Another tragically unnecessary death of a child

A few weeks ago, I commented extensively on the case of Abubakar Tariq Nadama, a five year old autistic child who died of a cardiac arrest while receiving an unproven "alternative" treatment (chelation therapy) for his autism. Now I've been made aware of another case just as tragic, a case also sadly resulting in the preventable and unnecessary death of a young child:

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.

Christine Maggiore is a high profile spokesperson for a movement that refuses to accept the now well-established science that concludes that HIV causes AIDS. She is the author of a book entitled What If Everything You Thought You Knew About AIDS Was Wrong?, has appeared on The Ricki Lake Show and 20/20, and has been interviewed for Mothering and Newsweek magazines about her activism for the contention that HIV does not cause AIDS. (Mothering, by the way, is the same magazine where the web discussion forums are filled with anti-vaccination rhetoric.) This phenomenon of HIV/AIDS denialism is disturbing to scientists and mainstream AIDS organizations for good reason:

Mainstream AIDS organizations, medical experts and ethicists, long confounded and distressed by this small but outspoken dissident movement, say Eliza Jane's death crystallizes their fears. The dissenters' message, they say, is not just wrong, it's deadly.

"This was a preventable death," said Dr. James Oleske, a New Jersey physician who never examined Eliza Jane but has treated hundreds of HIV-positive children. "I can tell you without any doubt that, at the outset of her illness, if she was appropriately evaluated, she would have been appropriately treated. She would not have died.

"You can't write a more sad and tragic story," Oleske said.

Well, actually, you can. The story of Abubakar Nadama, for instance. Both stories are as sad and tragic as can be imagined, and in similar ways.

I've encountered HIV/AIDS denialists before, not surprisingly, on misc.health.alternative. They tend to be influenced by the opinions scientists such as Peter Duesberg and Harvey Bialy, both of whom are proof positive of the way in which even f0rmerly reputable scientists can fall under the sway of pseudoscience. Based on their writings and those of others, HIV denialists claim that it is drugs like AZT used to treat AIDS that destroy the immune system, not HIV. Of course, when it is pointed out to them that AIDS was identified as a syndrome in the early 1980's and AZT wasn't widely used until 1987, they wave their hands and blame AIDS on "lifestyle" and "recreational drugs" (exacerbated by anti-HIV drugs, of course), which to me sound a lot like the unnamed "toxins" to which alties like to attribute many diseases. HIV denialists also ask questions like: Why do the in vivo and in vitro virus neutralizing antibodies that are present in easily assayable amounts in the blood of HIV infected people not protect against AIDS if HIV is the culprit? (Even I, a surgeon, can answer that one without having to look up any references: There are lots of diseases that provoke a neutralizing antibody response that doesn't fully protect against disease. Hepatitis B, for example. If the antibody response protected against disease, then the organism wouldn't be pathogenic.) They also like to claim that we don't know very much about how HIV does all the things to the immune system that it does, when in fact we know quite a bit about how HIV accomplishes its devastation of the immune system. In any case, the evidence that HIV causes AIDS is overwhelming, and the success of antiretroviral cocktails in decreasing death rates from AIDS and producing many actual long term survivors of a disease (AIDS) that used to be 100% fatal within a relatively short period of time flows from the scientific validity of the HIV/AIDS hypothesis.

The HIV/AIDS denialists, like alternative medicine cranks in many other diseases, cherry pick studies and ignore the vast quantity of evidence that doesn't support their point of view. They magnify anything we don't understand about HIV or any inconsistency in existing data and conveniently forget about the enormous amount that we do know about how HIV causes AIDS. They absolve themselves from having to come up with a compelling alternate hypothesis and the evidence to support it. And, of course, they postulate dark conspiracies of pharmaceutical companies wanting to "suppress" alternative "cures" and sell high-priced drugs. They also tend to be to be antivaccine, as many mercury/autism activists are and Ms. Maggliore was:

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%.

AZT and other anti-retrovirus drugs can decrease the risk of maternal-child transmission to very low levels and is responsible for the plummeting rate of cases of AIDS among children; for an HIV-positive mother to refuse to use it is tantamount to child abuse (no matter how well-meaning she is or how much she loves her child) and exposes the deficiencies in the child welfare system. And right in the thick of this story is an old friend, with whom Orac has tussled before over his posts to the Huffington Post: Dr. Jay Gordon, who apparently was one of the doctors who treated Eliza Jane:

Dr. Jay Gordon, a Santa Monica pediatrician who had treated Eliza Jane since she was a year old, said he should have demanded that she be tested for human immunodeficiency virus when, 11 days before she died, Maggiore brought her in with an apparent ear infection.

