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Story from: http://www.sacbee.com/content/lifestyle/story/3155329p-4198909c.html

Kaiser rejects costly treatment for sick children
The HMO's experts say it shouldn't pay for what it calls risky, unproven procedure.
By Cynthia Hubert -- Bee Staff Writer
Published 2:15 a.m. PDT Saturday, June 8, 2002
An Amador County couple whose three youngsters suffer from a fatal genetic disorder have lost the first round of their battle to obtain a costly treatment that could save two of the children.

A panel of medical specialists from Kaiser Permanente has ruled against John and Alicia Bennett's request for insurance coverage for transplanting healthy umbilical cord cells into their sons Hunter, 4, and Tommy, 2.

The boys and their sister, Ciara, 6, suffer from a rare condition known as Sanfilippo syndrome, which causes progressive damage to the heart, bones, joints and respiratory and central nervous systems. It is usually fatal by age 13.

Ciara's condition is too far advanced to benefit from treatment, and the only hope for the boys may be the transplant, which costs about $600,000 per child. The procedure has been performed at Duke University on only two youngsters with Sanfilippo syndrome.

Both of those patients appear to be doing well, but it is unclear whether the treatment offers a cure, the physician who performed the procedures recently told The Bee.

The Bennetts, whose story appeared in The Bee on May 29, have been frantically pursuing transplants for Hunter and Tommy. With the help of family and friends, they have established a foundation in their children's name and raised thousands of dollars for travel, housing and food during the six months they would have to spend in North Carolina.

But the panel of Kaiser genetics specialists that has been studying the case recommended this week against insurance coverage for the procedures, spokesman Jeff Hausman confirmed.

Hausman said the panel considered various factors, including relatively high risks of death and complications from the procedure, and the fact that it is unproved in Sanfilippo patients.

The case now will be considered by a second Kaiser medical committee, which Hausman said would need compelling reasons to override the first panel's ruling.

The Bennetts plan to appeal to the California Department of Managed Health Care, which has the authority to decide whether an independent group of physicians should evaluate denials of HMO coverage. If such a panel were to decide that Kaiser must pay for the procedures, the company would be bound by state law to do so.        

"We have tremendous sympathy for this family," Hausman said. "The panel's decision was not a business decision. It was based on what these specialists believe to be in the best interests of the children."

In the meantime, John and Alicia Bennett face a wrenching decision. The family has enough funds to begin preliminary testing for a transplant for one child, Alicia Bennett said.

"But who do we choose? Hunter, who doesn't have much time left, or Tommy, who stands the best chance for improvement?

"We shouldn't have to make this kind of decision."

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Donations may be mailed to Bennett Children's Foundation, P.O. Box 1826, Jackson, CA 95642. The Bennetts can be reached at ciaras_foundation@yahoo.com.
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About the Writer
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The Bee's Cynthia Hubert can be reached at (916)321-1082 or chubert@sacbee.com .



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