Advancing Sickle Cell Disease Care

ASH has been a catalyst and a partner in supporting, facilitating, and promoting a better understanding of sickle cell disease (SCD). From practical research progress and tools developed through the ASH Research Collaborative (ASH RC), to advocacy for comprehensive care, ASH continues to lead efforts to improve the state of SCD worldwide.

 

ASH’s SCD Initiative continued its longstanding work to improve outcomes for people with the disease. The end of 2023 brought the U.S. Food and Drug Administration's approval of two landmark gene therapies, which were the culmination of years of progress. View ASH’s interactive timeline to learn more about the history of innovation and progress in SCD.

 

ASH continued its prioritization of quality of care for SCD, initiating the development of a stem cell transplantation patient shared-decision aid, as well as two quality measures focused on equitable pain management for patients with SCD presenting to the emergency department. These initiatives will address important quality gaps for patients with SCD and are expected to be finalized in 2024.

“The approval of the first gene therapies for SCD represents a tremendous step forward for the SCD community, which has been historically overlooked and underfunded. While these new gene therapies are potentially life-changing for individuals living with SCD, they must be accessible to be effective.”

Robert A. Brodsky, MD

2023 ASH President

ASH has advocated for the SCD Comprehensive Care Act, which would fund a demonstration project for Medicaid programs to improve care for individuals with SCD, with a focus on young adults and pregnant women.

The ASH Research Collaborative (ASH RC) continues to build a brighter future for people living with SCD. The ASH RC Data Hub captures real-world data from more than 25,000 patients to accelerate research and enhance clinical care for people living with SCD. Similarly, the SCD Research Network builds relationships with the SCD community to ensure collaboration and connection.

Build Your Own SCD Binder

The Sickle Cell Disease Coalition compiled more than 100 resources for school and other health care leaders to support children with SCD in academic settings.
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SCD Away Elective Rotation

Fellows in their second or third year of fellowship gained practical experience treating patients through the SCD Away Elective Rotation, which embeds the fellow into an institution’s existing SCD program.

Women and SCD

ASH collaborated with the U.S. Centers for Disease Control and Prevention and other partners on a series of fact sheets focused on preconception, prenatal, and postpartum care for women living with SCD.
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Explore the 2023 Annual Report