Background/Case Studies: Sickle cell disease (SCD) requires consistent, multidisciplinary care and frequent acute interventions, particularly for patients with severe genotypes. This type of care is challenging due to limited healthcare resources and a lack of specialized medical professionals. The National Alliance of Sickle Cell Centers (NASCC) is an organization that advocates for comprehensive care by supporting centers to ensure patients are receiving improved health outcomes, quality of life, and survival. Geographic distance and socioeconomic barriers exacerbate access challenges, especially among Medicaid populations. The Accelerating Kids’ Access to Care Act proposes streamlined interstate Medicaid enrollment for providers treating children with complex conditions like SCD. This study examines the geographic care landscape in Georgia, which has one of the highest SCD burdens in the U.S., and assesses the potential impact of this legislation.
Study
Design/Methods: County-level SCD prevalence data (Georgia SCDC, 2018) were analyzed alongside the locations of NASCC-designated adult, pediatric, and whole-life treatment centers. Two centers in Georgia (Augusta University and Aflac Cancer and Blood Disorders Center) and seven centers in neighboring states were included. Using R software (v4.1.2) and the distGeo function, the distance from each county centroid to its nearest center was calculated to assess spatial disparities in access.
Results/Findings: The nearest center for patients in 34 of Georgia's 159 counties is Florida or South Carolina. Of these 34 counties, 23 had 1 to 25 patients, seven had 26 to 50, two had 51 to 100, and two counties — Lowndes and Chatham — were home to 130 and 368 patients, respectively. The more than 6,000 patients in Georgia's other 125 counties lived closest to the two in-state centers.
Conclusions: This geographic analysis reveals how structural barriers—especially travel distance—limit care for Georgia’s SCD population. While telemedicine and outreach have helped, proximity to comprehensive care remains a significant determinant of service utilization. The Accelerating Kids’ Access to Care Act could reduce administrative and geographic barriers by enabling out-of-state Medicaid providers to access qualified NASCC centers. This model could inform broader efforts to promote equitable access for rare diseases nationwide.
