The Sickle Cell Disease Comprehensive Care Act (S.904/HR.1672)

The Sickle Cell Disease Comprehensive Care Act directs CMS to create a demonstration program in up to 10 states to improve access to comprehensive, high-quality, outpatient care for SCD Warriors enrolled in Medicaid.

• Sponsors: Representatives Danny Davis (D-IL) and Michael Burgess (R-TX) and Senators Cory Booker (D-NJ) and Tim Scott (R-SC).
• Improve patient access to clinical, mental health, and ancillary and support services.
• Promote coordination through multidisciplinary teams.
• Provide support to community-based organizations, community health centers, hospitals, and academic health centers.
• Develop infrastructure to recruit providers and provide specialized training.
• Appropriations: $25M (planning grants) & $50M (CMS).

Centers for Medicare and Medicaid Innovation (CMMI) Cell and Gene Therapy Access Model

In early 2024, the Centers for Medicare and Medicaid Innovation (CMMI) announced the launch of their new Cell and Gene Therapy Access Model, a demonstration aimed at improving access to cell and gene therapy products in the Medicaid program. CMMI chose sickle cell disease (SCD) as the first indication for the model. The intent of the model is to provide access to the two recently approved gene therapy products for SCD for individuals insured by Medicaid. Participation by state Medicaid programs will be optional.

The Model will launch in 2025, and all 50 states may choose to begin participation anytime within a year of the Model’s launch. SCDAA looks forward to working with our community-based organizations and other stakeholders to advocate for state enrollment.