The Cost of Surviving Cancer: Out-of-Pocket Spending and Financial Hardship, 2011–2016

An estimated 16.9 million people in the United States were living after a cancer diagnosis in 2019. Besides physical limitations, serious psychological distress and the lasting effects of treatment, many face another burden: money. Cancer therapy is expensive, and working-age survivors have faced higher out-of-pocket costs and financial hardship than older survivors.

CDC, the American Cancer Society and the National Cancer Institute analyzed the 2011–2016 Medical Expenditure Panel Survey (MEPS), a national household survey run by the Agency for Healthcare Research and Quality, along with its Experiences with Cancer questionnaires for survivors. Survivors were people who had ever been told by a doctor or other health professional that they had cancer. The study, published in CDC's MMWR, compared adults aged 18–64 with and without a cancer history, adjusting for age, sex, race and ethnicity, insurance, employment, other chronic conditions, marital status and education.

Who the survivors were

Compared with people without a cancer history, survivors were more likely to be older, female, non-Hispanic white, married, privately insured, working full time, better educated and living with several chronic conditions. About half (54.2%) had been diagnosed at least five years earlier.

Spending

• Average yearly out-of-pocket spending was $1,000 for survivors versus $622 for people without a cancer history — higher in every group studied.
• Survivors were more likely to have a high out-of-pocket burden — spending more than 20% of family income on medical care — 1.9% versus 1.0%.
• Among survivors, those with private insurance spent more out of pocket than the uninsured ($1,114 vs. $959), but the uninsured carried the heavier burden relative to income (2.8%, against 1.9% for the privately and 1.5% for the publicly insured).

Hardship

Survivors were asked about hardship caused by cancer, its treatment or its lasting effects:

• Material hardship — borrowing money, going into debt, filing for bankruptcy or being unable to pay their share of medical costs — affected 25.3%.
• Psychological hardship — worrying about large medical bills — affected about a third.

Hardship was more common among racial and ethnic minority survivors than among white survivors, and highest among those aged 40–49. Even many privately insured survivors reported borrowing money, falling into debt, going bankrupt or being unable to pay their share.

Why it matters

Professional and national bodies have increasingly flagged the cost of cancer care: the American Society of Clinical Oncology's Cost of Care Task Force in 2009, the National Academies of Sciences, Engineering, and Medicine in 2013 and 2014, and the 2018 President's Cancer Panel report on the value and affordability of cancer drugs. Health insurance is essential to affordable cancer care and is linked to better outcomes for survivors. With the number of Americans who have had cancer projected to grow over the next decade, the economic burden is likely to grow too.

The authors call on providers, practices, employers, insurers and state and federal governments to adopt evidence-based strategies, such as:

• screening for financial hardship at diagnosis and throughout cancer care;
• discussing possible financial consequences of treatments when patients and doctors decide on care together;
• linking patients and survivors to resources so they can get high-quality care.

Limitations

Cancer history was self-reported and not checked against medical records. Samples were too small to compare cancer types, and data on cancer stage and treatment weren't available. Some extra spending may reflect survivors' other health conditions, though the hardship questions asked specifically about cancer.

Sources

• Ekwueme DU, Zhao J, Rim SH, et al. "Annual Out-of-Pocket Expenditures and Financial Hardship Among Cancer Survivors Aged 18–64 Years — United States, 2011–2016," MMWR Vol. 68, No. 22, CDC; a work of the United States government in the public domain. The report puts psychological hardship at 33% in its summary and 34.3% in its results, so this page says "about a third."