News release: National

September 4, 2002

For more information, call:
Beverly Hayon
Kaiser Permanente
Phone: (510) 271-6437
E-mail: Beverly.Hayon@kp.org

Statement on Sanfilippo Syndrome research contribution to Duke University

Oakland, CA – Today, Kaiser Permanente announced a $1-million research contribution to Duke University to further its research into a cure for Sanfilippo Syndrome, a disease where there is no known cure and little information.

John and Alicia Bennett of Ione, whose three children Ciara, Hunter and Tommy all suffer from Sanfilippo, have been seeking funds to help them pay the cost of an unproven and experimental treatment offered by Duke University.

In a letter to the Bennett family, George Halvorson, Kaiser Permanente Chairman and CEO, noted his compassion and commitment to the best course of action to help the Bennett family, while proposing a possible resolution that balanced the family's needs and Kaiser Permanente's medical concerns.

"As an organization made up of parents, grandparents, siblings and children, we know exactly how you feel. We realize and appreciate that the family's hope now rests beyond the realm of proven science and evidence-based medical judgment."

"Kaiser Permanente has made a decision to provide Duke University with a $1-million contribution through our research funds to further its research into a cure for this disease for your children."

While offering the grant to Duke in connection with the Bennett children's treatment, Halvorson stood behind Kaiser Permanente's decision not to cover the cost of the experimental procedure the Bennett's want their children to undergo.

"We want to be clear that our decision is consistent with the position we've held all along: 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. This decision has been supported by the California Department of Managed Care, which through a totally independent, State sanctioned medical review process found that Kaiser Permanente was making an appropriate medical decision for your children."

Halverson placed the Duke grant in the context of Kaiser Permanente's 60- year history of investing in medical research.

In the tradition of Kaiser Permanente's 60-year history of extensively and continually supporting medical research, and given that Sanfilippo Syndrome is such a rare disease and so little is known about it, Kaiser Permanente has made a decision to provide Duke University with a $1-million contribution through our research funds to further its research into a cure for this disease for your children."

He concluded, "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. We will continue to help with your care through our own processes as well."