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"Nothing Is as Great a Learning Experience as Getting a $15,000 Bill": A Mixed-Methods Study of Young Adult Cancer
Daniel J Zheng1, Rachel Murphy-Banks2, Angie Mae Rodday3
1Division of Oncology, Children's Hospital of Philadelphia, University of Pennsylvania, Philadelphia, PA.
JCO Oncology Practice
|June 16, 2025
Summary
Young adult cancer survivors face ongoing health insurance challenges post-Affordable Care Act (ACA), including insurance churn and difficulty navigating coverage. Many delay care due to complex plans and high out-of-pocket costs.
Area of Science:
- Oncology
- Health Services Research
- Health Policy
Background:
- Young adult (YA) cancer survivors require ongoing medical care post-treatment.
- Navigating health insurance is crucial for accessing survivorship care.
- The Affordable Care Act (ACA) aimed to improve insurance accessibility.
Purpose of the Study:
- To explore the health insurance experiences of long-term young adult cancer survivors in the post-ACA era.
- To identify challenges faced by YA cancer survivors in managing health insurance for survivorship care.
Main Methods:
- Mixed-methods analysis of insurance data from 130 YA blood cancer survivors (≥3 years from diagnosis).
- Baseline questionnaires and semistructured interviews with a subset of participants.
- Qualitative data analyzed using directed content analysis.
Main Results:
- Most survivors had employer-based (63%) or public (22%) insurance.
- 18% sought new plans to afford care; 23% lacked navigation help.
- Survivors reported insurance churn, confusing navigation, stressful interactions, and financial burdens impacting care.
- 30% delayed or forwent care due to insurance plan misunderstanding.
Conclusions:
- Despite the ACA, YA cancer survivors encounter persistent insurance challenges.
- Key issues include insurance churn, inadequate navigation support, and significant out-of-pocket costs.
- These barriers hinder optimal survivorship care for this population.
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