Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action

Type: Consensus Study
Topics: Diseases, Health Services, Coverage, and Access, Select Populations and Health Equity
Board: Board on Population Health and Public Health Practice

Activity Description

Sickle cell disease (SCD) is one of the most common inherited blood disorders. According to the CDC, approximately 1 in 365 African American babies will be diagnosed with SCD, whereas the rate is 1 in 1,000 for their white counterparts. The Office of Minority Health (OMH), Department of Health and Human Services (HHS) has requested the assistance of the National Academies in developing a strategic plan and blueprint for addressing SCD in the United States. A special committee with expertise in the field will examine the epidemiology, health outcomes and complications of SCD, along with the economic burden and current practices for care. Attention will be given to the examination of existing federal, state, and local SCD related programs that address topics such as screening, monitoring and surveillance, treatment and care, research and more. The National Academies will provide guidance to OMH on the subject areas that should be made priorities for policies, programs, and research. The National Academies will also provide recommendations to OMH related to the barriers that exist in healthcare for SCD patients, limitations or possible opportunities to develop SCD specific registries and/or surveillance systems, new research innovations, and the importance of patient advocacy and community engagement groups.


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