NASEM Releases Sickle Cell Disease Report

The National Academies of Sciences, Engineering, and Medicine (NASEM) recently released a report titled “Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action,” examining the prevalence of and genetic and societal factors associated with sickle cell disease (SCD) and sickle cell trait. The report, which was commissioned by the U.S. Department of Health and Human Services (HHS), also evaluated the current state of care for people with SCD by looking at clinical practice guidelines, best practices, and programs available for patients.

The American Society of Hematology (ASH) commends NASEM on its report, with 2020 ASH President Stephanie Lee, MD, MPH, issuing the following statement: “Conquering SCD is a clear priority for ASH and the ASH Research Collaborative, and this NASEM strategic plan and blueprint for addressing SCD in the United States is an important milestone toward improvement. ASH applauds HHS and HHS’s Office of Minority Health for the foresight to commission this report to help set a path forward toward better care for the approximately 100,000 Americans with the disease and their loved ones.”

Specifically, the Society noted that the report prioritizes the need to further identify and address barriers to access to quality care, especially for adults with SCD, who often face challenges accessing appropriate and coordinated care when they have to switch from pediatric to adult providers. “Individuals living with SCD not only are burdened with the pain and disability from a chronic disease, but they also have few treatment options and most lack access to appropriate care due to a fragmented health care system and insufficient SCD knowledge and experience in the clinician workforce,” Dr. Lee said. “The status quo is unacceptable.”

ASH also applauded the committee for prioritizing the need for expanded data collection.

“ASH appreciates that NASEM engaged multiple stakeholders, including many ASH members working in SCD, to craft a blueprint for finally improving the health of this population,” Dr. Lee continued. “Now we must work together to enact these recommendations.”

Source: American Society of Hematology press release, September 10, 2020.