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The Stockton Record

Hope for Lode couple's sons

Kaiser pledges $1 million to help fight rare disease

by Francis P. Garland
Sep 05, 2002

OAKLAND -- An Ione couple fighting to obtain experimental medical treatment for their two sons received what they hope is a gift of life Wednesday when Kaiser Permanente said it would contribute $1 million to battle the rare disease afflicting the two young boys.

The health-care giant, which earlier refused to authorize costly umbilical-cord blood transplantation surgery for Hunter and Tommy Bennett, said it would contribute the funds to Duke University to further its research into finding a cure for Sanfilippo syndrome, a genetic disorder.

Alicia and John Bennett, the boys' parents, said the money would be used to treat their youngsters at the North Carolina facility. But Beverly Hayon, a Kaiser Permanente spokeswoman, said: "That will be up to Duke University. There are many details to be worked out."

In a letter to the Bennetts, George C. Halvorson, Kaiser Permanente's chairman and chief executive officer, said the insurer stands behind its decision not to cover the experimental surgery, which he deemed too risky and said showed no "substantive evidence of value."

But he also said: "It is our understanding that you as parents and Duke University will be willing to assume the health risks associated with this treatment despite Kaiser Permanente's and the State Department of Managed Health Care's informed concern.

"We deeply hope that we are wrong about the efficacy of the experimental treatment 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 truly insidious disease for the benefit of your children and future generations."

Barbara Chance, an administrative assistant for Dr. Joanne Kurtzberg, founder and director of the Duke Pediatric Bone Marrow and Stem Cell Transplant Program, said she could not confirm that the program would receive the money.

"We're working on how to accept the (contribution), if we can," she said.

Chance would not say if the funding could be used to pay for the Bennett boys' treatments, which could cost anywhere from $700,000 to $1.5 million combined.

But Jerry Flanagan, a spokesman for the Foundation for Taxpayer and Consumer Rights -- a group working with the Bennetts -- said it's his understanding that the Kaiser Permanente grant is earmarked for Hunter's and Tommy's treatments.

The Bennetts learned of the $1 million research contribution just before holding a news conference Wednesday outside of Kaiser Permanente's Oakland offices. Flanagan's group had planned to kick off a telephone lobbying campaign to persuade Kaiser Permanente to reverse its decision.

But Kaiser's contribution announcement changed that and left the Bennetts rejoicing. "It's great news," John Bennett said. "The more time that goes on, the more damage this disease does. And we want to get it stopped as soon as we can."

John Bennett said he hopes Hunter, 4, and Tommy, who turns 3 Sept. 18, can begin the treatments within weeks. He said the procedure includes three weeks of initial testing to establish their eligibility for treatment, nine days of chemotherapy to kill the bone marrow, the umbilical-cord blood transplant, three months of hospital isolation to allow the boys to build up their immune systems and three months of outpatient treatment.

The Kaiser contribution left Alicia Bennett at a loss for words. "I don't know what to say," she said, "except now my boys have a chance to live."

Hunter and Tommy were diagnosed with Sanfilippo syndrome earlier this year. Their older sister, Ciara, 6, also has the disease, but it has progressed too far for her to be saved.

Shortly after learning of the diagnoses, the Bennetts began researching potential treatments for their children and sought authorization to have Hunter and Tommy undergo the treatments at Duke University, where doctors have performed the procedure on several other children diagnosed with Sanfilippo syndrome.

Those with Sanfilippo syndrome are missing an enzyme that processes certain sugar molecules in the body. As the molecules build up, they damage cells, leading to severe mental deterioration, stiff joints, gait and speech disturbances, and eventually death. Most people with the severest form of the disorder don't survive their teenage years.

Kaiser Permanente rejected the Bennetts' request to cover the treatment, saying existing research showed the treatment offered no benefits and could harm the boys. An independent medical review board concurred with Kaiser's decision.

Other health-care providers have paid for similar treatments. Daniel Nardin, who underwent a similar procedure nearly 13 years ago, attended Wednesday's news conference and his mother said that if he had not undergone the treatment when he did, he would be either dead or unable to move around and interact with other people.

"He's infinitely better off with the treatment than without it," said his mother, Theresa Morris, who lives with him in Tulsa, Okla.

Still, John Bennett acknowledged that there is no guarantee the Duke treatments will prove successful.

"Dr. Kurtzberg told us we don't know how this is going to work out 20, 30, 40 years down the road," he said. "But we know without this treatment we don't have 20 or 30 years -- they have six or eight years left. So it might be a lifesaving treatment."

Although Kaiser contends there is no evidence the treatment works, John Bennett said, "We think there is, or we wouldn't risk the lives of our children."

Alicia Bennett said the prospect of having her two boys undergo the treatment is "very scary, because you never know what's going to happen. We'll keep our fingers crossed and hope for the best. Obviously we know what's going to happen if we don't do this."

Off to the side, John Bennett's mother, Freda Bennett, watched the red-headed Hunter tear off toward the street and wiped her eyes. "It's nice to cry happy tears for a change," she said.