Racial and ethnic disparities in health care persist in every facet related to equitable access, quality, and progressive research of diseases that disproportionately impact minority patients, especially sickle cell disease (SCD).
SCD is a rare inherited hemoglobin (Hb) disorder caused by a point mutation in the β-hemoglobin gene, resulting in the sickling of hemoglobin that distorts and injures red blood cells.1 SCD affects approximately 100,000 people in the US as of 2024, yet more than 90% of patients are non-Hispanic Black or African American. Patients with SCD often experience vasoocclusive episodes (VOEs), hemolytic anemia, organ damage, and failure, thus reducing their expected life span by 20 years when compared with the national average. 1,2 Despite this, patients’ extensive health care needs remain disproportionate. Treatments and therapies for SCD are often expensive, and patients report that their symptoms and pain are frequently dismissed or minimized. However, newer therapies, despite decades of stagnating research, can potentially improve access and increase patients’ life expectancy.
“[It’s an] obvious disease that affects minorities, and they have received less attention than diseases that affect nonminority populations,” Martin H. Steinberg, MD, a hematologist and internal medicine specialist at Boston University Chobanian & Avedisian School of Medicine, said in an interview with The American Journal of Managed Care® (AJMC®). “But I think over the last 50 years, that's changed dramatically so that there's a high degree of interest in research and sickle cell disease because it's a disease that's very amenable to treatment.”