Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2025

This bill keeps a federal program going to help people with sickle cell disease. It shifts the focus from trying to prevent the disease itself to making sure people get better treatment and help to prevent and treat its complications, like pain crises and organ problems. It also lets the government give out grants and cooperative agreements (not just contracts) to run these projects. Congress also states that more research is needed on sickle cell and other inherited blood disorders to understand causes and find cures.

The bill increases funding to about $8.2 million each year from 2025 through 2029 for this effort, up from about $4.5 million per year in the past authorization. That money supports treatment programs, education, and coordination of care for people living with sickle cell disease and its complications.

Key points

• Who is affected: People with sickle cell disease and their families; hospitals, clinics, and community groups that support them.
• What changes: Focus moves to treatment and preventing/treating complications; funding rises; agencies can use grants, contracts, or cooperative agreements to support programs; Congress urges more research on inherited blood disorders.
• When: Funding runs for fiscal years 2025 through 2029.