Understanding the Sickle Cell Health Equity Gaps: Social Determinants of Health, Health Literacy, and Population-Level Strategies
Ronlanda H FoleyAbstract
Background
Sickle Cell Disease (SCD) is a group of inherited blood disorders characterized by the production of abnormal hemoglobin, which causes red blood cells to become hard and sticky. These cells can block blood flow and lead to pain and other complications. Diagnosis usually occurs at birth through newborn screening, a routine practice in most U.S. states. In the United States, about 100,000 people are affected by SCD, with over 90% identifying as Black or African American. The disease occurs in roughly 1 in every 365 Black or African American births, and approximately 1 in 13 are born with sickle cell trait. Despite advances in early detection and disease-modifying therapy, outcomes remain unequal due to limited health literacy, fragmented care, and persistent policy neglect. Individuals with lower health literacy are less likely to maintain high awareness of the SCT status; therefore, lower income, parental education, and literacy result in lower literacy and knowledge of the disease, which leads to poor health outcomes. The equity exists in SCD related to historical neglect, racial bias, systemic barriers, and socioeconomic factors.
Methods
This integrative literature review followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA 2020) framework. The review synthesized evidence on Sickle Cell Disease (SCD), social determinants of health (SDoH), health literacy, and health equity. A total of 427 records were identified. After removing 59 duplicates, 368 remained. Following screening and full-text assessment, 28 studies were included in the final synthesis
Results
While theoretical and policy frameworks articulate the why of inequities in Sickle Cell Disease (SCD), evidence-based strategies demonstrate how these disparities can be mitigated. Practical strategies for advancing health equity in SCD must address both micro-level factors—such as patient education, self-efficacy, and provider bias—and determinants, including health system design, resource allocation, and policy accountability. Current evidence points to an integrated approach that combines culturally tailored education, community engagement, value-based policy incentives, and academic partnerships.
Conclusions
SCD is examined through a population health and health equity framework, integrating theoretical foundations, health literacy constructs, and evidence-based interventions aligned with Healthy People 2030, NIH, AHRQ, and HHS policy priorities. The link between low SCT literacy, SDoH, and health outcomes are explored in the review. It also explores culturally tailored health-literacy interventions as a mechanism to mitigate inequities and improve self-management. A synthesis of recent literature is used to propose a model linking SDoH, health literacy, and equity-driven outcomes in nursing and public health practice.