Financial burdens of insured adolescent and young adult cancer patients: A need for crowdfunding platforms, fundraisers, financial grants, and cost conversations with their cancer care team.

Abstract

83 Background: Cancer patients in the United States often experience distress surrounding out of pocket costs from treatment. Adolescents and young adults (AYA) 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 health insurance, cancer costs and use of crowdfunding. Methods: Eligible participants were ages 18-39, diagnosed with cancer, and currently insured. Recruitment occurred largely through patient navigators at two large cancer centers from October 2019 to March 2020. Data was collected via individual semi-structured telephone interviews, which were analyzed for content. Questions were asked pertaining to crowdfunding platforms, fundraisers, satisfaction with current health insurance policy, and cost conversations with their cancer care team. Interviews were analyzed applying two rounds of thematic content analysis. Summary statistics were calculated for demographics. Results: Twenty-four interviews were completed, with more than half of participants being female (58%), most participants being Non-Hispanic White (79%), mean age at 26.5, and currently receiving cancer treatment (79%). Three themes emerged about AYAs’ experience with treatment costs and health insurance: 1) Even with insurance, cancer care was unexpectedly expensive and burdensome on financial wellbeing; 2) Conversations about cost with cancer care teams were brief and rare and 3) Crowdfunding platforms, fundraisers or financial grants were often used as financial safety nets, and did not cover all out of pocket costs. More than half of participants expressed interest in having cost conversations with their oncologist, nurse or social worker. All participants expressed a need for education on managing cancer costs and a particular interest in educational information on appeals and out of pocket costs. Conclusions: AYAs with cancer report unexpected costs and are interested in discussing this with their cancer care team. AYAs often receive money from fundraisers, financial grants or crowdfunding platforms to assist with the expenses of treatment. Discussions between cancer care teams and AYA patients about health insurance policies and cost saving mechanisms may help reduce out of pocket costs and reliance on external financial mechanisms.