HIV skeptic faces child's death
Los Angeles Times
LOS ANGELES — 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 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 Charlie, 7, and Eliza Jane Scovill, 3. "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, it's highly unusual for any young child to die of AIDS. What makes Eliza Jane's death more striking is that her mother is a high-profile leader in a movement that challenges the basic medical understanding and treatment of AIDS.
Even now, Maggiore, 49, a former clothing executive from Los Angeles, 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 a 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 said he has been second-guessing himself since the day he learned of the 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 she be tested for the human immunodeficiency virus, HIV, 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 acknowledges that HIV causes AIDS. "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 the small but outspoken dissident movement, said Eliza Jane's death crystallizes their fears. The dissenters' message, they said, 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. "You can't write a more sad and tragic story."
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.
As Gordon suggested, at least three physicians were involved in Eliza Jane's care, including Dr. Paul Fleiss, a popular pediatrician who gained 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 and supported the family since before Eliza Jane was born. In 2000, the county Department of Children and Family Services (DCFS) 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.
With the death of Eliza Jane, authorities 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 opened an investigation to determine whether the parents should be forced to test Charlie, now 8.
Before Eliza Jane's death, Maggiore said she had tested neither of her children. Since then, she has had Charlie tested three times, and he tested negative each time, she said.
"Would I redo anything based on what happened?" she asked last week. "I don't think I would."
Maggiore said she once bought the standard line.
HIV — which she thinks she contracted through unprotected sex — would evolve into AIDS, or acquired immune deficiency syndrome. And AIDS, she believed, would kill her.
For months after her condition was diagnosed in 1992, she was depressed and reclusive. Then she dived into AIDS volunteer work.
Her background commanded attention. A well-spoken woman, she owned her own clothing company in Italy, 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, I felt like I was doing a good thing."
That changed two years later, she said, when she spoke to University of California, 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 came to believe that flu shots, pregnancy and common viral infections could lead to a positive test, claims she detailed 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 Web site 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.
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, Maggiore seemed 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 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.
She breast-fed both kids, although research indicates the risk of transmission is up to 15 percent.
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.
Eliza Jane's death
The first hint 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.
Six days later, Maggiore sought a second opinion from Gordon. In an interview, Gordon said he suspected an ear infection but thought 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, to examine her, the mother told the coroner's investigator. He found fluid in Eliza Jane's right eardrum. On May 14, he 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 and her mother noticed she was pale. While Maggiore was on the phone with Incao, the girl stopped breathing and "crumpled like a paper doll," the mother told the coroner. Eliza Jane died the next morning, at a Los Angeles hospital.
Incao did not return repeated phone calls.
Several medical experts said doctors who knew Maggiore's circumstances — that she was HIV-positive, hadn't been treated during pregnancy and had breastfed her children — should have pushed for the child to be tested.
If she refused, they should have referred the matter to authorities, they said.
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 was 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, and willful blindness is one aspect of determining the negligence," said Michael Shapiro, an ethicist and law professor at the University of Southern California.
Last week, Fleiss said it would have been wrong to force Maggiore to test her daughter. "This is a democracy," Fleiss said.
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.
For her part, Maggiore said her daughter's death took a toll on her health; she's had trouble eating, sleeping and breathing.
She's treated her symptoms with Chinese herbs, walked five miles a day and practiced yoga, and is feeling better, she said.
Copyright © 2005 The Seattle Times Company