Churn, Churn Churn! a Mixed Methods Analysis of Young Adult Leukemia and Lymphoma Survivors' Experience Navigating the Insurance Landscape in a Post Affordable Care Act Era

• Published in: Blood 2024-11, Vol.144, p.785-785
• Main Authors: Zheng, Daniel J., Murphy-Banks, Rachel, Rodday, Angie Mae, Xiang, Qingyan, Linendoll, Nadine, Beauchemin, Melissa P, Ohlsen, Timothy J. D., Fleisher, Emma, Miller, Kimberly A., Freyer, David R., Crosswell, Howland E., Chan, Randall, Roth, Michael E., Parsons, Susan K.
• Format: Article
• Language: English
• ISSN: 0006-4971
• DOI: 10.1182/blood-2024-204928

Background: Historically, a high proportion of young adult (YA) cancer survivors have been under-insured despite ongoing need for medical care due to chronic health issues from cancer treatment. The Affordable Care Act (ACA) was intended to expand insurance access; however, it also increased the complexity of the insurance landscape. With limited data on this subject, we sought to explore the challenges YA survivors face with insurance coverage and utilization post-ACA, as well as how they adapted to these challenges. Methods: As part of a larger multi-center financial navigation intervention study, baseline questionnaires about insurance coverage and literacy were administered to 130 long-term YA leukemia and lymphoma survivors. A subset (N=45) participated in end-of-study semi-structured qualitative interviews. Quantitative questions were described with summary statistics. Qualitative interviews were transcribed and then coded using deductive directed content analysis to identify categories and themes related to insurance coverage (Hsieh & Shannon, 2005). Quantitative Results: A total of 130 YA leukemia (47%) and lymphoma (53%) survivors from 18 states representing 6 cancer centers enrolled between August 2022 and November 2023. Survivors' mean age was 30 (SD=5) years at enrollment, 10 (IQR: 6-16) years from diagnosis; 56% identified as racial/ethnic minority (Hispanic or non-Hispanic, non-White). Most (98%) had insurance coverage with 23% having Medicaid coverage. Twenty-nine percent of survivors found their insurance inadequate to cover their survivorship care in the last year, while 30% reported forgoing or delaying survivorship care due to a lack of understanding their insurance plan. Eighteen percent of participants sought new insurance plans in the past year to afford survivorship care; 78% endorsed this experience as “somewhat difficult” or “very difficult.” Over 70% correctly identified definitions for “copay”, “deductible, ”out-of-pocket“, and ”open enrollment“ on a national insurance literacy screener (Miner, 2020). Fewer correctly identified ”co-insurance“ (40%), ”health savings account“ (55%), and ”flexible spending account“ (52%). When asked where they get help to navigate insurance, 23% endorsed not knowing whom to ask or where to go. Qualitative Results: Interviews revealed that many YA survivors experience frequent “insurance churn” (i.e., moving between different insurance plans or between insured and uninsured status). As one survivor n