Sponsors (57)
Official title: To amend the Public Health Service Act with respect to preventing end-stage kidney disease, and for other purposes.
Introduced February 24, 2025 by Gus Bilirakis · Last progress February 24, 2025
The bill directs modest, targeted federal funding and programs to improve research, workforce capacity, and equity for rare kidney diseases—potentially improving diagnosis, care, and new treatments—while increasing federal spending, risking limited geographic reach and implementation delays, and raising privacy and equity concerns that will need careful management.
People with rare kidney diseases (and their families) are likely to see better diagnosis, treatment recommendations, and clinical care as federal centers, studies, training, and awareness efforts accelerate research and translate findings into practice.
Patients in underserved and rural areas and people overall are likely to gain greater access to nephrology care because the bill supports fellowships, workforce studies, and regional clinical/research infrastructure to expand specialist supply.
Patients and families—especially in rural and underserved communities—will receive outreach, education, mental-health resources, and public awareness that can promote earlier diagnosis and better disease management.
Taxpayers and federal budgets will face higher spending pressures (authorized center funding, study funding, fellowships, and experiments), which could crowd out other priorities or require offsets.
The authorized $6M/year (and similarly modest sums elsewhere) may be too small to fund a nationwide, geographically equitable network of centers and activities, limiting real-world reach for many patients.
The required studies and reports do not themselves change coverage or access; patients may wait for implementation, and recommended actions could require substantial additional spending to realize benefits.
Based on analysis of 5 sections of legislative text.
Creates NIH regional Centers of Excellence, funds nephrology fellowships, requires HHS studies and CMS experiments to improve rare kidney disease research, awareness, and treatment.
Creates new NIH-funded regional Centers of Excellence on rare kidney disease research, requires HHS to study testing, prevention, precision medicine, and treatment access for rare kidney diseases, expands nephrology training fellowships, and directs CMS to run experiments and report on ways to delay or avoid dialysis and transplant. It authorizes modest funding for center grants ($6M/year) and the HHS study ($1M/year) for FY2026–2030 and sets reporting deadlines to Congress.