PEORIA — Personal experience led a health economist from the University of Illinois College of Medicine Peoria to bring attention to the overwhelming financial burden that accompanies cancer.
Carl Asche, director of the Center for Outcomes Research at UICOMP lost his wife to cancer in 2017. Karmen Kirkness Asche fought cancer for more than two years before her death in 2017. The difficult experience was also exceedingly expensive. Carl Asche said it was only through good fortune and careful management that he does not suffer from financial toxicity today. He knows that many people are not as fortunate.
“I could see around me, I could see others in the patient waiting rooms, all the various pods at the cancer center, I could see it all - people were beat up, and not just the patients,” he said during a recent interview at UICOMP.
Asche is the lead author of a paper published in the August issue of the Society of Behavioral Medicine. Asche and fellow researchers from the University of Illinois Cancer Center in Chicago describe the problem and suggest ways to help.
Financial toxicity — debt and bankruptcy — can be the result of inadequate health insurance or an abundance of costs not covered by health insurance, and it can detrimentally affect the quality of life for both patients and their caregivers. The study presented sobering statistics on the rates of financial toxicity among cancer survivors. In 2014 the Agency for Healthcare Research and Quality estimated the total U.S. expenditure for cancer at $87.8 billion dollars. Out-of-pocket costs for patients accounted for $3.9 billion of that number, and as high as those numbers are, they do not take into account indirect costs like lost earnings.
A cancer diagnosis can drain financial resources quickly. One study followed 9.5 million Americans over the age of 50 diagnosed with cancer between 2000 and 2012 and found that within two years 42.2 percent had depleted their assets. At four years 38.2 percent were financially insolvent. Bankruptcy rates are 2.65 times higher for cancer survivors compared to the rest of the population.
Financial toxicity can directly impact clinical outcomes. Patients forced to economize frequently refuse medicines or therapies beneficial to treatment, and report higher levels of pain, depression, anxiety and a poorer overall quality of life. These patients are more likely to reduce their level of employment or stop working altogether. In addition, studies have shown that survivors who filed for bankruptcy have a higher risk for mortality.
And it’s an issue which follows survivors long after treatment is complete.
“Financial toxicity goes beyond the active treatment phase, and has substantial influences over our household’s economic reserve in terms of our assets, our retirement funds, our resources,” said Asche. “It affects resilience now and far into the future. If you’ve exhausted your resources, your savings and so on, there’s a co-morbidity commonly known as depression that accompanies having to manage, and all that leads towards other problems.”
The paper calls on policy makers to create a task force to address the issue and work toward policy reforms. Suggested reforms are a Medicare cap for cancer treatment costs irrespective of treatment setting, a limit on non-ACA compliant short-term health plans, and transitioning to clinical pathway payment programs. Read their recommendations at www.sbm.org/advocacy/policy-positions.
Researchers also suggested expanding employer supported paid leave through the Family and Medical Leave Act. Paid leave was very helpful for Asche while managing his wife’s illness with two young children at home.
“I had family medical leave through the University, so I basically gave up my sick days and holidays to be able to be around my loved one, and that’s pretty important to mention,” he said. Carmen Kirkness Asche also worked for UICOMP — the support the family received from their employer was a significant help.
Cost not something most doctors talk about when discussing cancer treatment with their patients, and that’s part of the problem. Asche is committed to further study of the issue, and plans to address the fact that patients are not given an accurate idea of cost before treatment begins. Fully informed patients would be able to better manage their finances.
“For the next five years I’m going to measure all these things,” said Asche, who is quick to point out the fact that he’s not a physician, but a healthcare economist whose role is to investigate how resources should be used in healthcare for optimal efficiency. His profession and life experience prompted organizers at the Univerisity of Illinois Cancer Center to ask him to create a seminar series for cancer survivorship in the spring of 2018.
“They knew about my situation, and what I did for a living,” said Asche. “I was asked to start the series by creating a presentation on financial toxicity, because it hadn’t really been explored. So that then led to my presentation, getting feedback from the audience and subsequently being asked to present a position paper, which we have done and published and that’s why we are here talking today.”
Asche wants the conversation to continue with the hope that it will lead to real change. It’s a conversation that started between Asche and his wife.
“My dying wife and I had conversations — how do people do this? How do you figure this out?” he said. “She couldn’t have handled it if she knew I was broke after all of this, because at the end of the day it’s the survivors who carry the torch. So I could see people making tough decisions so that the family doesn’t lose all their resources. I could see that, and I’m sure it happens all the time — just put me on an iceberg and push me out to sea.”
Leslie Renken can be reached at 686-3250 or firstname.lastname@example.org. Follow her on Twitter.com/LeslieRenken, and subscribe to her on Facebook.com/leslie.renken.