ASPO Abstracts
Health Insurance, Cancer Costs, and Educational Needs for Adolescents and Young Adults with Cancer
Category: Financial Hardship Associated with Cancer
Conference Year: 2020
Abstract Body:
Background: Insured cancer patients in the United States often experience substantial distress about out-of-pocket costs from their cancer treatment. Adolescents and young adults (AYAs) are more likely to be underinsured, skip care due to cost, go into debt, and file for bankruptcy after a cancer diagnosis than patients diagnosed at older ages. We conducted semi-structured interviews with AYA cancer patients and survivors to evaluate their experiences with their health insurance and cancer care costs, as well as to solicit feedback to inform the development of a health insurance education program.
Methods: Eligible participants were ages 18-39 years of age, at least 3 months since diagnosis, and currently insured. Recruitment occurred through social media advertising and contact with patient navigators at two large cancer centers. Recruitment is ongoing. Interviews were analyzed using thematic content analysis.
Results: In total 5 interviews of 25 have been completed, with the majority female (60%) and average age of 25. Four preliminary themes emerged about AYAs’ experience with treatment costs and health insurance. Participants: 1) felt that their cancer care was unexpectedly expensive and burdensome on their financial wellbeing; 2) reported health insurance coverage issues for specific services (e.g. fertility, genetic testing, mental health); 3) experienced a lack of understanding about cost saving mechanisms and consumer protections, such as appeals and essential benefits; and 4) often received funds from crowdfunding platforms (e.g. GoFundMe, Instagram auctions) or fundraisers (e.g. Samfund, Needs Beyond Medicine), although these did not cover all costs. All participants expressed need for education on health insurance and managing cancer costs and particularly expressed interest in content on appeals and managing out-of-pocket costs.
Conclusions: AYAs with cancer report unexpected costs and insurance coverage issues. To assist with the expenses of cancer treatment, AYAs receive money from fundraisers or crowdfunding platforms. Educational activities on insurance and costs for AYAs with cancer should focus on insurance terms/concepts, how one’s policy impacts out-of-pocket costs, and cost saving mechanisms.
Keywords: AYA, health insurance, navigation