Childhood Cancer Survivor Study participants' perceptions and knowledge of health insurance coverage: implications for the Affordable Care Act

Childhood cancer survivors face long-term health consequences, and comprehensive health insurance is critical. However, childhood cancer survivors may face barriers in accessing medical services due to being uninsured or underinsured. Little is known about the quality of survivors' health insurance coverage, and improving health insurance within the context of changes mandated by the 2010 Affordable Care Act requires understanding survivors' coverage. The current study explored adult childhood cancer survivors' quality of health insurance coverage. From 9/09 to 2/10, we conducted in-depth, semistructured qualitative interviews with 39 adult participants from the Childhood Cancer Survivor Study, a cohort of 5-year survivors of cancers diagnosed before age 21. Interviews were recorded and transcribed; content analyses were conducted by two coders (kappa = 0.88) using NVivo 8. Most insured survivors reported satisfaction with the quality of their coverage; however, they expressed low expectations. Almost half reported annual out-of-pocket costs exceeding $2,000, yet most felt fortunate to simply have coverage. One third of insured survivors had difficulty obtaining coverage, and many had difficulties understanding how to utilize it. Most uninsured survivors minimized their need for care. Worry about future health care costs seemed inevitable among insured and uninsured survivors. Almost all participants lacked knowledge about existing health insurance-related laws. Insured survivors had low coverage expectations, and uninsured survivors avoided care. Childhood cancer survivors will likely benefit from assistance in how to access and utilize the new health care reform provisions (e.g., Medicaid expansion, expansion of parents' insurance, and mandatory primary care coverage).