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).
An ongoing problem
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.