz at 7:29 PM on September 29, 2005

I think being exposed to something toxic that saves your life is better than the alternative of being dead.
posted by beth at 7:36 PM on September 29, 2005

Well, good riddance to their especially non-species-preservation-oriented (and kind of dumb) tributaries to humanity's river of genes.

Though, I suppose maybe a couple hundred or thousand years from now, a new line of people may emerge who have a resistance to HIV or something.
posted by EtJabberwock at 8:04 PM on September 29, 2005

I think being exposed to something toxic that saves your life is better than the alternative of being dead.

only if you can tolerate the drug. and then again, who knows if it will save your life?
posted by brandz at 8:24 PM on September 29, 2005

who knows if it will save your life?

So you're saying all the studies showing that AZT greatly reduces mother-baby transmission of HIV are just... what? faith-based nonsense?
posted by beth at 10:13 PM on September 29, 2005

EtJabberwock: Though, I suppose maybe a couple hundred or thousand years from now, a new line of people may emerge who have a resistance to HIV or something.

The future may already be here: Multiple studies of HIV-infected persons have shown that presence of one copy of this gene delays progression to the condition of AIDS by about 2 years. And it is possible that a person with the CCR5-32 receptor gene will not develop AIDS, although they will still carry the HIV virus.
posted by spazzm at 5:13 AM on September 30, 2005

brandz writes "it seems to me society wants it both ways. if you take paxil or strattera or vioxx at the behest of the medical establishment"

With respect, I think you're confusing several different strands of this very complex issue. (My response is prompted as much by trying to understand it myself as by anything else.):

1) No one forces people to take meds, it's something people either choose to do or not. The meds you refer to are all for non-terminal conditions which have other treatment options available.

2) We've mostly been talking about Maggiore in this thread, the mother from the last link whose daughter died because she received no treatment for HIV. The girl was never even tested. The issue isn't simply whether the meds are well-tolerated, it's whether or not the girl got treatment. She did not. I would still object to the mother's actions if she had chosen to treat the girl with berries and herbs, but at least then she would have been treating her. As it is she just let her die.

3) There is obviously a problem with the way medications, and even Medicine, are marketed in the US, but I think it's a real mistake to authorize the view that dismisses science because of concerns about marketing. It's a profoundly anti-scientific position, directly analogous to creationism. Is that your position? That science cannot tell us anything? Is it only medical science that is so compromised? How do you know the computer on your desktop is not shooting control rays into your head? If the last question seems like a crazy one, why isn't it crazy to suggest that all the science about HIV is false? (Not just wrong, false.)

4) AZT suffers from the problem of being one of the first antiretrovirals. This means that it was given to many people who had AIDS but had not gotten sick, whose HIV was uncontrolled on the new drug and who then got very sick (from AIDS) and died. To someone not paying attention it looked a lot like the drug made them ill, but it was the AIDS that made them ill. In addition, even when this didn't happen, AZT was used alone (because we didn't understand HIV as well as we do now, and we had few options), and in the presence of just the one drug, the HIV virus in those taking it became resistant, so AZT no longer killed it. Again, it looks like a failure of the AZT, but was simply a tragic limitation of the available medications. AZT is a good drug, though, well tested for use in maternal and neonatal uses to prevent the spread of HIV. See #3 about rejecting those studies.

5) Anti-retroviral drugs are no joke, and no one who doesn't have to should take them. There are real problems treating the side-effects, which extend far beyond nausea and vomitting. Patients have heart, liver and kidney trouble from these drugs; lipodystrophy which reshapes their bodies in strange ways; hyperlipidemia; acute Abacavir hypersensitivity reaction. Many of these are issues that need to be medically managed as intesively as HIV. The guidelines for treatment are clear, however, and people are not placed on these drugs until the benefits outweigh the risks. The studies pretty much use serious opportunistic infections and death as the events which become the criteria to set the CD4 (immune system) threshold at which medications are started. We know that people who fall below a certain number of CD4 cells are significantly more likely to die if they do not take meds.
posted by OmieWise at 6:02 AM on September 30, 2005

To add to what OmieWise said, the other part of the scandal is that Maggiore could likely have PREVENTED her daughter from EVER getting HIV! That's the true scandal for which she deserves a long prison sentence. Mother-baby transmission rates can be as low as 1% -- but only if the proper precautions are taken.

One study on mother-baby HIV transmission in the UK reports that:
"Vertical transmission rates rose to 19.6% (95% confidence interval 8.0% to 32.5%) in 1993 before falling to 2.2% (0.0% to 7.8%) in 1998. Between 1995 and 1998 use of antiretroviral treatment increased significantly each year, reaching 97% of live births in 1998. The rate of elective caesarean section remained constant, at around 40%, up to 1997 but increased to 62% in 1998. Caesarean section and antiretroviral treatment together were estimated to reduce risk of transmission from 31.6% (13.6% to 52.2%) to 4.2% (0.8% to 8.5%). The proportion of infected children developing AIDS in the first 6 months fell from 17.7% (6.8% to 30.8%) before 1994 to 7.2% (0.0% to 15.7%) after, coinciding with increased use of prophylaxis against Pneumocystis carinii pneumonia."
posted by footnote at 6:29 AM on September 30, 2005

just to be clear, i have been personally touched by AIDS. somebody i loved died from the disease. i have lost at least 100 friends to AIDS through the years. i also happen to do microbiology and infectious disease for a living. at one point in my life i would have considered myself to be somewhat of an expert in the field (i am not a doctor). currently, i work in the indusrty but no longer focus on AIDS/HIV. that being said, i resent the condescending attitudes laced throughout this post. i know more about the AIDS than i ever wanted to.

