Mayfield Hts. couple want daughter to have chance at untested treatment

09/18/02

Regina McEnery
Plain Dealer Reporter

Dealing with their 4-year-old daughter's incurable neurological condition is stressful enough.

The last thing Stephen and Michelle Fitzpatrick want is a battle over insurance. But ever since Vantage Health Plan in Sandusky closed the door on an untested umbilical-cord blood transplant, the Mayfield Heights couple have found themselves passionately defending Jillian's right to the treatment.

Jillian has Sanfillipo syndrome III A, part of a family of neurological disorders known collectively as mucopolysaccharidoses, or MPS. Life expectancy for those with the disease is 14-20 years.


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Since August, when the rejection letter arrived, the couple have waged a letter-writing campaign and started a fund drive.

Yesterday, they got a fresh dose of disappointment when the Ohio Department of Insurance declined to overturn Vantage's decision. The state's review process examines cases in which coverage has been denied - in this case because the treatment is experimental.

Echoing the position of Vantage, the panel of pediatric specialists said there wasn't enough proof that the cord blood transplant, which would be done at Duke University Medical Center in North Carolina using umbilical cord blood and chemotherapy, would provide any benefit for this form of MPS.

The panel said that the transplant is too risky, that it is not the standard of care and that "few centers would consider this as a treatment option."

The panel acknowledged that bone marrow transplants had been used in other types of MPS, but none helped children with Sanfillipo type III A. And efforts using cord blood have not been documented in any peer-reviewed medical journal.

Jillian's mother said they won't give up the fight. "We've hired a lawyer, and we are going to sue," she said.

Nick Malobabic, executive director of Vantage, declined to comment on the case, citing patient confidentiality.

The Fitzpatricks will continue raising money for the transplant, which could cost between $300,000 and $600,000.

Tussles with health insurers are nothing new, but when the debates involve investigational therapies, they tend to set off a David and Goliath contest. Vantage, a tiny health insurer with only 6,000 members, may not quite meet the image of the Big Insurance Company, but the Fitzpatricks still feel betrayed.

"We felt like we were slapped in the face," said Michelle Fitzpatrick.

The syndrome, passed on by errant genes from both parents, is marked by developmental delays, behavioral problems, bone deterioration and dementia.

"If there is even a glimmer of hope that those who have received a transplant seem to be stabilizing, then I think we should offer it," reasons Dr. Nancy Bass, Jillian's pediatric neurologist at Rainbow Babies & Children's Hospital.

But after paying for pre-transplant testing at Duke, Vantage ultimately disagreed with the treatment course that the Fitzpatricks so desperately want.

"Jillian is as happy as can be," said Michelle Fitzpatrick. "She is smiling and happy. Most people joke that she is the only one that is happy right now. She has no idea what's going on."


To reach this Plain Dealer reporter:

rmcenery@plaind.com, 216-999-5338



© 2002 The Plain Dealer. Used with permission.

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