An unseen crisis: The gap between recommendations and reality

Abstract Individuals with sickle cell disease (SCD) face significant disparities in accessing recommended healthcare, particularly in rural and resource-limited communities. These inequities are evident in vision care, where national guidelines recommend regular ophthalmic screenings, yet for many patients, this is unattainable due to insurance-related or geographic barriers. Patients with SCD are often insured through Medicaid; however, ophthalmologists in non-academic settings limit or deny care to Medicaid beneficiaries, likely due to systemic payer-related constraints. This lack of access is alarming given the importance of regular screenings in detecting proliferative sickle cell retinopathy (SCR), a leading cause of irreversible vision loss. Despite the existence of clear clinical guidelines, structural barriers continue to impede equitable care, placing the vision and health of individuals with SCD at serious risk. This study aimed to examine differences in eye exam rates based on insurance type across three clinical sites in Georgia among patients with SCD. This retrospective analysis included 312 patients with SCD between 2021 and 2024 from three clinical sites in Georgia: Augusta, Macon, and Sylvester. Sites were selected to reflect distinct population sizes and levels of healthcare access. Augusta represents a larger urban center with an academic medical facility. Macon serves a mid-sized population with mixed healthcare infrastructure, and Sylvester is a smaller, rural community with limited specialty care availability. Patients were stratified by insurance type: Medicaid, Medicare, commercial, and self-pay. The primary outcome was the rate of eye exams by insurance type and clinical site. Descriptive statistics were used to summarize the frequency of eye exams and SCR diagnoses across insurance groups. The analysis revealed significant variation in eye exam rates by clinical site and insurance type. In Augusta, 59% of patients (85 of 143) received an eye exam, compared to 20% (15 of 77) in Macon and 9% (8 of 92) in Sylvester. Among Medicaid-insured patients, 60% in Augusta had an exam, compared to only 14% in Macon and 5% in Sylvester. Similarly, among those with commercial insurance, 58% in Augusta received an eye exam, compared to 41% in Macon and 7% in Sylvester. Across all sites, 45% of commercially insured patients (39 of 86) were screened, compared to 33% of those with Medicaid (38 of 116), 37% with Medicare (26 of 70), and 11% with self-pay (4 of 38). In conclusion, patients with SCD insured through Medicaid experience disproportionately low rates of ophthalmic screening, despite having comparable or even greater clinical need. Our findings reveal not only disparities by insurance type but also the compounding effects of geography and limited healthcare infrastructure across regions in Georgia. Addressing these inequities through targeted policy reforms that expand provider participation and improve access to care is essential to preventing avoidable vision loss in this high-risk population.