Shaping Public Policy

ASH has been a strong voice for research funding and access to care. A few highlights include:

• A letter to the Centers for Medicare & Medicaid Service’s Innovation Center (CMMI) on the proposed Cell and Gene Therapy Access Model for Sickle Cell Disease.
• Written testimony to congressional appropriators in support of funding for the National Institutes of Health, Centers for Disease Control & Prevention, and Health Resources and Services Administration.
• A proposal to the ICD-10 Coordination and Maintenance Committee requesting the creation of new Z codes that would be used to indicate Duffy phenotype status in medical documentation to ensure that people who have lower ANC due to Duffy phenotype are accurately documented and not considered “abnormal.”

ASH hosted its second annual FDA/ASH workshop, which helped 20 participants – particularly those pursuing a career in academic medicine – gain a better understanding of regulatory medicine. The Advocacy Leadership Institute taught 25 participants about advocacy, health policy, the legislative process, and how to become engaged in the Society’s activities.

ASH and HHS co-hosted the ASH/FDA Collaboration: A Workshop on Regulatory Science in Hematology roundtable with federal and non-federal data registry leaders to explore how sickle cell disease data programs can be leveraged to avoid programmatic redundancies, reduce data burden for participating sites, and maximize data access, without compromising data quality. During the final Roundtable in June, HHS Secretary Xavier Becerra and Assistant Secretary for Health Admiral Rachel Levine, MD, provided the keynote talk demonstrating HHS’ highest level of support and commitment to SCD (photos below).