After Winning Their Battle With Kaiser Permanente, The Bennett Children Begin Treatment for Genetic Disorder

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Jillian Fitzpatrick of Ohio Denied Care for the Same Disease

As Tommy and Hunter Bennett prepare to receive a potential life-prolonging treatment for a rare genetic disorder, Vantage Health System has denied an Ohio girl, Jillian Noel Fitzpatrick, care for the same disease. Tommy and Hunter Bennett and Jillian Fitzpatrick — 3, 4, and 4 years old — suffer from a rare genetic disorder called Sanfilippo Syndrome, which has no known cure. However, the treatment provided at Duke University may slow the progression of the disease. Other national insurers have previously approved coverage for the treatment. The Bennett family flew to North Carolina to begin treatment at Duke on Sunday.

“The fact that Jillian Fitzgerald would have been granted care if her family had been enrolled with another insurer means that we must enact changes that make certain that all patients have access to comprehensive health care benefits,” said Jerry Flanagan of the Foundation fro Taxpayer and Consumer Rights (FTCR). “Years of incomplete oversight has resulted in an irrational health care system where one insurer provides treatment for a disease while another does not.”

The Fitzpatricks and Dr. Kurtzberg of Duke University appealed Vantage Health System’s decision to deny treatment for Jillian. However, the Ohio Department of Insurance announced today that they would not require the health insurer to pay for the treatment at Duke University.

“I am going public with this information because, frankly, I want to give my daughter a chance at living a normal life. The treatment at Duke University is the only means of achieving this goal,” said Stephen Fitzpatrick, Jillian’s father.

Kaiser Permanente announced its decision to provide a $1 million dollar research grant to Duke University for the Bennett children moments before a FTCR press conference at the health insurer’s headquarters was scheduled to begin. Kaiser had previously rejected coverage for the therapy, concluding that it is experimental and there is no evidence that it will benefit the children. At the press conference, Theresa Morris, mother of a boy successfully treated for Sanfilippo Syndrome 10 years ago, spoke of her experiences and countered Kaiser‘s claim that the stem cell transplant procedure is an ineffective treatment for the disease. The FTCR press conference was scheduled to announce a statewide phone campaign to get Kaiser to “Pay the Bennett’s Benefits.

One in 25,000 children suffer from the condition, which causes the body to

accumulate excessive amounts of sugar and over time causes brain damage, deformities, organ failure, and death. Dr. Joanne Kurtzberg, a researcher at Duke University, has pioneered 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 the most advance nation in the world, the lives of an insured child should not depend upon the generosity of strangers, car washes, and fundraisers,” said Jerry Flanagan of the Foundation for Taxpayer and Consumer Rights,

The Fitzpatrick’s have started a fund-raising campaign through the courtesy of Fifth-Third Bank in Greater Cleveland. For more information visit For more information on the Bennett family, 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

Consumer Watchdog
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Providing an effective voice for American consumers in an era when special interests dominate public discourse, government and politics. Non-partisan.

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