Bill would boost coverage for clinical-trial patients

By Jim Stafford

Published: January 23, 2008

When doctors at Children's Hospital in Oklahoma City told Steffanie Collings' parents that her last, best hope to survive the tumor that invaded her brain would be a stem cell transplant, they readily agreed to the procedure.

But then the Noble family's health insurance carrier balked at a course of treatment it considered to be a clinical trial and not qualified for coverage. The treatment was put on hold.

Eventually, Steffanie underwent the stem cell treatment, but without health care coverage for the procedure and subsequent medical care, the Collings family was left with hundreds of thousands of dollars of debt.

And a cause.

The family is supporting a bill that will be introduced this legislative session to force health insurance carriers to cover routine health care costs for patients participating in a clinical trial. The family will participate in a news conference in support of the legislation at 10:30 a.m. today at the Capitol.

Steffanie, 18, was diagnosed with a Medullablatoma brain tumor four years ago and had undergone chemotherapy and radiation treatments. The tumor returned in 2006, and the stem cell treatment was recommended.

Steffanie would be placed in a clinical trial in which new treatments or those different from conventional ones would be provided by health care professionals.

"Since Steffanie's was a different type of brain tumor than what they covered, they refused all treatments,” said Monty Collings, Steffanie's father. "The clinical trials were all denied, which created a hardship on our family, as it does on all the families (in similar situations).

Since the treatment was not covered by the insurance carrier, the hospital wanted $20,000 up front for the transplant. The family didn't have the money, so they turned to Nancy Thomason, founder and president of the Oklahoma Brain Tumor Foundation, for help.

After a lot of negotiating, the hospital agreed to do the transplant in May 2006.

"They went ahead and did the stem cell transplant against her insurance company's denial,” Thomason said. "Ever since then, the insurance company has denied coverage for subsequent care.”

Steffanie's condition improved, but the insurance carrier's refusal to cover what her family considered routine care after the procedure has left Monty and Tracy Collings deep in debt.

"What happens is families end up in hardship,” Monty Collings said. "It's like you have no insurance at all, but we are still expected to pay the premium.”

Steffanie's situation has become a political quest for her parents and Thomason. They are supporting Senate Bill 5121 for the upcoming legislative session. It would require health insurance providers in Oklahoma to cover routine care costs for patients who are participating in clinical trials.

The legislation, known as Steffanie's Law, was filed by Sen. Andrew Rice, D-Oklahoma City. Co-sponsor is Sen. John Sparks, D-Norman. House author is Kris Steele, R-Shawnee.

Similar legislation has been adopted in 23 other states, including Arizona, California, Louisiana, Missouri, North Carolina, Tennessee and, most recently, New Mexico.

"We think it's unfortunate that we've got this new medical research that we're all excited about and behind and offer up to our citizens, and then the insurance carriers won't cover it,” Rice said. "It's an important issue.

"I think we're finding that frustrations on insurance coverage for people who have private insurance is something that cuts across income lines and political affiliations. We just want it to get a fair hearing.”

There is an ironic twist to the clinical trials health care coverage that hits middle class Oklahomans the hardest, Rice said. Those who can't afford to purchase private health insurance coverage are covered by state or federal programs such as Sooner Care or Medicaid.

A similar bill was introduced in the Oklahoma Legislature in 2001 at Thomason's urging, but failed in committee. Thomason's young son died of a brain tumor almost eight years ago, after her attempts to involve him in a clinical trial in Houston were denied by her insurance carrier.

A spokeswoman for Principal Financial, which was the family's insurance carrier, said the company could not speak of the specific situation because of federal privacy laws.

Calls placed Tuesday to the industry group, America's Health Insurance Plans, were not returned.

Linda Sponsler, a spokeswoman for Blue Cross and Blue Shield of Oklahoma, said the insurer had not reviewed SB 5121.

"We typically do have concerns about laws that mandate a specific benefit,” Sponsler said. "The mandates typically contribute to more costs, and that's for everybody.”

Steffanie's health has declined in recent months as the cancer has invaded her spine, her father said. She is in a wheelchair, but expects to attend the news conference, he said.

Steffanie graduated from high school last May and intended to pursue a nursing career before her health declined again.

"The thing is with her faith and her positiveness, you can't get down around her,” Monty Collins said. "That's what has kept me and my wife going. God has a plan for everybody.”

Added Thomason: "She's not doing very well now. I hope we can make this happen before she leaves us.”

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