Birth Prevalence of Sickle Cell Disease and County-Level Social Vulnerability - Sickle Cell Data Collection Program, 11 States, 2016-2020.

Sickle cell disease (SCD) remains a public health priority in the United States because of its association with complex health needs, reduced life expectancy, lifelong disabilities, and high cost of care. A cross-sectional analysis was conducted to calculate the crude and race-specific birth prevalence for SCD using state newborn screening program records during 2016-2020 from 11 Sickle Cell Data Collection program states. The percentage distribution of birth mother residence within Social Vulnerability Index quartiles was derived. Among 3,305 newborns with confirmed SCD (including 57% with homozygous hemoglobin S or sickle β-null thalassemia across 11 states, 90% of whom were Black or African American [Black], and 4% of whom were Hispanic or Latino), the crude SCD birth prevalence was 4.83 per 10,000 (one in every 2,070) live births and 28.54 per 10,000 (one in every 350) non-Hispanic Black newborns. Approximately two thirds (67%) of mothers of newborns with SCD lived in counties with high or very high levels of social vulnerability; most mothers lived in counties with high or very high levels of vulnerability for racial and ethnic minority status (89%) and housing type and transportation (64%) themes. These findings can guide public health, health care systems, and community program planning and implementation that address social determinants of health for infants with SCD. Implementation of tailored interventions, including increasing access to transportation, improving housing, and advancing equity in high vulnerability areas, could facilitate care and improve health outcomes for children with SCD.
Competing Interests: All authors have completed and submitted the International Committee of Medical Journal Editors form for disclosure of potential conflicts of interest. Sophia S. Horiuchi reports ownership of Natera stock and stock options and of Roche stock by her spouse. Mariam Kayle reports institutional support from Agios Medical Education Program and Novo Nordisk Independent Medical Education Activity to support the 11th Annual Sickle Cell Conference, September 8–9, 2023; receipt of consulting fees from Loyola University; receipt of honorarium for being an ad hoc reviewer from the National Institutes of Health (NIH), Center for Scientific Review, Social and Environmental Determinants of Health Study Section; and uncompensated membership in the American Society of Hematology Research Collaborative Data Hub Oversight Group, Sickle Cell Disease Subcommittee. Carri S. Polick reports support from the Veterans Administration and Duke University Clinical and Translational Science Institute. Ashima Singh reports institutional support from NIH, National Heart, Lung, and Blood Institute, the National Institute of Neurological Disorders and Stroke, and the Health Resources and Services Administration (HRSA) Sickle Cell Treatment Demonstration Program. John J. Strouse reports institutional support from the HRSA Southeast Region Coordinating Center Sickle Cell Treatment Demonstration Program and the North Carolina State Department of Health Sickle Cell Syndrome Program for the Duke Adult and Pediatric Sickle Cell Program; royalties from UpToDate for preparation of guidance on the use of hydroxyurea for sickle cell disease (SCD); consulting fees for GLG telephone consultation on SCD and Guidepoint telephone consultation on SCD; receipt of honoraria from the University of Rochester-Equity in Sickle Cell Disease Care; payment for medical legal expert testimony from Emory University in a case involving emergency department care of an adult with sickle beta thalassemia; travel support from the American Society of Hematology Sickle Cell Learning Community Meeting and Sickle Cell Disease Association of America Meeting to speak on behalf of the American Society of Hematology and travel support from the American Thrombosis Hemostasis Network Data Summit as an invited speaker on gene therapy for SCD: Design for Equity; payment for participation on a data safety monitoring board for disc medicines for phase 1 trial planning for bitopertin for SCD; and service as vice president of the Sickle Cell Adult Provider Network. No other potential conflicts of interest were disclosed.