Reducing Health Care Disparities in Sickle Cell Disease: A Review

Abstract

Sickle cell disease (SCD) is an inherited blood disorder most common among African American and Hispanic American persons. The disease can cause substantial, long-term, and costly health problems, including infections, stroke, and kidney failure, many of which can reduce life expectancy. Disparities in receiving health care among African Americans and other racial/ethnic minority groups in the United States are well known and directly related to poor outcomes associated with SCD. As an orphan disease-one that affects <200 000 persons nationwide-SCD does not receive the research funding and pharmaceutical investment directed to other orphan diseases. For example, cystic fibrosis affects fewer than half the number of persons but receives 3.5 times the funding from the National Institutes of Health and 440 times the funding from national foundations. In this review, we discuss the health inequities affecting persons with SCD, describe programs intended to improve their care, and identify actions that could be taken to further reduce these inequities, improve care, control treatment costs, and ease the burden of disease.

Keywords: Medicaid; access to care; community health centers; health care disparities; sickle cell disease.

Figure 1.

(A) Estimated number of persons with sickle cell disease, based on state-specific African American and Hispanic birth-cohort disease prevalence and 2008 US Census population, corrected for early mortality. Map previously published by Hassell and reprinted with permission from the American College of Preventive Medicine. (B) Number of sickle cell disease treatment centers per state, 2017. Data source: Centers for Disease Control and Prevention (CDC). Used with permission from CDC.

Figure 2.

All-cause mortality rates for sickle cell disease identified through population-based surveillance (2004-2008), the African American population (2008), and all populations (2008), in California and Georgia. Source: Paulukonis et al.