Sickle Cell Disease in Black Americans

Sickle cell disease (SCD) affects approximately 100,000 Americans, the vast majority of them Black. One in every 365 Black American births results in a child with SCD; one in every 13 Black Americans carries the sickle cell trait. Despite being one of the most common inherited blood disorders in the world, SCD has historically received less research funding per patient than comparable genetic conditions affecting predominantly white populations.

A landmark shift occurred in December 2023 when the FDA approved two gene therapies for SCD: Casgevy (the first CRISPR-based therapy ever approved) and Lyfgenia. These treatments are potentially curative. But access is acutely limited: each costs approximately $2.2 million per treatment, fewer than 40 comprehensive SCD centers exist nationally, and most are in major academic medical centers concentrated in large cities. Patients in the rural South — where SCD prevalence is highest — may travel hundreds of miles to receive specialized care.

Life expectancy for Black Americans with SCD has improved dramatically, from approximately 14 years in 1970 to about 53 years today. That progress represents decades of incremental improvements in supportive care, hydroxyurea therapy, and newborn screening. Yet life expectancy remains 20+ years shorter than the general US population, and SCD patients experience an average of three emergency department visits per year for pain crises. Black patients with SCD are consistently undertreated for pain compared to white patients with equivalent pain severity.