Sponsors (7)
The bill increases and broadens federal support for treating and researching sickle cell and related heritable blood disorders—likely improving care for affected individuals—while raising federal spending and risking a reduced emphasis on primary prevention.
People with sickle cell disease and the hospitals that serve them will get increased federal funding — $8,205,000 per year (FY2025–2029) — to support research, programs, and services for the disease.
People with sickle cell disease will have an expanded programmatic focus on treating the disease and managing its complications, which could improve patient outcomes and reduce morbidity.
Hospitals, state health agencies, nonprofits, and academic researchers will be able to access a wider range of federal support because the bill authorizes grants and cooperative agreements in addition to contracts, broadening who can receive funding.
U.S. taxpayers face higher federal spending obligations because the bill increases funding levels for these programs.
People at risk for sickle cell disease and state public-health programs could see less emphasis on primary prevention if implementation prioritizes clinical treatment and complication management over preventive activities.
Based on analysis of 2 sections of legislative text.
Broadens sickle cell program scope to include treatment and complication prevention, authorizes grants/cooperative agreements, and raises annual funding to $8,205,000 for FY2025–2029.
Official title: To amend the Public Health Service Act to reauthorize a sickle cell disease prevention and treatment demonstration program.
Introduced March 3, 2025 by John James · Last progress March 3, 2025
Expands and funds an existing federal program on sickle cell disease by broadening its language to cover treatment of sickle cell disease and prevention/treatment of its complications, authorizes grants and cooperative agreements, and raises the annual funding level to $8,205,000 for FY2025–2029. It also contains a nonbinding statement urging further research into causes and cures for heritable blood disorders.