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
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. 
Published: December 2024

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 noted, “[I] just haven't had the energy to sign up for [new state] marketplace plan...it's been difficult to figure out how many more times am I gonna have to switch insurance coverage and how many- how do I navigate all that.” The frequency and different types of changes (e.g., aging out of parental insurance, job changes, relocations) magnified current challenges and issues including: (1) Ongoing confusion in navigating the insurance system necessitating learning by trial and error; (2) Stressful, time-consuming interactions with insurance companies; and (3) Impact on their ability to receive optimal medical care. One participant remarked, “it was kind of a second job in itself trying to prioritize which ones [bills] needed to be paid first.” Another said, “Nothing is as great a learning experience as getting a $15,000 bill, which should be covered, and then having to go through every single one of your coverage pages just to figure out why it is that they [insurance] tried to deny you.”
Discussion:
Despite overall high rates of insurance coverage, this diverse cohort of YA cancer survivors reported a striking degree of insurance instability and inadequate coverage specifically for their survivorship care under their plans. The frequent insurance churn highlights the persistent difficulty survivors face in maintaining and optimizing their insurance coverage, despite many being more than a decade from their initial diagnosis. While the ACA was successful in expanding insurance coverage, this was clearly only a first step and in fact may have contributed to new problems with the complex system that has emerged - particularly for YA patients. Targeted insurance navigation interventions must be explored with recognition that there will not be an easy “one size fits all” approach given the wide array of survivors' health and life transitions and the complex insurance landscape in the US.