Sickle cell disease occurs in about 1 out of every 365 Black or African American births. About 1 in 13 Black babies is born with sickle cell trait, having inherited the gene from one parent. More than 90% of people with sickle cell disease in the United States are non-Hispanic Black, and an estimated 3% to 9% are Hispanic or Latino.
The widely quoted figure of about 100,000 people living with the disease in the United States comes from two studies published in 2010. CDC states plainly that the exact number is unknown. Treat 100,000 as the best available estimate, not a count, and treat any state-by-state breakdown with suspicion: no agency publishes one, which is why this page does not.
CDC estimates life expectancy with sickle cell disease is more than 20 years shorter than average, and quality-adjusted life expectancy more than 30 years shorter. In December 2023 the FDA approved the first two gene therapies for the disease, Casgevy and Lyfgenia. Casgevy was the first CRISPR-based therapy approved for any condition.
Sickle cell disease in the United States, as CDC reports it
Every row is a figure CDC states directly. The 100,000 estimate comes from two studies published in 2010; CDC states the exact number is unknown.
| Measure | Figure |
|---|---|
Source: CDC, Data and Statistics on Sickle Cell Disease, page reviewed 15 May 2024.
Methodology
Birth prevalence from state newborn screening programs, as compiled by the CDC NBSTRN (National Newborn Screening and Surveillance System). Population estimates extrapolated from birth prevalence applied to ACS 5-year Black population estimates, adjusted for age distribution and survival improvements. Treatment center locations from the Sickle Cell Disease Association of America directory and supplementary HRSA-designated sickle cell disease centers. Life expectancy estimates derived from published longitudinal cohort studies and CDC vital statistics mortality data.
Cite this page
APA
Black Health. (2026). Sickle Cell Disease in Black Americans. Black Health Data Hub. https://blackhealth.org/data/sickle-cell/
BibTeX
@misc{blackhealth_sicklecell_2026,
title = {Sickle Cell Disease in Black Americans},
author = {{Black Health}},
year = {2026},
url = {https://blackhealth.org/data/sickle-cell/},
note = {Accessed July 30, 2026}
}
Direct link
https://blackhealth.org/data/sickle-cell/
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License: CDC and FDA published figures, public domain