Prevalence and monitoring: Sickle Cell in Volusia County

Through grant funding, the Petrock College of Health Sciences (PCHS) at Bethune-Cookman University (B-CU) provides on-site free sickle cell screenings and basic genetic counseling for the at-risk community in conjunction with clinical partner, Halifax Health.  The screenings are focused on older adolescents and adults who, for a multitude of reasons, may be unaware of their newborn screening results and may have sickle cell trait (SCT).  The at-risk population for sickle cell in Volusia County is approximately 315,000 people.  There is only one identified hematologist in the county who treat patients with sickle cell disease (SCD) or (SCT).  In the target area for services (area code 32114), approximately 22% of the population is uninsured, 41% are enrolled in Medicaid, and 21% in Medicare.  Services for pediatric patients with sickle cell are limited in the county (referrals/case management/direct care); services for the older adolescent and adult population are nonexistent and are not monitored.  A review of local emergency department records reveals sickle cell complications as one of the top five presenting diagnoses in the target area.  There appears to be no mechanism in place to capture data on the percentage of the population with SCD/SCT, nor are they or their families being tracked to provide education.  To address this, the PCHS is working with community partners (Easter Seals, the United Way and the Department of Health) to connect diagnosed patients with case management and direct care services.  The PCHS and the DOH are attempting to develop a registry/monitoring system for this population.