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Sickle Cell Awareness Month

Sickle Cell Awareness Month is observed each September. The observance began in 1975 and received formal congressional recognition in 1983. The Sickle Cell Disease Association of America (SCDAA) is the leading national advocacy organization and coordinates the September campaign. The National Heart, Lung, and Blood Institute (NHLBI) at NIH leads federal research and awareness efforts.

Sickle cell disease is not a rare disease for Black Americans. It is a common one. About 1 in every 365 Black babies is born with sickle cell disease, the most prevalent inherited blood disorder in the United States. More than 100,000 people in the country live with it, and more than 90% of them are non-Hispanic Black or African American. About 1 in 13 Black Americans carries the sickle cell trait, meaning they have inherited one copy of the sickle cell gene. Most do not know it.

Sickle cell disease causes red blood cells to deform into rigid crescent shapes that block small blood vessels, causing episodes of severe pain (called crises), organ damage, stroke, acute chest syndrome, and anemia. The life expectancy for someone with sickle cell disease is more than 20 years shorter than the average U.S. life expectancy. For context: a child born with sickle cell disease in the United States has a quality-adjusted life expectancy more than 30 years shorter than a child without the condition.

Despite its scale and severity, sickle cell disease has historically received far less research funding per patient than diseases affecting predominantly white communities. Fewer than 50% of children and adolescents with sickle cell disease receive recommended annual stroke screening. Fewer than 50% of children aged 2 to 9 are on hydroxyurea, a medication with strong evidence for reducing crises. September is the time to close those gaps.

The data, plainly

What you can do this month

For individuals: - If you do not know your sickle cell trait status, ask your provider for a hemoglobin electrophoresis test. Newborn screening now catches sickle cell disease at birth in all 50 states, but trait status is not routinely disclosed to adults. - If you or your child has sickle cell disease, confirm that your care plan includes annual stroke screening (transcranial Doppler), regular ophthalmology visits, and hydroxyurea evaluation if appropriate. - Use the SCDAA's member organization finder to locate a sickle cell disease support group or specialty care center near you. - Participate in SCDAA's September campaign by illuminating your home or business in red, the color of sickle cell awareness, on September 19 (World Sickle Cell Day). - Advocate for increased NIH research funding for sickle cell disease. Historical underfunding relative to disease burden is documented; contact your congressional representative.

For providers: - Confirm that every child patient with sickle cell disease is receiving annual transcranial Doppler screening and that hydroxyurea has been offered and discussed. - The NHLBI's Evidence-Based Management of Sickle Cell Disease Expert Panel Report is available free online and provides current clinical guidance.

Resources

Sources

  1. CDC: Data and Statistics on Sickle Cell Disease
  2. NHLBI, NIH: September is National Sickle Cell Awareness Month
  3. Sickle Cell Disease Association of America: National Sickle Cell Awareness Month
  4. Office of Minority Health: National Sickle Cell Awareness Month

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