Memo: August 2023 Policy Memo
This month’s highlights include a presentation for HRSA and a meeting with CMMI.
1. Sick Cells Co-Founder & President, Ashley Valentine, presented on community collaborations to the Health Resources and Services Administration (HRSA). Presentation highlights included:
a. Sick Cells’ policy and government affairs work
b. Collaborative efforts across the SCD community
c. Cross-industry partnerships centered on improving the lives of those living with SCD
2. Sick Cells met with staff from the Center for Medicare and Medicaid Innovation (CMMI) to provide feedback on the Cell & Gene Therapy (CGT) Access Model. Comments centered around:
a. Capturing patient-reported outcomes
b. Beneficiary engagement in model design & evaluation
c. Roles of CBOs in patient education and access to care
3. Sick Cells says goodbye to Emma Andelson, our Senior Program Manager (Government Affairs & External Relations). For future correspondence on policy or government affairs topics, please contact Mariah Scott (Research Coordinator) at mscott@sickcells.org
State Highlights
1. New York | A 2609 | State advising on sickle cell disease
a. Directs the minority health council to advise the Commissioner of Health regarding sickle cell disease
b. Encourages the increased information and communication about sickle cell disease screening and detection
c. Passed the Senate