Sickle Cell Disease: Increasing Access and Improving Care
HHS' Sickle Cell Disease Initiative
The Sickle Cell Disease Initiative will focus on better coordination and collaboration in order to improve care through enhanced public health data as it promotes reliable access to quality care and services, development of new therapies, and biomedical and behavioral research. Read Full Initiative [PDF | 1.3MB]
An estimated 72,000 Americans live with Sickle Cell Disease (SCD) in the United States and approximately two million Americans, including one in 12 African Americans, carry the Sickle Cell Trait (SCT). While advances in health care have increased life expectancy for individuals with SCD, much more needs to be done to expand access and improve health care and outcomes.
Better coordination and collaboration across HHS agencies can significantly improve the care of people with SCD through enhanced disease surveillance, reliable access to quality care and services, innovative new drug development, and biomedical and behavior research.
Secretary Sebelius has charged HHS with making SCD a priority area of focus. The following operating and staff divisions have come together to develop the HHS SCD Initiative:
- Agency for Healthcare Research and Quality
- Centers for Disease Control and Prevention
- Centers for Medicare & Medicaid Services
- Food and Drug Administration
- Health Resources and Services Administration
- National Institutes of Health
- Office of Minority Health
- Office of the Assistant Secretary for Planning and Evaluation
HHS’ SCD Initiative
Below are specific actions that HHS will take to improve the health of people with SCD:
- Improve the care of adults and children with SCD through development and dissemination of evidence-based guidelines.
- Identify measures of quality of care for individuals with SCD and incorporate them into quality programs at HHS.
- Increase the availability of medical homes to improve access to quality routine care, including specialty care.
- Provide State Medicaid officials, health care providers and patients and advocacy groups with information about federal matching funds for education and services related to the care and treatment of SCD.
- Create a comprehensive database of individuals with SCD to facilitate surveillance and the conduct of clinical research.
- Work with the pharmaceutical industry to increase the pipeline of effective treatments for patients with SCD.
- Support research to improve health care for people with SCD - including pain and disease management - and to understand the clinical implications for individuals with sickle cell trait.
- Convene a roundtable to engage national sickle cell advocacy and expert organizations.
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