HIV+ mother claims HIV doesn't cause AIDS; daughter dies from AIDS related pneumonia
http://news.yahoo.com/s/latimests/20...daughtersdeath
By Charles Ornstein and Daniel Costello Times Staff Writers Sat Sep 24, 7:55 AM ET
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. He was sentenced to three years' probation for conspiring to shield the profits from his daughter's call-girl ring from the IRS, among other things.
"I don't understand it," Fleiss said of Eliza Jane's death, "because I've never seen her sick or with anything resembling what she supposedly died of
. I don't believe I could have done anything to change this outcome."
Fleiss, who said he could be "convinced either way" on whether HIV causes AIDS, has known the family since before Eliza Jane was born. 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.
Los Angeles police are investigating the couple for possible child endangerment, said Lt. Dennis Shirey, the officer in charge of the child protection section. DCFS officials say they have opened an investigation to determine whether the parents should be forced to test Charlie, now 8.
Maggiore said that she has spoken with police and expects to meet with the child welfare agency early next week. Scovill would not comment in detail.
Before Eliza Jane's death, Maggiore said she had tested neither of her children. Since then, in anticipation of the visit by child welfare officials, she has had Charlie tested three times, and he was negative each time, she said.
"Would I redo anything based on what happened?" she asked rhetorically during an interview this week. "I don't think I would. I think I acted with the best information and the best of intentions with all my heart."
'Doing a Good Thing'
Maggiore said she once bought the standard line.
HIV would evolve into AIDS. And AIDS, she firmly believed, would kill her.
For months after her condition was diagnosed in 1992, she was depressed and reclusive. Then she plunged into AIDS volunteer work: at AIDS Project Los Angeles, L.A. Shanti and Women at Risk.
Her background commanded attention. A well-spoken, middle-class woman, she owned her own clothing company, with annual revenue of $15 million. Soon she was being asked to speak about the risks of HIV at local schools and health fairs. "At the time," said Maggiore, a slight woman who looks years younger than her age, "I felt like I was doing a good thing."
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%.
Scovill apparently shares her beliefs. Last year, he produced and directed a contrarian documentary, "The Other Side of AIDS," which won a special jury prize at the AFI Los Angeles International Film Festival.
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.
A Big Victory
In the 25-year history of AIDS, there have been many advances but few victories. Prevention of infections and deaths among young children is one.
"This is one of the biggest public health and medical successes in the United States," said Margaret Lampe, a health education specialist with the division of HIV/AIDS prevention at the U.S. Centers for Disease Control and Prevention.
The number of children found to have AIDS continues to plummet, even as the overall number of new AIDS cases in the United States remains stuck at more than 40,000 per year.
In 2003, only 59 children under age 13 nationally were found to have AIDS, according to the
CDC. That's down from 952 cases in 1992, officials said.
Health officials attribute the decline to regular testing of pregnant women and the use of antiretroviral drugs, such as AZT, during pregnancy and childbirth.
A 1994 study found that one quarter of pregnant HIV-positive women passed the virus to their babies when they did not take AZT. Subsequent studies found that the risk could be lowered to less than 2% when mothers received prenatal care, took a combination of antiretroviral drugs during pregnancy and labor, and allowed their infants to be given AZT in their first six weeks.
Federal health officials and AIDS experts say that HIV unquestionably causes AIDS, although it can take more than a decade to develop. HIV tests detect antibodies to the virus and are accurate predictors of who is infected, they say.
Dr. Peter Havens, a professor of pediatrics and epidemiology at the Medical College of Wisconsin, said that contrarian HIV theories promoted on about 400 websites are "bogus baloney."
"It's all pseudoscience," he said. "They choose one paper and deny the existence of 100 others."
Crumpled Like a Doll
The first hint that Eliza Jane was ill came at the end of April, when she developed a runny nose with yellow mucus, Maggiore told a coroner's investigator.
On April 30, Maggiore took her daughter to a pediatrician covering for Fleiss. That doctor found the girl had clear lungs, no fever and adequate oxygen levels, the coroner's report said.
Five days later, Maggiore sought a second opinion from Gordon. In an interview, Gordon said he suspected an ear infection but believed it could be resolved without antibiotics. In a follow-up call, he said, Eliza Jane's parents told him she was getting better.
Maggiore then asked Denver physician Philip Incao, who was visiting Los Angeles for a lecture, to examine her, the mother told the coroner's investigator. He found fluid in Eliza Jane's right eardrum.
On May 14, Incao examined her again and prescribed amoxicillin, Maggiore told the coroner.
Incao is not licensed to practice medicine in California.
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.
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."
In an interview this week, Fleiss said it would have been wrong to force Maggiore to test her daughter. "This is a democracy," said Fleiss, who has treated the daughter of pop star Madonna.
Gordon said he wishes he had tested Eliza Jane when she was ill in early May, but he doesn't believe he had sufficient reason to test her earlier.
"When it comes to HIV testing, I think that it's still legally a gray area," he said, depending on whether one believes the child's life is in danger. In Eliza Jane's case, he said, he did not.
David Thornton, executive director of the Medical Board of California, said his agency probably would investigate to determine whether the doctors erred, for example, in failing to report potential child neglect.
"If I would punish anybody," said Nancy Dubler, bioethics director at Montefiore Medical Center in New York, who learned of the case from The Times, "I would punish the pediatricians."
The Focus Turns
Now that authorities have settled on the cause of Eliza Jane's death, the focus has turned to the parents and their remaining child, Charlie.
Even when a child dies because he or she did not receive adequate medical treatment, the law is not at all clear about who, if anyone, should be held responsible. There are few precedents, and courts traditionally give parents and doctors wide discretion.
In two U.S. cases involving HIV-positive mothers who refused testing and treatment neither of which involved a child who died the courts appear to have issued conflicting opinions.
"There's no easy answer," said Dubler.
What is clear is that child welfare authorities had been told that Maggiore was HIV-positive in 2000 and that her son was at risk for the virus, according to agency records.
An investigator from the Department of Children and Family Services visited the home, according to a copy of the case report reviewed by The Times, but she did not have Charlie tested for HIV or talk to outside experts. She instead relied on her own observations and the assurances of Fleiss.
"Parents appear appropriate and extremely focused on child's well-being in every aspect," caseworker Rebecca McCauley wrote in February 2000.
Dr. Charles Sophy, medical director for the DCFS, acknowledged that his department may have erred.
He said the caseworker tried to do her job but relied entirely on Fleiss because the department, at the time, did not have its own medical experts to consult. But even with Eliza Jane's death, Sophy said, it's not entirely clear that Charlie is being neglected.
Legal experts said the problem lies in the official definition of neglect.
"DCFS is used to your prototypical neglect case where the house is filthy and the mother doesn't care," said Thomas Lyon, a USC law professor and expert in child abuse litigation. "They're just not accustomed to the kind of neglect where you have an otherwise healthy, good parent."
Word Is Getting Out
Since Eliza Jane's death, Maggiore and her husband have kept a relatively low profile, her friends said. But word is slowly reaching HIV dissidents around the country.
Though shaken, most of them say they continue to support Maggiore and her contention that HIV is not the cause of AIDS.
For her part, 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 went to a sympathetic doctor, she said. "If I had gone to a regular AIDS doctor and told them I was HIV-positive, I have no doubt they would have blamed it on that."
In the weeks after Eliza Jane's death, her parents created a website, http://www.ejlovetour.com , in her memory. Maggiore wrote lovingly of her daughter, wavering between despair at her loss and acceptance that Eliza Jane had simply chosen, as Maggiore put it, to "go home."
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?"
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