Advocating to Advance Care for Sickle Cell Disease
Sickle cell disease (SCD) research and care remained a key priority for ASH in 2024. As the Society approaches the 10-year anniversary of its commitment to improving outcomes for individuals living with SCD in 2025, ASH formally launched the Center for Sickle Cell Disease Initiatives to ensure that ASH continues to advance sustainable improvement in the lives of people affected by SCD. The Center remains committed to serving as a convener and a catalyst working alongside multidisciplinary stakeholders to advance access to care, prioritize high-impact research, and support coordinated global action in SCD.
ASH Research Priorities
ASH released new comprehensive SCD research priorities, which highlight seven key areas where the SCD stakeholder community should focus their efforts to achieve maximum impact and patient benefit. The priorities were developed in collaboration with a wide range of researchers and health care providers and released for public comment to the patient community. They focus on unaddressed questions in the SCD research space, the answers to which would accelerate progress in basic, translational, and clinical research, improving the lives of individuals living with the disease.
"Our new research priorities aim to be a guide for future research and comprehensive care, ensuring better access and equity for all patients. It’s imperative that we continue to move the field forward to deliver more progress for people living with SCD."
Advocacy
ASH was a leader, partner, and advocate for SCD research and care through direct communication with Congress, the White House, and government agencies. ASH members held more than 175 meetings with congressional leaders and ASH led advocacy efforts with more than 90 organizations in support of the Sickle Cell Disease Comprehensive Care Act, which strives to address the critical need for high-quality comprehensive care for individuals living with the disease under Medicaid.
Other SCD advocacy highlights this year include:
- The Center for Medicare and Medicaid Innovation announced the , which aims to help people living with SCD on Medicaid access gene therapies.
- The Centers for Medicare & Medicaid Services (CMS) invited ASH to co-sponsor a to explore potential quality measures, interventions, and approaches to improve care for individuals living with SCD.
- The CMS Centers for Clinical Standards and Quality introduced an ASH-developed electronic for public comment. This measure will address the timely treatment of pain in the emergency department.
- The Department of Health and Human Services approved a project that will create a U.S. Core Date for Interoperability standard effort focused on SCD, which will define data elements and vocabulary for electronic health records and health care information technology systems for greater interoperability, with the goal of strengthening the data infrastructure for SCD.
Supporting the SCD Community and Clinicians
ASH developed resources for individuals living with SCD and their clinicians. Working in partnership with the Mayo Clinic Shared Decision Making National Resource Center, ASH launched a to support clinicians and patients as they consider transplantation as a treatment option.  
Real-World Evidence Consortium for SCD
The ASH Research Collaborative (ASH RC) partnered with the Reagan-Udall Foundation for the FDA to launch the , which will establish consensus on the use of electronic health record data to better understand the natural history and outcomes of people living with SCD – ultimately improving SCD research and patient outcomes.
SCD Research Network
The SCD Research Network, which was launched with the mission of fostering collaborative partnerships to advance research, at the 2024 ASH Annual Meeting that finds that the Data Hub accurately confirms SCD diagnoses. using the Data Hub found that disease-modifying therapies are under-prescribed for individuals living with SCD.
Explore the ASH 2024 Annual Report
