Kaiser Gift Stirs Hope for 2 Ill Brothers
By CHARLES ORNSTEIN
TIMES STAFF WRITER
September 5 2002
Because of a $1-million research donation from
Kaiser Permanente, two
Amador County boys with a rare genetic disease may soon get
transplants that offer the only chance to save their lives.
Kaiser, the state's largest HMO, had refused for
months to pay for umbilical
cord-blood transplants for Hunter Bennett, 4, and his 2-year-old
Tommy. Their 6-year-old sister, Ciara, also has the disease, but is not
eligible for the transplant because the illness has progressed too far.
The HMO argued that the transplants themselves
could be life-threatening
and had not been proved to work. But, after an onslaught of media
Kaiser agreed to donate $1 million to Duke University in North Carolina
for research into the children's condition, known as Sanfilippo
Duke can use the money to cover the boys' medical costs there.
Technically, the HMO's decision does not set a
precedent or change its
position on covering the experimental treatment--but it allows the
to pursue its only hope.
"As an organization made up of parents,
grandparents, siblings and children,
we know exactly how you feel," wrote George Halvorson, Kaiser's new
executive, in a letter hand-delivered to the Bennett family Wednesday.
"We realize and appreciate that the family's hope now rests beyond the
realm of proven science and evidence-based medical judgment."
Sanfilippo patients lack a key enzyme needed to
break down chains of
sugar molecules. The sugar molecules build up over time, causing
organ damage and, ultimately, death. Most Sanfilippo patients don't
past their mid-teens.
A Duke researcher believes that the transplants
using babies' umbilical
cord blood may be able to stop the progression of Sanfilippo by
defective cells and providing the enzyme that its victims lack.
The boys' parents, John and Alicia Bennett,
learned of Kaiser's $1-million
gift several minutes before the start of a prearranged news conference
Wednesday morning at Kaiser's national headquarters in Oakland.
Rather than criticizing the HMO, as they had
planned, the Bennetts thanked
"I see a light at the end of our tunnel," said
Alicia Bennett, who began
crying when she learned of Kaiser's decision. "At least the boys have a
Dr. Joanne Kurtzberg, director of the pediatric
program at Duke, said she was elated to hear about the contribution.
she said she is still "a little bit gunshy," because she has not spoken
to Kaiser officials directly.
"We're certainly grateful that they would do this,
and we will use the
money to treat these kids," she said. "If this gets worked out in the
day or so, we'd have them come next week or the week after to get the
The parents had been frantically trying to raise
raffles, dinners and community fund-raisers--to pay for the
treatments. The parents had not even heard of Sanfilippo until after
three of their children were born.
The Times profiled their story last month, after
which the family received
about $75,000 in donations.
Although other insurers have covered cord-blood
transplants for Sanfilippo
patients in the past, ethicists said Kaiser should not necessarily be
for balking at an expensive, unproven procedure.
And a panel of independent medical experts hired
by California's HMO
regulators upheld Kaiser's refusal this summer.
But the Bennetts persisted. Because no other
treatments are available
for Sanfilippo patients, the children's alternative was death.
have not devoted as much attention to Sanfilippo, which affects just
in 70,000 children, as they have to more common diseases.
In Wednesday's letter, Halvorson wrote that the
HMO's action doesn't
change its contention that the "proposed experimental treatment is both
without any substantive evidence of value and too risky for the
But, he added, "We deeply hope that we are wrong
... and that our contribution
to Duke University will both help your children and advance the medical
community's understanding of how best to eventually treat this
Kurtzberg examined the boys in March, a month
after the Bennetts learned
that their sons had the disease. Before proceeding with the transplant,
she needs to run a battery of expensive tests on them to determine if
are good candidates.
If they are, the boys will be admitted to the
transplant unit, where
they will receive nine days of high-dose chemotherapy. On the 10th day,
they will get the cord-blood transplant, which is essentially a blood
Because the chemotherapy and transplant obliterate
the body's immune
system, patients develop side effects including low blood counts,
sores in the mouth, diarrhea and vomiting.
Patients are provided pain medicine, intravenous
feeding and antibiotics.
The children must stay in the hospital four to six weeks after the
and then visit an outpatient clinic every day for 100 days.
The Bennetts, who have argued their case on
television and in newspaper
articles, have made some important allies, including California state
Rico Oller (R-San Andreas), who has been pushing Kaiser to change its
"I'm absolutely tickled," Oller said of Kaiser's
donation to Duke. "They
really wanted to do the right thing.... This is what we hoped to
The state's top HMO regulator also praised
"I thought it was a compassionate response given
that their doctors
and independent doctors weren't willing to endorse this as a medical
said Daniel Zingale, director of the California Department of Managed
Care. "It sounds to me like that contribution has the potential to
the day when there is a real treatment."
John Bennett said he remembers how depressed he
felt upon learning that
all of his children had this incurable disease. On Wednesday, he said
felt "almost the opposite"--at least in the case of his two sons.
"It's starting to look a lot better to me," he
To cover remaining costs for their children's
treatment, a Web site
is soliciting donations: www.helpachild.net. Donations also may be sent
to the Bennett Children's Fund, P.O. Box 1826, Jackson, CA 95642.
Copyright 2002 Los Angeles Times