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Bill inspired by Oklahoma brain tumor patient

Posted on: 01/23/2008

Bill inspired by Oklahoma brain tumor patient

By RON JENKINS Associated Press Writer
1/23/2008  1:01 PM
Last Modified: 1/23/2008  1:16 PM

OKLAHOMA CITY -- The case of an 18-year-old brain cancer patient from Noble has inspired introduction of "Stephanie's Law," which would require insurance companies to pay routine health care costs of patients taking part in a clinical trial.

"There's really no help for me unless I can try a clinical trial," said Steffanie Collins, who underwent a stem call transplant as part of a clinical trial 41/2 years ago. She attended a Capitol news conference in a wheel chair to show support for the bill.

Monty Collings, the girl's father, said routine health care costs for Steffanie have exceeded $500,000 since the surgery, and the insurance carrier has denied more than $400,000 in claims.

"I have watched my daughter over the past four and one half years struggle with cancer, and even though I am facing financial peril, I would make the same decision again when doctors tell me that clinical trials could be her only chance for a normal life," Collings said.

"We're praying every day that this will change lives. This is not for us. This is for the thousands of families this is going to impact."

He said the financial strain can lead to divorce in some families and other simply go without needed care.

"I would like this to
be passed so that way it would allow families to come closer together and not have to be split up because of debt and not being able to pay for something," Stephanie said.

Sen. Andrew Rice, D-Oklahoma City, introduced the bill to require insurance providers to cover certain clinical trial costs. He said 14 states have such laws.

"Families in Oklahoma should not have to decide between potential lifesaving treatments and personal financial ruin," he said. "There is little evidence that routine health care costs for clinical trail patients are any higher than costs for patients who are not enrolled in trials."

Supporters of the bill say a patient, for all practical purposes, loses their health care coverage if they take part in a clinical trial, even if they have no other effective treatment options.

Routine medical care being denied by some insurance companies include such things as pain medicine, doctor visits, hospital stays and lab tests.

"Oklahoma is blessed with state-of-the-art health care facilities where new clinical trials most often paid for by sponsoring groups such as the National Cancer Institute or a pharmaceutical company are creating hope for patients with life-threatening diseases," Rice said.

"It's not right that the only obstacle to possible lifesaving treatment is an insurance company which has ruled that participating in clinical trials disqualifies you from their health care coverage."

Nancy Thomason, found of the Oklahoma Brain Tumor Foundation, said the decision on pursing clinical trial treatment should be made by the doctor and patient, not insurance companies, who often define clinical trials as "experimental" procedures.

Dr. Scott McMeekin of the University of Oklahoma Medical Center said costs being denied are tied to "well-thought out clinical trials" that researchers have good reason to believe will be more effective than other treatments insurance companies might cover.

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