Abstract
Introduction: Adolescents and young adults (AYAs), particularly those 19-34, are the most highly uninsured age group in the United States. AYAs lacking any insurance or having public health insurance have been consistently found to have worse survival after a cancer diagnosis than those with private insurance, highlighting the need to better understand survival disparities and improve outcomes in this population. We examined the association of health insurance with stage at diagnosis, cancer treatment, location of cancer care, healthcare utilization, and chronic medical conditions/late effects (e.g., cardiovascular, respiratory, and endocrine diseases) and survival.
Methods: We included data on AYAs diagnosed with common cancers between the ages of 15-39 in the United States. We used complementary data sources to understand outcomes including cancer registries, electronic health records, surveys (e.g., AYA Health Outcomes and Patient Experience Study (HOPE)), and linkages to healthcare enrollment and utilization databases. Data from the California Cancer Registry (CCR) provided information on stage at diagnosis, location of cancer care, and selected Commission on Cancer (CoC) quality of care measures. CCR-Medicaid linked datasets identified the timing of insurance enrollment and CCR California Department of Healthcare Access and Information (-HCAI) linked dataset provided information on hospitalization and emergency department diagnoses and procedures. Medical Expenditure Panel Survey (MEPS) identified health care utilization and medical expenditures among AYAs with chronic medical conditions/late effects.
Results: Prior to the full implementation of the Affordable Care Act (ACA), 50% of AYAs with Medicaid insurance received this insurance at cancer diagnosis or were discontinuously enrolled just prior to or after cancer diagnosis. AYAs enrolled in Medicaid were more likely to be diagnosed at a later cancer stage than AYAs with private health insurance. The duration and continuity of Medicaid enrollment influenced these associations, with AYAs who enrolled at diagnosis more than 2.0 times, AYAs intermittently enrolled 1.7 to 1.9 times, and AYAs continuously enrolled 1.4-1.5 times more likely to have later stage disease than those with private insurance. Clinical trial enrollment, which is associated with receiving appropriate initial treatment in the AYA HOPE study, was lower among AYAs who were uninsured versus privately insured in 2006, but doubled in 2012/2013, such that there were no longer differences in clinical trial enrollment by health insurance type. In AYAs diagnosed with breast and colon cancer in 2014-2021, those with Medicaid insurance were less likely to meet CoC quality of care measures on chemotherapy and radiation administration, including radiation administered following breast conserving surgery within 1 year of breast cancer diagnosis (adjusted odds ratio (OR): 0.63; 95% confidence interval (CI) 0.52-0.76) and adjuvant chemotherapy administered within 4 months of diagnosis for stage III colon cancer OR: 0.52; CI 0.36-0.74). Among AYAs with acute lymphoblastic leukemia, those who were publicly insured were less likely in New York and Texas and more likely in California to receive care at a specialized cancer center, which was associated with better survival outcomes. Within an integrated healthcare setting, among 2-5-year AYA cancer survivors, healthcare utilization varied by health insurance source. Specifically, AYAs with public insurance were less more likely in any year to have no oncology or primary care visits and to utilize the emergency department. Data from multiple sources have identified that AYA cancer survivors with late effects were more likely to be publicly insured, with MEPS data identifying that AYAs with late effects had substantially greater medical expenses, prescription medications and healthcare utilization. Finally, in an analysis of CCR-Medicaid, we found AYAs with Medicaid insurance experience worse cancer-specific survival compared with those with private/military insurance.
Conclusion: Continuous medical insurance is important for AYA cancer survivors to maintain regular contact with the healthcare system, particularly for preventive care, early cancer detection, timely treatment, and appropriate survivorship care. While the ACA significantly reduced the proportion of uninsured AYAs, a substantial portion of working-age adults remain underinsured, experiencing gaps in coverage or high out-of-pocket costs, that results in not getting needed health care due to cost. Those lacking health insurance or experiencing gaps in coverage are disproportionately poor, young, and living with a chronic health problem. Not being able to afford plan premiums and cost-sharing requirements or loss of Medicaid eligibility are among the most cited reasons for lacking insurance or experiencing coverage gaps. This can lead to significant financial burden in the AYA population that then exacerbates insurance related access barriers to appropriate treatment and survivorship care. This underscores the need for policies to improve the continuity and quality of insurance options. In addition, given the complexity of insurance coverage, educational interventions to increase health insurance literacy among AYA cancer survivors may increase their ability to successfully navigate health systems, use their insurance to the fullest, and avoid unnecessary out-of-pocket costs. Our data also emphasize the need for policies to enhance access to specialized cancer care for AYAs overall and with Medicaid insurance, such as the California Cancer Care Equity Act, which enables Medicaid enrollees diagnosed with a complex cancer to request a referral to specialty cancer hospitals where emerging and effective cancer therapies and clinical trials are available.
Citation Format: Theresa H M Keegan, Frances M. Maguire, Renata Abrahão, Helen M. Parsons. Health insurance and outcome disparities in adolescents and young adults with cancer [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2024; Part 2 (Late-Breaking, Clinical Trial, and Invited Abstracts); 2024 Apr 5-10; San Diego, CA. Philadelphia (PA): AACR; Cancer Res 2024;84(7_Suppl):Abstract nr SY15-02.
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