Data & Statistics

Sickle cell disease (SCD) affects millions of people throughout the world and is particularly common among those whose ancestors came from sub-Saharan Africa; Spanish-speaking regions in the Western Hemisphere (South America, the Caribbean, and Central America); Saudi Arabia; India; and Mediterranean countries such as Turkey, Greece, and Italy.

In the United States1

The exact number of people living with SCD in the U.S. is unknown. However, the CDC in collaboration with the National Institutes of Health and 7 states (California, Florida, Georgia, North Carolina, New York, Michigan and Pennsylvania) are coordinating the Registry and Surveillance System for Hemoglobinopathies(RuSH) project to learn about the number of people living with SCD to better understand how the disease impacts their health.

It is estimated that:

• SCD affects 90,000 to 100,000 Americans.
• SCD occurs among about 1 out of every 500 Black or African-American births.
• SCD occurs among about 1 out of every 36,000 Hispanic-American births.
• SCT occurs among about 1 in 12 Blacks or African Americans.

Comprehensive Care

• People with SCD have less access to comprehensive team care than people with genetic disorders such as hemophilia and cystic fibrosis. [Read article]

Mortality

• Sickle cell-related death among Black or African-American children younger than 4 years of age fell by 42% from 1999 through 2002. This drop coincided with the introduction in 2000 of a vaccine that protects against invasive pneumococcal disease.
  [Read summary]
• Relative to the rate for the period 1983 through 1986, the SCD mortality rate for the period 1999 through 2002 decreased by:
  • 68% at age 0 through 3 years;
  • 39% at age 4 through 9 years; and
  • 24% at age 10 through 14 years.
    [Read summary]
• Mortality Among Children with Sickle Cell Disease Identified by Newborn Screening During 1990-1994 — California, Illinois, and New York:
  • Among the children with Hb SS disease, 1% died as a result of SCD-related causes during the first 3 years of life.
  • In California and Illinois, by the end of 1995, the cumulative mortality rate was 1.5 per 100 Black or African-American children with SCD. The equivalent cumulative mortality rate for all Black or African-American infants born during this period in California and Illinois was 2.0 per 100 Black or African-American newborns.
    [Read article]

Economic Costs

• During 2005, medical expenditures for children with SCD averaged $11,702 for children with Medicaid coverage and $14,772 for children with employer-sponsored insurance. About 40% of both groups had at least one hospital stay.
  [Read summary]
• SCD is a major public health concern. From 1989 through 1993, an average of 75,000 hospitalizations due to SCD occurred in the United States, costing approximately $475 million.
  [Read summary]

References

1. National Heart, Lung, and Blood Institute. Disease and conditions index. Sickle cell anemia: who is at risk? Bethesda, MD: US Department of Health and Human Services, National Institutes of Health, National Heart, Lung, and Blood Institute; 2009. Available from:http://www.nhlbi.nih.gov/health/dci/Diseases/Sca/SCA_WhoIsAtRisk.html