http://www.latimes.com/news/printedition/la-me-eliza24sep24,0,4062292.story

From the Los Angeles Times

A Mother's Denial, a Daughter's Death

By Charles Ornstein and Daniel Costello

Times Staff Writers

September 24, 2005

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?"