The National Academies of Science, Engineering, and Medicine (NASEM) Report:
Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action
Under commission by the United States Department of Health and Human Services (HHS) Office of Minority Health (OMH), the National Academies of Sciences, Engineering, and Medicine (NASEM) convened an ad hoc committee of experts to develop a strategic plan and blueprint to address sickle cell disease in the United States. The committee examined the epidemiology, health outcomes, genetic implications, and societal factors associated with SCD and sickle cell trait (SCT), including serious complications associated with SCD, existing guidelines and best practices for care of patients with SCD, and public programs related to SCD treatment and care.
In September of 2020, the ad hoc committee published a consensus study report based on their collective research findings, conclusions, and evidence-based recommendations to advance sickle cell care. The report ends with an outline of seven foundational principles and eight key strategies the ad hoc committee recommends the U.S. pursue to foster long, healthy, and productive lives for people living with SCD and those with SCT. A diagram of this strategic plan is pictured below:
Though these principles and strategies were developed under the U.S. context, much of the information and calls to action within the report speak to key priorities and needs for the global sickle cell community. As such, the SCDC slightly modified these recommendations for international inclusivity and included a ninth strategy on newborn screening. Please see these strategies adapted for international applicability by the SCDC listed below; modifications from the NASEM report are designated by an asterisk (*):
- Strategy A: Establish national systems to collect and link data to characterize the burden of disease, outcomes, and the needs of those with SCD across the life span.
- Strategy B: Establish organized systems of care that ensure both clinical and nonclinical supportive services to all persons living with SCD.
- Strategy C: Strengthen the evidence base for interventions and disease management and implement widespread efforts to monitor the quality of SCD care.
- Strategy D: Increase the number of qualified health professionals providing SCD care.
- Strategy E*: Improve SCD awareness and strengthen advocacy efforts through targeted education and strategic partnerships among key stakeholders.
- Strategy F: Address barriers to accessing current and pipeline therapies for SCD.
- Strategy G: Implement efforts to advance understanding of the full impact of SCT on individuals and society.
- Strategy H: Establish and fund a research agenda to inform effective programs and policies across the life span.
- Strategy I*: Establish and strengthen national newborn screening programs and care protocol for diagnosed babies.
For more information about the NASEM report, Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action, please visit: https://www.nationalacademies.org/our-work/addressing-sickle-cell-disease-a-strategic-plan-and-blueprint-for-action.
