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.