The findings by researchers at Duke University Medical Center and Dana-Farber Cancer Institute were reported Monday (June 6, 2011) at the annual meeting of the American Society of Clinical Oncology. They highlight the personal sacrifices that underlie current policy debates about health reform, Medicare coverage, and escalating health care costs.
“Overall, this study provides a patient–centered view of a reality of modern day cancer care — something that we call ‘financial toxicity,'” said Dr. Amy Abernethy, associate professor in the division of medical oncology at Duke and senior author of the study.
“We used to think about chemotherapy toxicity in terms of bad side effects like vomiting, nerve pain, confusion, and risk of fatal infection,” Abernethy said. “Now we are starting to think in terms of how treatment choices impact real aspects of daily living such as the ability to buy groceries or not.”
The research team surveyed 216 patients, some treated at Duke and others from around the country who sought help paying for their cancer care through the HealthWell Foundation, a national nonprofit that helps underinsured patients afford high-cost medications. The foundation sponsored the study.
Most of the study participants were women (88 percent) battling breast cancer (76 percent). All but one participant had insurance, with two-thirds of the study group covered by Medicare; 83 percent also had prescription drug coverage.
Yet even with health insurance, out-of-pocket expenses averaged $712 a month for doctor visit co-pays, prescription medicines, lost wages, travel to appointments, and other expenses.
Such expenses presented a significant burden to 30 percent of study participants and a catastrophic problem for 11 percent.
“I became homeless and our entire family has had to live with a friend several times,” one patient wrote to the study authors. Others noted they went without groceries to pay for medicines.
“My parents pay my medical bills, which is humiliating when I worked 27 years as a teacher,” another patient wrote.
Yousuf Zafar, MD, MHS, lead author of the study, said such financial burdens affected treatment choices as well. Zafar said patients reported not filling prescriptions, rationing medications, skipping treatment appointments, and opting out of recommended tests.
“These expenses are impacting health care because patients are not spending money on the care their doctors believe they need,” Zafar said.
He said the Duke study did not directly explore whether the patients suffered worse outcomes as a result of the treatment choices imposed by their financial burdens.
But the study did find that patients were less satisfied with their care when out-of-pocket expenses created hardship, and that patients were taking fewer medications due to costs.
“Increasingly what insurers and payers are doing is sharing costs with patients in the belief that the patient will be motivated to drive down expenses for unneeded or unwanted care,” said Jeffrey Peppercorn, MD, MPH, associate professor of medicine at Duke and a study co-author.
Peppercorn, who serves as chief ethics advisor for HealthWell Foundation, said the study indicates that cost-shifting often adds hardship to people already facing challenges.
HealthWell Foundation is a nonprofit association established in 2004 to provide financial assistance for prescription drug coinsurance, copayments and deductibles, health insurance premiums, and other out-of-pocket health care costs.
Other study authors included Amy Goetzinger, PhD; Agbessi Gblokpor; Robin Fowler; Devdutta Warhadpande; Donald H. Taylor, PhD; and Deborah Schrag, MD.