Financial toxicity is a serious concern for cancer survivors, and medical debt is on the rise, with cancer survivors significantly more likely to have debt and to declare bankruptcy, compared to people without cancer. Diagnosis: Debt is a reporting partnership between Kaiser Health News (KHN) and National Public Radio, “exploring the scale, impact, and causes of medical debt in America.” Over the past year, KHN Senior Correspondent Noam Levey explored medical debt through this series to better understand the scale and scope of the current problem. He found that medical debt in the United States is a much more pervasive problem than previously reported but has likely been underestimated because it can often be reflected in credit card balances, loans from family, and payment plans arranged with hospitals and providers. Currently, 100 million people in the US have some form of health care debt.

Noam shared that more than half of individuals with medical debt report having to make a difficult sacrifice, like cutting back on food and other essentials, moving in with friends and family, or taking on extra work. Medical debt can also serve as a barrier to accessing care. One in seven people report that they have been denied medical care because of the debt they owe. Additionally, individuals report that they avoided seeking care due to concerns they would go into debt or be sued by the hospital.

Medical debt can be particularly devastating for cancer survivors, as one in five people with cancer have more than $10,000 in debt and 60% say they have had to use all or most of their savings. When reflecting on the results of his research, Noam said, “We have a health system that is generating debt on an industrial scale, and nobody else does it like this in the industrialized world.”

Next, Tina Shih, PhD of MD Anderson Cancer Center discussed her research on financial hardships, referencing her study that explored how long cancer patients experience high out-of-pockets health costs. She found that cancer patients still experienced higher than average out-of-pockets costs six years after a cancer diagnosis, with the elderly population, low-income individuals without Medicaid, and people in good health experiencing the greatest financial impacts.

Lauren Ghazal, PhD, FNP-BC of the University of Michigan, who is also a family nurse practitioner and young adult cancer survivor, shared more about her research on the financial hardships experienced by adolescents and young adults with cancer. Her research gathered insights on young adult cancer survivors who have to ask for money and crowdfund, which she refers to as “both shameful and necessary,” to pay for their cancer care. She said, “Even though financial toxicity is a great buzzword – it’s a new, novel term – it’s not a new concept. There have always been financial hardship issues for cancer survivors.”

Kristie Fields, founder of the cancer nonprofit PinkSlayer and member of NCCS Cancer Policy and Advocacy Team, shared her valuable insights as a cancer survivor, discussing her personal survivorship journey and the importance of family. When she was diagnosed with cancer after losing her job and experienced financial hardships first-hand, her family played a large role in providing financial and emotional support and helping her care for her children. Cancer patients, she said, “Shouldn’t have to choose to go to treatment or eat or feed your family – that should be a no brainer.” Her experience led her to begin buying groceries, gas, and other necessities for cancer patients in her community. In 2016, she officially started her own cancer nonprofit to provide navigation, education, and support to cancer patients and their families.

To close the panel discussion, the panelists explored potential solutions to address medical debt. They agreed the Affordable Care Act has helped, particularly by covering preventive services, but does not address every issue, especially for cancer patients living in non-expansion states. Panelists expressed appreciation for the Inflation Reduction Act provision capping out-of-pocket drug costs for the Medicare population but recommended continued advocacy to extend this benefit to private insurance. The panelists also stressed the importance of advocating for yourself as a patient, financial navigation programs and financial counseling, patient navigation, openly communicating with your care team about expected cancer care costs, and capping out-of-pocket medical costs for all patients.