"It's possible that the whole situation could have been changed if one of the doctors involved — one of the three doctors involved — had intervened," said Gordon, who himself acknowledges that HIV causes AIDS. "It's hindsight, Monday-morning quarterbacking, whatever you want to call it. Do I think I'm blameless in this? No, I'm not blameless."

No, Dr. Gordon is not blameless. Although I believe that Dr. Gordon probably means well and probably does more or less accept that HIV causes AIDS, I hope he'll excuse me if I can't help but thinking that he sounds a bit like he is covering his behind. It is some of the stuff I've found on his own website that leads me to wonder about whether he truly accepts the science behind the HIV/AIDS hypothesis. For example, look at Dr. Gordon's preamble to a bunch of recommendations for unproven "remedies" to alleviate HIV/AIDS symptoms, such as echinacea to "strengthen the immune system" and milk thistle to "cleanse" the liver:

The conventionally and most widely held approach say that AIDS is caused by the HIV (Human Immunodeficiency Virus) which is a very difficult virus to kill or control.

There is a second school of thought not terribly popular with physicians: HIV causes AIDS with, because of, or assisted by the medication used to prevent AIDS. The usual anti-HIV medication is quite potent and works in ways beyond the scope of this article. Suffice it to say that the medications have huge side effects and that the latest research published in late-April makes it quite clear that our hope that the antiviral compounds actually cure AIDS is probably incorrect and the virus is very capable of surviving this chemical onslaught and "hiding" for many decades in the human body. Please do not misunderstand, as far as I can tell, many lives have been prolonged, changed for the better and even saved by advances in AIDS chemotherapeutics. I just think it's also very reasonable and prudent to investigate other ways of keeping this virus in check by strengthening the immune system's ability to deal with it and by increasing the overall health of the person who is carrying HIV.

Is it just me, or does it sound as though Dr. Gordon is rather sympathetic to the AIDS denialist position and somewhat grudging in his acceptance of the HIV/AIDS hypothesis? If, as Dr. Gordon says, he accepts the current science that HIV causes AIDS, then why does he present the the view that HIV causes AIDS "with, because of, or assisted by the medication used to prevent AIDS" on his website in such a context that leads the reader to believe that he considers the denialist view as almost equally plausible to what he terms the "conventionally" held view that HIV causes AIDs. Why is his disclaimer so weak? Why, also, did he not seem to consider the possibility that the "ear infection" that he suspected in Eliza Jane might be something more serious, given that he knew that she was the child of an HIV-positive mother who had flouted every medical guideline for preventing HIV transmission to her children, even having breast fed them? Why did he not insist on an HIV test? Even I would have known to suspect AIDS, and I'm just a dumb surgeon. No doubt Ms. Maggliore would have refused, but at least he would have started to do the right thing.

I am quite sure that Mrs. Maggliore is suffering enormous emotional pain because her daughter died. I also have no doubt that she loved her daughter as only a mother can, despite her rationalizations about the cause of her daughter's death. However, we must not allow our sympathy for her grief to lead us to forget that her daughter is dead because she enthusiastically bought into a bogus, pseudoscientific line of altie nonsense--or that she still buys the line and is aggressively selling it on the radio and elsewhere. It is indeed unfortunate that this horrific experience didn't lead her to wonder if maybe--just maybe--conventional science is right about HIV causing AIDS after all.

Unfortunately, all too many others buy into HIV/AIDS denialism too, which guarantees that Eliza Jane will not be the last child to be infected with unnecessarily with HIV via maternal transmission or to die from that infection.

ADDENDUM: Mossback Culture has more on this here and here,particularly on the role of prominent bloggers in facilitating HIV/AIDS denialism. (And, boy, is he pissed, so much so that he does something I wish he hadn't done and takes a cheap shot at his intended target in the last paragraph of this post.) His main target is one blogger in particular that I rather used to like--until I was made aware of his decidedly unskeptical (or, as I like to call such crankery, "pseudoskeptical") HIV/AIDS denialist opinions last spring (opinions that I would have been aware of sooner had I read his blog more often).

More can also be found, ironically enough, at the Huffington Post, where Trey Ellis comments. Other medical bloggers Red State Moron and Gordon's Notes have also commented.