Adult survivors of childhood cancer struggle with insurance issues, health care costs, worry, and access to care

Compared to siblings, survivors face higher health care costs and higher rates of denial of insurance

Published: 4/2/2018

Insurance Policy Denied

About a year after the US Affordable Care Act (ACA) was passed in 2010, a team of LTFU researchers began a study of insurance coverage and underinsurance among LTFU Study participants. Their findings were recently published in the Journal of the American Medical Association.

The team analyzed the responses of 698 survivors and 210 siblings to a survey that was conducted in 2011 and 2012.  It’s important to note that the study participants provided their responses before some of the ACA’s major features, including coverage for preexisting conditions, were phased in.

The study showed that, compared to siblings, survivors paid more for health care and were more likely to be denied insurance coverage.


  • About 10 percent of the survivors and 8 percent of the siblings were uninsured – roughly the same amount;
  • However, more than 15 percent of survivors had been denied insurance coverage at some point, compared to less than 2 percent of siblings;
  • On average, survivors spent about $2,400 per year on out-of-pocket costs such as co-pays and prescriptions, compared to about $1,600 for siblings;
  • Survivors were more likely than siblings to worry that they would not be able to afford a needed medical procedure or prescription medicine. 
  • Survivors were also more likely to have to borrow money because of medical expenses.

In addition, it was noteworthy that insured survivors had high higher out-of-pocket costs than uninsured survivors. This finding suggests that the uninsured may not be able to access needed health care. In fact, about half of the uninsured survivors did not have a primary care provider.

What does this mean for you?

This study adds to the evidence that many survivors struggle financially and emotionally with health care concerns throughout their adult lives.

Dr. Elyse Park, who led the study, notes that “this study sets a benchmark for future studies to help us learn how the law’s newer provisions will affect the financial and emotional wellbeing of childhood cancer survivors.”


Park ER, Kirchhoff AC, Nipp RD, et al. Assessing Health Insurance Coverage Characteristics and Impact on Health Care Cost, Worry, and Access: A Report From the Childhood Cancer Survivor Study. JAMA Intern Med. 2017 Dec 1;177(12):1855-1858.