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September 4, 2002

CONTACT: Jerry Flanagan, (415) 633-1320

Kaiser Permanente Agrees to Contribute $1M to Provide Treatment for the Bennett Children; Decision Moments Before FTCR Press Conf.

Kaiser Permanente announced its decision to provide a $1 million research grant to Duke University to provide treatment for two children with a rare genetic disorder. The Foundation for Taxpayer and Consumer Rights (FTCR) commended Kaiser for the decision delivered to FTCR's Jerry Flanagan and the Bennett family moments before a press conference at the health insurer's headquarters was scheduled to begin. After an impromptu meeting inside the Kaiser headquarters with consumer advocates, senior Kaiser officials, and Bennett family, the emotional and relieved parents announced the Kaiser decision to reporters waiting outside.

"Kaiser should be congratulated for providing the Bennett children -- Tommy and Hunter -- the chance to live. This is a step in the right direction for the state's largest insurer," said Jerry Flanagan, consumer advocate for the Foundation for Taxpayer and Consumer Rights. "The fact the Bennett children would have been granted care if they had been enrolled with another insurer means that the state legislature must enact changes that make certain that all California patients have access to comprehensive health care benefits."

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. The northern California couples' HMO, Kaiser Permanente, had previously denied coverage for the treatment at Duke.

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. Although the treatment is not a cure it may delay the effects of the disease and lengthen and improve the quality of the children's lives.

"Kaiser has not changed its position concerning the efficacy of the treatment provided at Duke University," said Jerry Flanagan. "However, Kaiser's $1 million contribution will give the Bennett children the same chance that other victims of the horrible disease have had."

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.

The Foundation for Taxpayer and Consumer Rights called on the California Legislature and state regulators to pass new laws that would ensure that all patients have access to appropriate medical care.

"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. "California's deserve to have access to comprehensive health care benefits that all insurers must abide by."

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