Understanding the impact of the Affordable Care Act on healthcare coverage, utilization, and outcomes for childhood cancer survivors

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PROJECT SUMMARY/ABSTRACT Childhood cancer survivors have increased risks for chronic conditions and mortality associated with late effects of cancer treatment, particularly in their adult years. While lifetime follow-up care, specifically surveillance for life-threatening late effects, is vitally important, many childhood cancer survivors never receive follow-up care. Lack of health insurance coverage is a key barrier to accessing needed healthcare services for adult-aged survivors of childhood cancer, with low-income adult survivors particularly vulnerable to being uninsured or underinsurance. The Affordable Care Act (ACA) provided an option for states to expand Medicaid coverage starting in 2014 to all adults with income ≤138% of the federal poverty level. To date, no studies have examined the impact of the ACA Medicaid expansion on increasing insurance coverage, improving access to recommended survivorship care, or the associated downstream changes in late mortality among childhood cancer survivors. We will study a cohort of approximately 20,000 adult survivors of childhood cancer from the Childhood Cancer Survivor Study (CCSS) who were diagnosed with cancer at age 21 or younger during 1970- 1999, as well as 4,000 of their siblings, across all US states and D.C. The nationwide CCSS cohort will allow a rigorous quasi-experimental approach to determine the net effect of the ACA Medicaid expansion on Medicaid coverage, health service utilization, and late mortality. The CCSS cohort will be linked to the national administrative Medicaid data files, spanning four years before (2010-2013) and after (2014-2017) the implementation of Medicaid expansion, to trace Medicaid participation rates and stability of Medicaid coverage. The data linkage will also allow the comprehensive capture of utilization of screening services for key drivers of late mortality, reflecting improved access to healthcare concordant with survivorship guidelines, as well as use of emergency department (ED) and inpatient services, a marker for limited access to non-ED ambulatory care. The existing link of all CCSS participants to the National Death Index will allow us to trace mortality and cause of death in this population through December 31, 2017. This research will inform policy interventions for cancer control toward reducing late effects related morbidity and mortality for childhood cancer survivors.