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The Oakland Tribune

Kaiser to fund research for rare disease

Last-minute decision reverses denial of controversial treatment that could save two boys

by Suzanne Bohan
Sep 05, 2002

Thursday, September 05, 2002 - Just minutes before a health care advocacy group was to denounce Kaiser Permanente on Wednesday for denying treatment for two boys with a rare genetic disease, Kaiser representatives announced the firm would provide $1 million toward research on a novel treatment that may save both their lives.

Hunter Bennett, 4, and his brother Tommy, 2, contentedly munched snacks while their relatives expressed relief over the surprise decision at the edge of a small crowd gathered for the late morning press conference in front of Kaiser's headquarters in Oakland.

"I think I've cried tears every day about this, and today these are happy tears," said the boys' grandmother, Freda Bennett, who lives in Pine Grove, a small town in the foothills of the Sierra Nevada. The boys live with their sister, Ciara, who also has the disease, and parents nearby in Ione. Six-year-old Ciara's condition has advanced too far for her to possibly benefit from treatment, according to her mother, Alicia Bennett.

In late 2001, Kaiser declined to pay for a costly treatment for the disorder, called Sanfilippo syndrome, which is usually fatal by adolescence, said Jerry Flanagan, a spokesman with the Foundation for Taxpayer and Consumer Rights, which helped organize the event. The treatment costs about $600,000.

A Kaiser spokesman said the treatment was denied because medical experts within the organization decided that the scant research on the remedy, which doesn't cure the disease but may prolong life, showed it was more risky than beneficial. The mortality rate from the treatment, which involves a cord blood transplant, ranges from 10 percent to 37 percent, according to Aetna, a health insurer that has covered Sanfilippo treatment in the past but now doesn't recommend it due to its "disappointing results," according to an Aetna spokeswoman.

When the family filed a complaint with the Department of Managed Health Care, an independent panel of doctors in that organization ruled in favor of Kaiser's position.

But Flanagan, with the consumer rights group, questioned the thoroughness of the independent panel's review.

He also challenged the completeness of Kaiser's assessment of the treatment, particularly since other insurers have covered the treatment in the past. "There were major inconsistencies between medical experts on the effectiveness of this treatment," he said. "It wasn't sound policy for Kaiser to make the denial so quickly."

During the event, Flanagan introduced a 15-year-old boy from Tulsa,

Okla., who underwent the treatment when he was 2 years old, to show that it can work. The boy, Daniel Morris, looked healthy and wore a constant smile while his mother, Theresa Morris, described his history and condition.

"He just enjoys life," said Morris. "I came today to show that Sanfilippo kids can be helped."

Kaiser's $1 million contribution will be donated to Duke University in Durham, N.C., for research on Sanfilippo, which operates the only medical center nationwide that provides treatment for the genetic disorder. The research funding is earmarked exclusively to study the effectiveness of the treatment for the two Bennett boys.

Sanfilippo syndrome results from a missing enzyme that normally breaks down a form of sugar. The unbroken sugar molecules accumulate in cells and cause progressive damage to the brain, heart, muscles and other tissues. "It becomes like glue," explained Alicia Bennett. Most children with Sanfilippo die by age 15.

The controversy over the Bennetts' case only presages what will surely be increasing bitterness over treatment decisions as medical research advances, pointed out Margaret McLean, the director of a biomedical ethics center at Santa Clara University.

"This is the tip of the iceberg," she said. "As there are more and more advanced technologies and more advanced diagnostic testing, these questions are going to come up with increasing frequency. And we're going to have some really painful choices.

"It's part of what having a market economy in health care does. If you're going to hold costs down, somewhere there's going to be a door that's going to be shut," she said.

Flanagan agreed that the Bennett case is part of a larger issue of how scarce health care dollars are spent. But he said the first step is investigating what percentage of health insurance premiums cover administrative costs and executives' salaries.

Once those questions are answered, he said, "then we need to look at these other hard decisions of how do we allocate health care dollars."