Hematologist encounters among Medicaid patients who have sickle cell disease

Abstract

Sickle cell disease (SCD) is a group of inherited hemoglobin disorders, affecting individuals from birth throughout their lifespan. Although life expectancy for those with SCD has increased into adulthood in recent decades, 1 the effects of the disease are cumulative and lead to significant illness and reduced quality of life for many. 2 Hallmarks of this disease include acute and chronic pain episodes, risk of organ damage and stroke, and high acute health care utilization. 3 SCD affects 100 000 persons in the United States, and millions more globally. In the United States, because SCD affects primarily Black persons and other persons of color, there are increased challenges for patients, families, and providers owing to institutional and systemic racism. ] Health care providers specializing in nonmalignant hematology for adults, however, are rare. Upon transitioning out of pediatric care, adults encounter a dearth of providers knowledgeable in SCD and a fragmented health care system. Multiple models have been proposed for best practice care for SCD, though various barriers to care have been identified, 15 the percentage of the SCD population that do not receive care is unknown. The Sickle Cell Data Collection (SCDC) program is a state-based, population-wide public health surveillance system for SCD. SCDC data from 2 states with large populations of people living with SCD, California and Georgia, were analyzed to quantify how often those with SCD receive care from a hematologist.