The HHS Office of Minority Health (OMH) is committed to improving the quality of care and quality of life for patients with sickle cell disease (SCD). OMH works with partners at the federal, state, tribal, territory, and community level to develop and implement projects and activities to achieve this goal. More information about HHS’ work on Sickle Cell Disease can be found.
SCD is an inherited blood disorder that affects about 100,000 people in the United States and 20 million worldwide. It causes red blood cells to become rigid and shaped like the letter C. Regular red blood cells are circle shaped – or flat and like the letter O.
The shape of red blood cells of people with SCD makes it difficult for blood to pass through blood vessels. The effect can cause blockages that prevent oxygen and nutrients from reaching organs and tissues, which can cause pain, infections, and other complications. Some of the most severe complications can lead to stroke, organ damage, and death. The HHS Office of Minority Health named Sickle Cell Disease as one of (six) priority topics to raise awareness of the disorder and amplify the advances in medicine that improve the lives of individuals impacted.
Population Impact
In the United States, SCD affects more than 100,000 people, most of whom are of African ancestry or identify themselves as Black:
- About 1 in 13 Black or African American babies are born with sickle cell trait.
- About 1 in every 365 Black or African American babies are born with sickle cell disease.
Many people of Hispanic, Southern European, Middle Eastern, or Asian Indian backgrounds are also affected by sickle cell disease.
An estimated 2 million Americans carry the trait – but do not have the disorder. Both parents of individuals with SCD must carry the trait. SCD today is present in about 1 in 365 African American newborns and 1 in 16,000 Latino newborns.
Meet Some Individuals Impacted by Sickle Cell Disease (courtesy of NIHLB).
Embed video here or below on SCD from CMS.