The sickle cell disease community has an important reason to celebrate. In early February, Congress passed a federal government funding package for fiscal year 2026 that preserves critical investments in sickle cell disease programs and advances long-fought legislative priorities. The bill, which is expected to be signed into law by the President, represents a meaningful victory for patients, families, advocates, and providers nationwide.
At the heart of this funding package is the continued support of all three federal sickle cell disease programs at their current funding levels. These programs play a vital role in improving care, advancing research, and strengthening data collection across the country. Funding 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, and $6 million for the Centers for Disease Control and Prevention’s (CDC) Sickle Cell Data Collection Program.
Maintaining funding stability is especially important for a community that has historically faced underinvestment and systemic barriers to care. These programs support early diagnosis, coordinated treatment, and data-driven decision-making—cornerstones of improving outcomes and quality of life for people living with sickle cell disease.
Beyond funding, the legislation includes major policy wins championed by the Sickle Cell Disease Association of America, Inc. (SCDAA). One of the most significant is the passage of the Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act. This legislation reauthorizes the HRSA Sickle Cell Disease Treatment Demonstration Program for an additional five years, ensuring continuity and long-term planning for essential services. The bill advanced with bipartisan support, thanks to dedicated Congressional champions and years of persistent advocacy
Another key provision is the Accelerating Kids’ Access to Care Act, which addresses a long-standing challenge for families of children with medically complex conditions, including sickle cell disease. The act creates a streamlined process for children insured by Medicaid or CHIP to access specialized out-of-state care when necessary. For many families, this change could mean faster access to life-saving expertise and fewer administrative barriers during already stressful times.
These accomplishments did not happen by chance. They are the result of tireless advocacy from patients, caregivers, healthcare professionals, and organizations who engaged lawmakers, shared their stories, and demanded action. SCDAA has rightly acknowledged that community engagement was essential to getting these bills across the finish line
As we look ahead to 2026, this moment serves as both a milestone and a reminder: sustained advocacy works. While there is still much to be done to achieve equity in sickle cell care, these legislative wins demonstrate what is possible when the community comes together with a unified voice.