Measuring the Economic and Social Toll of Cancer on Younger and Middle-aged Survivors and their Families

Measuring the Economic and Social Toll of Cancer on Younger and Middle-aged Survivors and their Families

Study shows how patients and their families often face unanticipated social and economic challenges associated with their cancer diagnosis and treatment 

As the cost of cancer care has increased over time, so too has the financial burden upon patients and their families, according to the results of a Kaiser Permanente study published today in the Journal of Cancer Survivorship. In addition to deductibles, copayments and other direct expenses, the study shows how patients and their families face other, often unanticipated, social and economic challenges associated with their cancer diagnosis and treatment, challenges that can impact their health decisions and their financial stability.

Matthew P. Banegas, Ph.D., M.P.H., an Investigator at the Kaiser Permanente Center for Health Research, led a team of researchers looking at the financial sacrifices cancer survivors and their families must make as a result of their cancer and the variety of forms this sacrifice can take, even for those with health insurance.

“Younger patients and survivors face unique challenges, as they are less likely to have accumulated wealth than older patients, but more likely to have children living at home or to encounter issues at work, including interruptions in their employment at the critical earning periods in their careers,” said Banegas. “We examined self-reported data from adults age 18-64 years of age who had participated in a 2012 LIVESTRONG Survey for People Affected by Cancer to discover how pervasive and lasting the social and economic hardships can be for the young and middle-aged cancer survivor.”

Prior research, he points out, has demonstrated that financial hardship during cancer treatment can lead to worse physical and mental health and can negatively impact the entire family. And for younger and middle-aged patients, the impact can last for decades, as many survivors continue to suffer the financial consequences of their disease for years following their treatment.

The study’s findings highlight the interrelationships among cancer, financial hardship, and the social consequences faced by survivors and their families. The most commonly reported financial sacrifices among all study participants included cutbacks on household budgets, challenges with health care insurance and costs, career and employment impacts, reduction or depletion of assets and the inability to pay bills. Although, survivors who incurred $10,000 or more in debt were more significantly likely to report distinct social and economic impacts, including housing concerns and strained family relationships. 

The study included 1,656 cancer survivors who responded to an open-ended survey question on the 2012 LIVESTRONG survey about making financial sacrifices. Among this group, over half (56%) of participants reported borrowing money or going into debt as a result of their cancer, with 33% borrowing or incurring debt of $10,000 or more. More than 5% of participants filed for bankruptcy because of cancer, its treatment, or the lasting effects of treatment, and 43% reported inability to cover their share of cancer care costs. Over 9% spent down assets to qualify for Medicaid or another cancer-related program. Most (85%) participants worried about paying large cancer-related medical bills.

The cancer survivor respondents included comments about their financial sacrifices and personal hardships, such as “I had to sell my house at a loss to have money to survive.” “I put my cancer expenses on credit card and eventually could no longer make payments on them.” “I was pressured to resign from my job and have not been able to secure another since my cancer diagnosis.” “I had to cash out my 401K to pay off medical bills.” “I got a divorce because of my being sick.” “My daughter had to come home from college.” “I had to sell my house at a loss to have money to survive.”

“The study underscores the need for health care providers to discuss the economic impacts of treatment with cancer patients early on so that they will know what to expect,” noted Banegas. Providing additional personalized support and referrals to mitigate any social and economic needs has the potential to address a critical aspect of a survivor’s long-term well-being. Physicians, nurses, health navigator, social workers, and others should be able to identify a patient with a need and make referrals either within the health care system or to community agencies and resources.

Kaiser Permanente is a leader in exploring ways to address the financial impact of health care for cancer patients and others, especially those with limited incomes and resources.  The Medical Financial Assistance program provides temporary financial assistance or free care to patients who receive health care services from Kaiser Permanente providers, regardless of whether they have health coverage or are uninsured. The program is one of the most generous in the health care industry and is available to those patients in greatest need. At Kaiser Permanente Northwest, non-clinical patient navigators are key members of the interdisciplinary care health care team, engaging with patients to identify and address their social and economic needs. The patient navigators work alongside nurses, social workers, behavioral health specialists, clinicians and other health care staff to help patients connect with community resources to meet their social and economic needs.

This study was funded, in part, by the Kaiser Permanente Center for Health Research. The resulting article is based on a secondary data analysis performed by the authors. Informed consent was obtained from all individual participants included in the study as part of the 2012 LIVESTRONG Survey for People Affected by Cancer. The complete study is available at https://link.springer.com/article/10.1007/s11764-019-00761-1.

Authors of the study included Banegas, Jennifer L. Schneider M.P.H. , Alison J. Firemark M.A, L.P.C., John F. Dickerson Ph.D., Alexandra M. Varga A.M., and Lisa A. Waiwaiole M.S. of the Center for Health Research, Kaiser Permanente Northwest, Portland, OR; Erin E. Kent Ph.D., M.S. and Janet S. de Moor Ph.D., M.P.H. of the Division of Cancer Control and Population Sciences, National Cancer Institute, Bethesda, MD; Katherine S. Virgo Ph.D., M.B.A. of the Rollins School of Public Health, Emory University, Atlanta, GA; Gery P. Guy Jr. Ph.D., M.P.H. and Donatus U. Ekwueme Ph.D., M.S. of the Division of Cancer Prevention and Control, U.S. Centers for Disease Control and Prevention, Atlanta, GA; Zhiyuan Zheng Ph.D. of the Economics & Healthcare Delivery Research, American Cancer Society, Atlanta, GA ; Stephanie M. Nutt M.A., M.P.A.  of the University of Texas at Austin, Austin, TX; Aditi Narayan M.S.S.W. of the LIVESTRONG Foundation, Austin, TX; and K. Robin Yabroff Ph.D., M.B.A. of Surveillance and Health Services Research, American Cancer Society, Atlanta, GA.