By: Laurie McGinley
Even before Scott Steiner started treatment for a rare gastrointestinal cancer that had spread throughout his abdomen, a dangerous side effect threatened his health.
His doctor had prescribed the cancer drug Gleevec, but Steiner’s insurance refused to cover its $3,500 monthly cost. Steiner, a warehouse manager for a publisher of Bible-themed literature, and his wife, Brenda, a part-time nurse, made just $30,000 a year. No way could they afford the drug on their own.
“We still had six kids at home — how were we going to come up with that kind of money?” Steiner said. “We couldn’t re-mortgage the house, because it had already been re-mortgaged. I wouldn’t have been able to take the medication. We would have had to just trust in the Lord.”
It was a scary brush with “financial toxicity,” as researchers call the mix of economic stress, anxiety and depression cancer patients often endure. But then Steiner was assigned to Dan Sherman, an oncology social worker at Mercy Health Lacks Cancer Center who within days got a free supply of Gleevec from the manufacturer. He also made sure it was delivered promptly. The package arrived at Steiner’s home on Christmas Eve, his 46th birthday.
In the eight years since, Steiner has faced a series of medical and financial reversals, and each time Sherman has done as much as any doctor to keep Steiner going — scrambling to get the treatment he needed without sending his family into bankruptcy. “He keeps throwing me life rafts before I sink,” Steiner said.
With cancer costs only continuing to rise, Sherman and other “financial navigators” across the country have moved to the front lines of efforts to help people survive financially as well as medically. They take a highly individualized approach, working closely with patients and oncologists from the time of diagnosis and continuing through the twists and turns of a protracted illness.
Their strategy is to pull every lever available to extract maximum assistance from pharmaceutical companies, the government, foundations and the hospitals themselves, and to make sure patients know the best insurance options for their particular illness. Such aggressiveness is needed, experts say, because millions of Americans are struggling with high out-of-pocket expenses. The complexity of the health-care system only makes things worse, they add.
“We are experienced in dealing with the side effects of treatment,” Sherman said, “but we have not recognized that we are causing financial harm to patients.”
Although many in the health-care industry say such collateral damage must be addressed — that hospitals need to become much more sophisticated, that doctors need to shed their reluctance to discuss costs with patients — they acknowledge it’s not happening quickly.
“This isn’t something that health systems typically like to deal with,” said Scott Ramsey, director of the Hutchinson Institute for Cancer Outcomes Research at the Fred Hutchinson Cancer Research Center in Seattle. “But someone needs to step in, assess patients’ financial risks and do something to manage their finances.”
In that city, a nonprofit called CENTS is matching 25 recently diagnosed cancer patients from Hutchinson with volunteers who help manage their expenses and insurance needs. “People who feel safe financially and physically are going to have a better [treatment] result,” said co-founder Karen Overstreet, a retired federal bankruptcy judge.
In Milwaukee, social workers at Aurora Health Care’s cancer center have added financial counseling to the psychological support they’ve long provided to patients. “We didn’t want patients walking away from treatments because of the expense,” said Brad Zimmerman, who, like his colleagues, often turns to foundations funded by pharmaceutical companies and philanthropic groups to cover patients’ medication co-pays.
And in New York City, admissions staffers at Memorial Sloan Kettering Cancer Center now ask specifically whether patients have financial concerns about treatment, said Chief Operations Officer Kathryn Martin. “We work closely with patients on complex issues and even help patients pick insurance products that are best for them,” she said.
Behind such efforts is a bitter and fundamental dispute over why patients, even those with insurance, get hit with extraordinary costs for cancer care.
Barbara Jacoby is an award winning blogger that has contributed her writings to multiple online publications that have touched readers worldwide.