Kaiser Denies 2 Siblings Access To Life-Prolonging Care

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Phone Campaign Announced – Call Kaiser: “Please Pay the Bennetts’ Benefits” – TV and Talk-Radio Hosts: Urge Listeners to Call Kaiser

OAKLAND, CA. — KAISER PERMANENTE HEADQUARTERS — All three of John and Alicia Bennett’s children have been diagnosed with a fatal genetic disorder. The northern California couples’ HMO, Kaiser Permanente, has denied coverage for a treatment — that costs $600,000 for each child — which may delay the effects of the disease and lengthen and improve the quality of the children’s lives. Other insurers have already provided coverage for the treatment. The Foundation for Taxpayer and Consumer Rights announced today a phone campaign urging Americans to call Kaiser to ‘Please Pay for the Bennetts’ Benefits.’ FTCR also asked TV and radio talk show hosts to advise audiences to call Kaiser‘s corporate headquarters in Oakland California. Nurses representing the California Nurses Association advocated for health care providers and patients to get involved in the effort to save the Bennett children.

“In the most advance nation in the world, the lives of two insured children should not depend upon the generosity of strangers, car washes, and fundraisers,” said Jerry Flanagan of the Foundation for Taxpayer and Consumer Rights. “The public can help by calling Kaiser and asking them to review the basis for their current decision and ‘Please Pay the Bennetts’ Benefits.'”

Please call Kaiser Permanente at (510) 271-5957 or (510) 271-2640 and urge Kaiser to: “Please review the decision to deny coverage for the treatment and Pay the Bennetts’ Benefits.” If callers reach a voicemail recording they are asked to leave a message. The voicemail may not identify that the phone number is reaching a Kaiser office.

The Bennett’s three children Tommy, Hunter and Ciara — 2,4, and 6 years old – 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 any treatment, and the only hope for the boys may be a stem-cell transplant, which costs about $600,000 per child. The procedure has been performed at Duke University on four other children with Sanfilippo syndrome.

Dr. Joanne Kurtzberg, a researcher at Duke University, is one of the only physicians in the country experienced in performing a treatment for the disease. The treatment, requiring transplanting stem-cells found in umbilical cord blood, does not cure the disorder but offers the hope of prolonged and higher quality lives for the victims of the disease. In theory, the cord “stem cells” will produce enzymes in the blood that will rejuvenate the joints, other internal organs and, eventually, the brain. The procedure has already proven successful in other, closely related diseases.

“We urge Kaiser to review the evidence. It is clear that the treatment provided at Duke University has had a positive impact for some patients with Sanfilippo Syndrome,” said Jerry Flanagan. “There is no other treatment option for Tommy and Hunter. They deserve the same chance granted to other patients with the disease.”

Kaiser rejected coverage for the therapy, concluding that it is experimental and there is no evidence that it will benefit the children. However, other insurers have approved coverage of the treatment provided at Duke University for other children suffering from Sanfilippo syndrome. At the press conference, Theresa Morris, mother of a boy successfully treated at Duke for Sanfilippo Syndrome, spoke of her experiences and countered Kaiser‘s claim that the stem cell transplant procedure is an ineffective treatment for the disease. The young boy, Daniel Nardin, was also in attendance.

“Years of incomplete oversight has resulted in an irrational health care system where one insurer provides treatment for a disease while another does not,” said Jerry Flanagan of the Foundation for Taxpayer and Consumer Rights.

The Bennett family has started a non-profit foundation to collect donations to pay for the estimated $1.5 million dollars in medical costs and living expenses that will be incurred when the treatment is performed. For more information on the Bennett family, or to contribute to the fund, visit


The Foundation for Taxpayer and Consumer Rights (FTCR) is a non-profit, non-partisan consumer watchdog group based in Santa Monica California with offices in San Francisco. For more information on FTCR please visit our website at

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