Inpatient and emergency healthcare utilization and payments for care of sickle cell disease: an analysis of all payers in Florida 2010-2019

Gene therapy offers transformative treatment for SCD, but access limitations necessitate continued reliance on traditional care, especially among pediatric and underserved populations. Thus, understanding healthcare utilization patterns and costs remains necessary for ongoing management and policy planning. We analyze all-payer emergency department (ED) and inpatient hospitalization data for Florida patients with SCD from 2010 to 2019. Payment estimates are constructed using novel charge-to-payment conversion methods. Outcomes are stratified by age (pediatric <12 years, adolescents 12-20 years, adults >20 years), insurance status, and income quartile. We find that ED visits for SCD increased by 95.7%, with the greatest growth among adults (106.3%). Mean ED payments rose across all age groups. Adult visits generated the highest average payments. Inpatient admissions grew by 13%, driven exclusively by adults. Mean inpatient length of stay (LOS) decreased across all age groups. SES analysis reveals persistent disparities, with the majority of ED visits and hospitalizations occurring in lower-income communities and among Medicaid (the payer with the lowest reimbursement rates) recipients. Our findings suggest that adults are increasingly the most resource-intensive users of healthcare, as successes in treatments have shifted the burden of care from children to adults. Shifts in health care resources have not appeared, however, to have kept pace with the changing demographics of the population with SCD (pediatric to adult care). ED use may have escalated particularly among adults because of the reduced access to prescription opioids for pain management in 2018 and lack of healthcare resources for non-pediatric SCD populations.