In a soft voice weakened by the effects of brain cancer, Steffanie Collings spoke from her wheelchair and her heart Wednesday in support of legislation that would require health care insurers to cover medical costs from clinical trials.
"There is really no hope for me if I can't try a clinical trial,” Collings said. "That's the last thing that's left. I'm not scared of dying. I have full faith and am ready to get it on and see if a cure could come out of this by me having this trial and trying the drug.”
Steffanie's parents, Noble residents Monty and Tracy Collings, stood behind her at a podium in the Capitol press room as she spoke to an audience of reporters in support of SB 1521, also known as Steffanie's Law.
The Collingses were denied coverage for a stem cell treatment that Steffanie, 18, underwent at Children's Hospital and have accumulated almost $400,000 in debt to fight the cancer that has afflicted their daughter.
"It's been hard having debt put on my parents,” Steffanie said.
Steffanie's Law is sponsored in the state Senate by Andrew Rice, D-Oklahoma City, and John Sparks, D-Norman, and is sponsored in the House by Rep. Kris Steele, R-Shawnee.
"This is an issue of fairness for Oklahoma consumers,” Rice said. "You have families who are purchasing a product, which is health care coverage, and in these cases the people that you are buying the product from are not holding true to their end of the bargain.”
Insurers use participation in clinical trials as an "opt-out” excuse to deny coverage down the line when other health issues arise, Rice said.
Monty Collings said the potential impact of the legislation would improve the lives of future victims of cancer and other diseases for which clinical trials offer hope.
"This is not for us, I want that understood,” Collings said. "This is for thousands and thousands of families that this is going to impact. A lot of people are foregoing treatment because they can't afford it. They are being denied the right to live.”
Collings faulted health insurance carriers for "picking and choosing” what they want to pay for, excluding treatments that may be part of a research project or a slight variation from normal accepted treatments.
No representatives from the insurance industry spoke up at the news conference, although a representative of the industry association, America's Health Insurance Plans, said the industry generally opposes coverage mandates on principle.
"What we find though is when we have a mandate issue arise, and on principle the industry has opposed mandates,” said Mohit M.