i do not argue the merits of AZT during childbirth. i think it's a good idea and if i were faced with a similar situation i would opt for the HIV treatment. what i do have a problem with is the state forcing a woman (people) to do something medically she chooses not to do. what else can the state force a pregnant woman (people) to do now or in the future when it comes to medical choices? i believe this woman made some poor choices but i defend her decisions to do so. i attended the planning sessions for the original ACTG076 trial (transmission trial) in washington, dc in the early 1990s. every woman there was protesting this trial, arguing that a woman is not merely a vessel for delivering babies. by the arguements listed in the above posts it sounds as if the unborn child would have more rights than the pregnant woman. clearly the woman admits to giving AZT a try and decided it wasn't right for her. she has every right to make that decision. we know AZT is toxic as well as we know AZT can cut transmission rates to single digits. what if the woman DID in fact use AZT with the hope of stopping transmission and the baby was still HIV positive? do we just say 'oh, well'? the issues here are extremely complex. i could write a thesis on it (but i will not as this is not the forum to do so). let me just say the issues are not as black and white as people may think. there are layers and layers of really difficult questions. how many here support abortion rights (a woman's right to choose)? how many here get their kids vaccinated for a host of preventable diseases? how many believe autism may be caused by vaccination? has anyone experienced institutional failure? do you trust the medical establishment every time? your doctor? did you know hospital error is the third leading cause of death in these united states? do you follow your doctor's orders? do you research meds that you are prescribed? the questions are endless and none of it is straight forward. in the end, we decide for ourselves (at least i hope we can decide for ourselves) and trust we make the right choices and live with those choices. none of it is without risk.
posted by brandz at 5:17 PM on September 30, 2005

brandz writes "clearly the woman admits to giving AZT a try and decided it wasn't right for her. she has every right to make that decision."

I'm sure you can guess that I also work in HIV/Aids. I still think you're confusing the woman from the first link with the woman from the last link whose toddler died. The first tried AZT, the second was never on meds and denies that HIV causes Aids. She never had her child tested.

I'm pretty torn about this, and nowhere do I advocate the state forcing her or taking her child away (at least I don't think I have in this post). I'm not at all sure what to think about it, although I've been opposed to mandatory testing and certainly to coerced testing through post-partum testing of neonates. The case here, however, is that the woman (in the LA times link) did not test her child for 3 years and her child died of Aids as a result. Which makes it, I think, even more complex than you've indicated. It isn't simply that she might have taken the meds during pregnancy (which might or might not have prevented transmission, and then you're right, what do we say if transmission occurs), but that she essentially refused her child medical care that might have saved her life. You're right that it doesn't make it black or white, but it does make it much more grey. Is it alright for Christian Scientists to refuse healthcare to their children other than prayer? If a child is dying of scurvy because of the beliefs of the parents do we let the child die rather than give her an orange?

It makes me feel much better about your answers that you've detailed your experience in your reply, because it indicates that your response was not simply one of science=bad, choice=good. It's a far too complex issue to let the matter reside there. If you read my response above, I explicity stated that I'm having trouble figuring this out as well, so I apologize for any condescension you may have read from me, it was not meant.
posted by OmieWise at 5:38 PM on September 30, 2005

i appreciate your response, omniwise. you are correct in that i am mixing the two women up. my bad, as i only read 2 of the posted links. i've noticed from previous posts historically that our opinions are usually in synch. and i think, in the end, we probably agree on this very complex issue. i too am torn and have actually thought about these issues all day. unfortunately (fortunately?) i can only post at night from home. i do believe science=good for the most part. but i also believe choice=good too. and i don't like the government butting in, obviously. the way medicine is rapidly progressing who knows what's coming next. stay tuned for forced cholesterol medication if you have high cholesterol and forced blood pressure meds if you have high blood pressure. afterall, it's for your own good. it's a brave new world! btw, i appreciate your incites to all of these complicated issues. carry on...
posted by brandz at 6:16 PM on September 30, 2005

"I want you all to remember this the next time anyone thinks about defending homeopathy, herbal remedies, chiropractic 'doctors,' and naturopaths."

Okay, color me loony, but I've been taking homeopathic medicine most of my life and have found if very useful. I'll go to a doctor if it's something genuinely medical, but if I bump my knee or if my muscles are sore I use Arnica and it works.

Many prescription remedies are nothing more than extracted chemicals from herbs. Many herbal remedies do, in fact work. Can they be used exclusively to fight cancer? No way. But they can, say, help alleviate illnesses cause by chemo.

As far as chiropractic is concerned -- I'm not sure if I myself buy some chiropractic practicioners' arguments about using chiropractic to heal everything under the sun, but they do know their backs. If you have a mild spine injury that doesn't need surgery, a chiropractic doctor is a good person to go to.

I think the key is focusing on the usefulness of the healing tool, and the overall risk. Is it the end of the world if I take some St. Johns, thinking it will make me less depressed? Maybe, if I'm actually suicidal. No, if I'm just feeling a bit down. Will taking arnica after an accident help? Not if it means I don't also go to the hospital. But it certainly can't hurt (assuming I'm not diabetic).
posted by Deathalicious at 8:32 PM on October 5, 2005