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HHS Announces Sickle Cell Disease Initiative
Office of the Director - May 27, 2011
U.S. Department of Health and Human Services (HHS) Secretary Kathleen Sebelius announced an HHS-wide initiative to improve care for people with sickle cell disease. The announcement came during a health disparities speech Secretary Sebelius delivered in New York, drawing a round of applause from the crowd of community and public health stakeholders.
An estimated 72,000 Americans live with sickle cell disease, while approximately two million carry the sickle cell trait. Forty years ago, almost 15 percent of children born with sickle cell disease died before the age of two, and many more died in their teens. Today, the life expectancy for people with sickle cell disease has dramatically increased, and the health problems many of them experience are less severe because of new treatments that have been developed with NIH support. However, not all patients—particularly adult patients—receive state-of-the-art care, and patients of all ages need better coordinated care as well as access to health care systems and providers who have the appropriate skill sets to manage these relatively uncommon blood disorders.
With this initiative, HHS seeks to significantly improve the lives of people with sickle cell disease by building upon existing activities and increasing collaborations across government agencies. The NIH (including the NHLBI), CDC, CMS, HRSA, FDA and AHRQ will work together over the coming years to meet a set of specific needs that include:
A hematologist with a longstanding interest in sickle cell disease, NHLBI Acting Director Susan B. Shurin, M.D., has been instrumental in bringing the HHS initiative to fruition. The NHLBI looks forward to participating in this important interagency collaboration and continuing to improve the lives of people with sickle cell disease and related conditions.
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