Grant will help treat 2 young brothers denied coverage by HMO

The San Francisco Chronicle

The Bennett family stood in front of the Kaiser Permanente headquarters in Oakland on Wednesday, ready to wage a war against their health maintenance organization to get medical coverage for their two sons, who are suffering from a rare and fatal disease.

Instead, they came away with $1 million dedicated to researching their sons’ illness.

In a case that illustrates the tensions between patients and their HMOs — and what kinds of treatment are covered — Kaiser chose to compromise.

In an unexpected turnaround, the HMO, which rejected coverage for the Bennett boys, agreed to contribute a $1 million grant to Duke University in North Carolina to find a cure for the children’s disease, known as the Sanfilippo syndrome.

Duke University, in turn, is expected provide the experimental treatment that John and Alicia Bennett have been seeking for their sons, Hunter, 4, and Tommy, 2.

“Words cannot describe it,” Alicia Bennett said. She, along with her husband and a band of consumer advocates, learned of Kaiser‘s contribution just minutes before they planned to blast the HMO for rejecting coverage for the boys. “I’m just thankful, relieved.”

The Bennetts have a third child, Ciara, 6, who also suffers from Sanfilippo syndrome. But her disease has progressed too far for treatment.

All three children lack the essential enzymes to break down chains of sugar molecules, and deadly amounts of these sugar molecules stored in their cells gradually build up and eventually destroy their organs. Most children with the syndrome don’t live past their teenage years.

The disease affects 1 in 70,000 children, and there is no cure. The Bennetts say an experimental treatment conducted by a doctor at Duke University is their only hope.

The treatment, a form of stem-cell transplant, costs $600,000 per child. Kaiser Permanente has refused to cover the treatment for Hunter and Tommy, saying that the treatment could actually do more harm than good.

An independent medical review conducted by the panel of doctors through the state Department of Managed Health Care, the agency that oversees the state’s HMOs, agreed with Kaiser‘s conclusions and decided not to force Kaiser to cover the treatment.

But Kaiser‘s $1 million grant may turn things around for Hunter and Tommy.

“At least they get a chance,” said John Bennett. “It’s better than no chance at all.”

Kaiser, meanwhile, issued a statement Wednesday saying that it supports the need to research the disease while firmly asserting that it continues to stand by its original decision to reject coverage for Hunter and Tommy.

“Our deepest and most thoughtful, informed, scientifically reviewed decision has been that the proposed experimental treatment is both without any substantive evidence of value and too risky for the children and is therefore not a viable option that we can cover as a benefit,” said Kaiser‘s chairman and chief executive officer, George Halvorson, in the statement.

Daniel Zingale, director of the Department of Managed Health Care, said his office has received 250,000 complaints since it opened in January 2001. Issues range from obtaining a phone number for an HMO to challenges like the one filed by the Bennetts.

Fewer than 1,000 cases have come in front of the independent medical review board, Zingale said. About two-thirds of them have gone in favor of the HMOs.

Zingale said that the HMOs tend to prevail at that level because they know they have to have the medical evidence to back up their contention that a particular treatment should not be covered.

Company spokeswoman Beverly Hayon said that Kaiser chose to make the $1 million contribution to Duke University because it was compelled by the Bennetts’ story, but still disagrees with the treatment that the family is seeking.

“We’ve been desperately trying to mitigate this heartbreaking story,” she said. “We’re all torn by it. But we don’t endorse this procedure.”

If Duke University wants to use the $1 million to help the Bennetts, then that is the university’s decision to make, Hayon said.

“We’d like to see Duke University do research into this disease,” she said. “How they choose to use that money is up to Duke.”

Joanne Kurtzberg, the doctor at Duke who pioneered the stem-cell transplant to be used on the boys, said the university is still waiting for official word from Kaiser about the grant.

She said there is no doubt how the university will use the money once it’s in hand.

“It would definitely be used to treat these kids, there’s no question about that,” she said.

Hayon said Kaiser has always tried to steer away from covering experimental treatments.

California statute dictates that an experimental treatment can only be used if it is shown to be more beneficial than standard therapy. But with rare diseases, there is no standard therapy.

Jerry Flanagan, consumer advocate for the Foundation for Taxpayer and Consumer Rights, said that for patients who suffer from rare diseases, obtaining coverage is an uphill battle.

“The problem for people suffering from rare diseases is that there are only a few patients who suffer from it, and there isn’t a large body of medical data to show the effective treatment,” Flanagan said.

He added that HMOs have been inconsistent in the way they treat rare diseases. While one may agree to cover an experimental treatment, another might reject it.

The Bennetts are willing to take what they can get. Alicia and John Bennett plan to take their sons to Duke University as soon as they get the signal. They are preparing to stay in North Carolina until the procedure is completed.

There are risks involved. And although the treatment is not a cure, it may delay the effects of the disease and extend the children’s lives.

“It’s very scary — you never know what’s going to happen,” Alicia Bennett said. “Obviously, we know what’s going to happen if we don’t do it.”

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E-mail Pia Sarkar at [email protected]