Advocating to Advance Care for Sickle Cell Disease 

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.

• The Center for Medicare and Medicaid Innovation announced the Cell and Gene Therapy Access Model, 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 Town Hall on SCD Quality Measurement 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 quality measure 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 shared decision making tool to support clinicians and patients as they consider transplantation as a treatment option.