Sickle Cell Disease in Florida: Geographic disparities in access to care

Background: Sickle Cell Disease (SCD) is most prevalent in people of African, Mediterranean, Middle Eastern, and Indian decent. The number of individuals diagnosed with SCD in Florida is unknown. Population estimates using contemporary birth cohort and disease prevalence data are needed to identify the prevalence of SCD in Florida. Without prevalence estimates, anticipation of health care service needs is difficult.

Methods: Univariate analysis was used to determine the distribution of SCD in Florida stratified by genotype, gender, race, and county. Kaplan-Meier survival curves were used to construct SCD life tables, which were compared to 2007 National Health Statistics life tables for the healthy Black and White population. Florida Newborn Screening data from 2009 was used to analyze health care access barriers.

Results: An estimated 8,374 to 14,236 African Americans (AA) are living with SCD in Florida.  The 2009 AA incidence of SCD was 415 per 100,000 AA live births. From 2002 to 2009, 39% of SCD cases in Florida resided in large fringe metro counties; had abnormal hemoglobin for Sickle Cell (58%); were Black (82%), and Female (52%). Marked disparities in the number of SCD referral centers in comparison to SCD birth hospitals were detected. The number and distribution of SCD referral centers mediated major access to care barriers.

Conclusion: Florida counties with high prevalence of SCD (Palm Beach, Polk, and Leon) should address the lack of specialty healthcare services. Policies need to be implemented to help decrease healthcare cost and increase healthcare quality in high priority areas.