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 January 2025, and all 50 states may choose to begin participation anytime between January 2025 and January 2026. SCDAA looks forward to working with our community-based organizations and other stakeholders to advocate for state enrollment.

SCD Treatment Demonstration Program

The Request: $15 million in funding for the Sickle Cell Disease Treatment Demonstration Program (SCDTDP), which is overseen by the Health Services and Resources Administration, be included in the fiscal year (FY) 2024 appropriations bill.

The 2018 SCD law reauthorized the Sickle Cell Disease Treatment Demonstration Program (SCDTDP) to help coordinate service delivery for individuals with SCD, train health professionals, and provide access to genetic counseling and testing.

The reauthorization also calls for SCDTDP to develop best practices for the coordination of services for adolescents transitioning from pediatric to adult healthcare. Due to the lack of adequate protocols and care coordination, people with SCD struggle with the transition to adulthood.

CDC Sickle Cell Data Collection Program

The Request: $25 million in dedicated funding for the Centers for Disease Control and Prevention’s (CDC) Sickle Cell Data Collection program be included in the fiscal year (FY) 2024 appropriations bill.

Key findings and recommendations from the NASEM report on SCD highlight the critical need to establish a national system for SCD data collection.

Dedicated appropriations for SCD will allow the CDC to continue and expand state public health surveillance and support a national longitudinal registry of all persons with sickle cell disease.