Kaiser gives grant for rare syndrome research

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The Sacramento Bee

Kaiser Permanente announced a $1 million research grant to Duke University Wednesday in lieu of covering an expensive treatment for two Ione children with a fatal genetic disorder.

John Bennett said he believes the money will be used to treat his two sons, Tommy, 2, and Hunter, 4, who have the rare Sanfilippo syndrome. The illness, usually fatal by age 13, damages the heart, bones, joints, and respiratory and central nervous systems.

The HMO told John and Alicia Bennett of its decision just as the parents and consumer advocates arrived at Kaiser‘s Oakland headquarters to launch a call-in campaign urging coverage of the experimental stem cell procedure — an umbilical cord blood transplant — performed at Duke.

The Bennetts’ 6-year-old daughter, Ciara, also suffers from the syndrome, but her symptoms are too advanced for her to benefit from treatment.

Kaiser stood by its decision to deny coverage of the experimental procedure, which would cost $600,000 for each child, because it has not been proved effective and is very risky. In making the announcement, the HMO did not officially tie the money to treatment for the Bennetts.

“Obviously much will depend on how Duke uses that research grant,” said Beverly Hayon, a Kaiser spokeswoman.

But Daniel Zingale, director of the California Department of Managed Health Care, the Bennetts, and consumer advocates who spoke with Kaiser officials said they were all told the grant is intended to be used for the children at the Duke University’s Durham, N.C., academic medical center.

“That’s huge news to us,” John Bennett said. “I think it’s done.”

He said evidence is growing that the procedure will save his sons.

“(Kaiser) wanted a way out of the bad publicity they’re getting — so without admitting they’re wrong, they can pay for the procedure,” Bennett said. “I frankly don’t care what kind of spin is put on it — my only interest is to help my children.”

Kaiser‘s denial of coverage was backed by a state panel of three independent medical experts who determined that the procedure “would be harmful and not helpful,” Zingale said. The procedure has an estimated death rate of up to 30 percent.

Zingale lauded the grant, however. “I hope it sets a precedent for investing in research,” he said. “By making a research contribution, it provides the treatment the Bennetts were seeking without misleading anyone about its benefits.”

The grant is a good alternative to covering expensive, unproven therapies, said Walter Zelman, president of the California Association of Health Plans, because plans that cover those therapies increase costs for everyone.

“It may be wiser to invest in research in experimental treatments than to start spending money on delivering those treatments,” Zelman said. “Treatments should be proven before they’re used.”

But consumer advocates, while heralding Kaiser‘s announcement, said the Bennetts should not have had to depend on the HMO’s generosity and their own fund raising while some health plans cover the transplant. The state Legislature, they said, should establish standard benefits for everyone.

“It’s outrageous that anyone should have to turn to car washes and bake sales in the most advanced country in the world to save their children,” said Jamie Court, executive director of the Foundation for Taxpayer and Consumer Rights.

The family still faces challenges, because Hunter’s illness may at any moment go beyond the reach of treatment, said John Metz, a health care consumer advocate who joined the Bennetts in challenging Kaiser.

It remains to be seen whether Duke University will accept $1 million for an estimated $1.2 million procedure. Duke officials were not available for comment.


The Bee’s Will Evans can be reached at (916) 321-1987 or [email protected].

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