Childhood cancer survivors' familiarity with and opinions of the Patient Protection and Affordable Care Act

Abstract

Purpose: The Patient Protection and Affordable Care Act (ACA) offers avenues to increase insurance options and access to care; however, it is unknown whether populations with pre-existing conditions, such as cancer survivors, will benefit from the expanded coverage options. We explored childhood cancer survivors' familiarity with and opinion of the ACA to understand how survivors' insurance coverage may be affected.

Materials and methods: From April to July 2012 we conducted in-depth, semistructured telephone interviews with 53 adult survivors recruited from the Utah Cancer SEER Registry. Participants were randomly selected from sex, age, and rural/urban strata and were younger than 21 years at time of diagnosis. Interviews were recorded, transcribed, and analyzed with NVivo 9 by two coders (kappa=0.94). We report on the 49 participants who had heard of the ACA.

Results: Most survivors were unaware of ACA provisions beyond the insurance mandate. Few knew about coverage for children up to age 26 or pre-existing insurance options. Although one third believed the ACA could potentially benefit them via expanded insurance coverage, many were concerned that the ACA would lead to rising health care costs and decreasing quality of care. Survivors had concerns specific to their cancer history, including fears of future health care rationing if they developed subsequent health problems.

Conclusion: Childhood cancer survivors have a low level of familiarity with the ACA and are unaware of how it may affect them given their cancer history. These survivors require targeted education to increase knowledge about the ACA.