Jennifer Carlson noticed a disturbing trend. Cancer patients who’d been put on cancer clinical trials at the Ohio State Medical Center were losing their insurance, making routine care and continued assistance impossible.
Carlson, the assistant vice president for external relations and advocacy at the medical center, came to the realization that this was a significant issue. In order to improve standards of care, patients must be allowed to “accrue onto trial.”
Carlson said unfortunately, insurance premiums included language along the lines of, “if you are recommended to go onto an experimental therapeutic, then you in fact become uninsured.”
“We felt it was taking too long when we went back to the insurers to say ‘We need to get these patients onto this trial because they’re terminal and their condition can change on a dime … and the delay in this review is harming the patients,” Carlson said.
Sen. Sherrod Brown (D), who became a champion for the Access to Cancer Clinical Trials Act on a national level, relayed a story to the American Association for Cancer Research that explained why it was such an important piece of legislation.
“An Ohioan named Sheryl Freeman came to see me in Washington, D.C. She was suffering from cancer, but her insurance company was not allowing her to enroll in a promising clinical trial recommended by her doctors. The insurer had included fine print in its policy that allowed it to use participation in a clinical trial as an excuse to stop paying for all routine care costs,” Brown told the AACR in June. “Sheryl wasn’t looking for the insurers to pay for the trial; the university’s cancer hospital was willing to pick up the tab, as it often will. She simply wanted routine care like x-rays and blood work covered.”
“Unfortunately, by the time the insurer relented, it was too late for Sheryl, who passed away in December 2007,” Brown told the AACR.
Carlson visited Steve Stivers (R), who was at that time a member of the Ohio Senate. She explained that it was hurting not only patient care, but also hurting the economic engine and delaying scientific discoveries.
“Steve introduced this state bill that ensures when patients are required to go onto clinical trial activity, you can’t make them uninsured,” Carlson said. “Meaning all of their routine costs need to be continued to be covered by the insurers.”
The bill passed, and federal legislation soon followed. The new law will go into effect in 2014, but Carlson said she hopes the process will be expedited.
“We’re trying to expedite when the bill provisions will go into effect. We’re still having problems and challenges getting patients onto trials because of that provision,” Carlson said. “But we’re thrilled about the fact that it’s going into effect in 2014.”
The lobbying disclosure forms don’t have specific amounts spent on individual bills.