Congress Passes Government Funding Bill with Big Wins for the SCD Community

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  • February 3, 2026

Feb. 3, 2025 – Today, the House of Representatives passed a package of bills providing funding for government programs for fiscal year (FY) 2026, which runs through September 30, 2026. The President is expected to quickly sign the bill into law. All three federal sickle cell disease programs were maintained with the same funding levels as years prior. This includes:

    • $8.205 million for the Health Resources and Services Administration’s (HRSA) Sickle Cell Disease Treatment Demonstration Program
    • $7 million for HRSA’s Sickle Cell Disease Newborn Screening Follow Up Program
    • $6 million for the Centers for Disease Control and Prevention’s (CDC) Sickle Cell Data Collection Program

The package also included other SCDAA priorities:

    • The Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act (H.R. 1796/S. 735) which reauthorizes the HRSA SCD Treatment Demonstration Program for another five years. SCDAA has been working to advance this legislation since it was introduced in the 118th Congress – thank you to all who have advocated for this legislation and a special thanks to our Congressional champions – Senators Tim Scott (R-SC) and Cory Booker (D-NJ) and Representatives John James (R-MI-10), Danny Davis (D-IL-07), Jen Kiggans (R-VA-2), Troy Carter (D-LA-2) and Marc Veasy (D-TX-33) for helping to get this bill across the finish line.
    • The Accelerating Kids’ Access to Care Act (H.R. 1509/S. 752) which creates a process by which to streamline access to out-of-state care for children with medically complex conditions, including sickle cell disease, insured by Medicaid or the Children’s Health Insurance Program (CHIP). This legislation was championed by Senators Chuck Grassley (R-IA) and Michael Bennet (D-CO) and Representatives Trahan (D-MA-3) and Miller-Meeks (R-IA-1).

    SCDAA would like to thank the many members of the sickle cell disease community who have engaged with Congress on these bills — we could not have done this without you! We are looking forward to more advocacy in 2026.

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