A Mother's Denial, a Daughter's Death - Los Angeles Times

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."

One doctor involved with Eliza Jane's care told The Times he has been second-guessing himself since the day he learned of the little girl's death.

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."...

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.

It is a story not just about Maggiore and her family but about failures among child welfare officials and well-known Los Angeles County doctors.

Among the physicians involved in Eliza Jane's care was Dr. Paul Fleiss, a popular if sometimes unconventional Los Feliz pediatrician who gained some publicity in the 1990s as the father of the notorious Hollywood madam Heidi Fleiss....

In 2000, the county Department of Children and Family Services investigated Maggiore and Scovill after a tipster complained that Charlie was in danger because he hadn't been tested for HIV and was breast-fed.

The department found no evidence of neglect, based partly on reassurances from Fleiss, according to an official report reviewed by The Times.

Now, with the death of Eliza Jane, authorities say they are poised to act.
A Mother's Denial, a Daughter's Death - Los Angeles Times


Anonymous Marshall said...

Sometimes I find it hard to believe how low the HIV-AIDS establishment will go to stay on the wrong track. Its like they will go out of there way to practice an error. Ghandi had a saying:"An error can never be made right however many times it is repeated. The truth can never be made wrong even if no one hears it."

10/03/2005 09:58:00 PM  
Anonymous Anonymous said...

As a father myself I feel devasted by Christine Maggiores loss.
For the last 15 years I've lived with an HIV-diagnosis. During the early 90-ties I witnessed patients at the Kobler centre fall ill. Then AZT mono-therapy was the big thing, combo-therapy trials were just starting.
Aids death were already in decline before combo-therapy became available to all patients, yet combo-therapy was hailed as the next big thing in the battle against AIDS.
By now the HIV/AIDS lobby had grown into a mutli-billion dollar industry. For a brief period I also took part in some trials. I did not have to work, received more benefits and the Kobler centre had another Guinea-pig. When I experienced side-effects, my social worker told me very bluntly to throw them away. And a great deal of other patients did just that. So they could continue to receive benefits. And research centres such as the Kobler could receive more funding.
During the mid-nineties I suffered a nervous breakdown. I could no longer extist like this. Lilfe had no more meaning, I had been sentenced to death yet I wasn't dying. In fact, as long as I did the exact opposite of what I was told by HIV-doctors -i.e. not taking the meds- I continued to stay healthy.
In my desperation I turned to alternative explanations with regards to the cause of AIDS. To my surprise I discovered that Nobel-prize winning scientists such as Kary Mullis who developed the AIDS test, and Peter Duesberg had quite plausible explanations. Such as that HIV exists but that it can not cause AIDS as AIDS is the result of frequent recreational drug use, poor living conditions and poverty.
To this day these theories still make more sense to me than orthodox views on AIDS. I am still perfectly healthy. And the father of a perfectly healthy boy.
I looked into HIV and AIDS very long. To date there is no document that demonstrates that HIV has been truly isolated in a scientific sense. Their has been no peer review of HIV-isolation.
Any other disease requires such strict isolation procedures. But HIV apparantly does not.
AIDS does exist. There is no doubt about it. But to date more people die of Malaria and TB than of AIDS.
And whichever way we look at it, we simply do not know whether or not HIV causes AIDS. We do know that TB-bacteria cause TB. They can be isolated.
But we can not say the same about HIV. We have not even isolated HIV, and ones immunesystem can be weakened for a great number of reasons.
To date I remain convinced that HIV is not the sole cause or only cause of AIDS.
To truly battle AIDS we should not spend such a disproportionate amount of funds on a virus that most likely does not cause AIDS. To eradicate AIDS we need to provide better education and drug prevention programmes and combat poverty and malnutrition. Then we will win the fight against AIDS. Not by continous funding into pseudo-HIV-sciences.

10/05/2005 02:03:00 PM  
Blogger lawnorder said...

The commenters above have interesting points and I do support an individuals decision to refuse a treatment, even for something as deadly as AIDS.

But I draw the line at imposing your views and decisions that risk death on a child. I believe Christine should have tried EVERYTHING, even conventional medicine, to save her child. After the child was 18 or 21 then she could decide for herself to continue with the treatment or not.

10/06/2005 08:28:00 AM  

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