A Public Health Priority
Sickle cell disease (SCD) is a common inherited blood disorder in the United States, affecting an estimated 90,000 to 100,000 Americans. SCD can lead to lifelong disabilities and reduce average life expectancy. In addition, the financial cost of SCD is high, both to people with the disease and to the health care system. Costs for hospital stays due to complications of SCD were estimated at $488 million in 2004.1
The Centers for Disease Control and Prevention (CDC), National Center on Birth Defects and Developmental Disabilities, Division of Blood Disorders considers SCD a major public health concern and is committed to conducting surveillance, raising awareness, and promoting health education.
Determining How Many People Have SCD
Currently, there are no data systems in the United States to determine the number of people who have SCD and other hemoglobinopathies (disorders affecting red blood cells), nor to fully describe how these conditions affect an individual’s health. The Centers for Disease Control and Prevention (CDC) is wrapping up two projects: the Registry and Surveillance System for Hemoglobinopathies (RuSH), and the Thalassemia Data Collection Project. Future efforts that focus on SCD and thalassemia will involve two new projects: Public Health Research, Epidemiology, and Surveillance for Hemoglobinopathies (PHRESH), and Blood Safety Surveillance among People with Blood Disorders.
To learn more about surveillance activities for SCD, please visit our Hemoglobinopathies Monitoring Activities page »
Educating People About SCD
CDC strives to educate people about SCD by providing free materials to families affected by the disease. These materials discuss how to live well with SCD, how to prevent infections, and when to see a doctor. In addition, CDC is working to raise awareness of SCD among the general public. This effort will be particularly helpful to groups such as teachers and other nonmedical professionals who care for or work with people with SCD.
To view, print, or download materials, please visit our Free Materials page »
Exploring Opportunities: SCD Working Group
CDC also has begun an agencywide SCD multidisciplinary working group to explore opportunities to address unmet needs in research, surveillance, and health education. The working group will unite the efforts and energies of all groups within CDC that are working on this disease.
The goals of the SCD working group are to:
- Provide information and increase awareness of SCD and SCT at CDC and among external audiences such as health care providers, community organizations, affected patients and their families, and the general public.
- Increase dialogue and collaboration between CDC and key partners in the sickle cell community, including other federal partners such as the National Institutes of Health and the Health Resources and Services Administration.
- Increase research and surveillance to determine the prevalence of SCD, develop better disease management guidelines, and more effectively monitor complications of the disease.
- Agency for Healthcare Research and Quality. Healthcare Cost and Utilization Project. Statistical Brief #21: Sickle Cell Disease Patients in U.S. Hospitals, 2004. http://www.hcup-us.ahrq.gov/reports/statbriefs/sb21.pdf. Accessed December 2, 2009.
- Page last reviewed: January 29, 2015
- Page last updated: January 29, 2015
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