New Era of Preventing End-Stage Kidney Disease Act
Summary
What This Bill Does
The New Era of Preventing End-Stage Kidney Disease Act builds a federal rare-kidney-disease prevention agenda. It directs the National Institute of Diabetes and Digestive and Kidney Diseases to support Centers of Excellence on Rare Kidney Disease Research through grants or cooperative agreements with nonprofit entities. Those centers would conduct research, support clinical training, help rural and underserved communities, and build research resources. HHS must study access to tests and preventive care, including urinalysis, kidney biopsy, genetic and genomic testing, APOL1 testing, and barriers such as insurance coverage, genetic counselors, and pathology capacity. CMS must also test Medicare models that could delay or eliminate dialysis or kidney transplant needs.
Who Benefits and How
Patients with rare kidney diseases benefit from dedicated research centers, better testing pathways, and prevention-focused Medicare experiments. NIDDK research grantees benefit from new grant and cooperative-agreement opportunities for regional Centers of Excellence. Rural communities benefit because the centers must address public awareness and service access outside major academic hubs. Nephrology clinicians benefit from better evidence on genetic testing, precision medicine, and treatment barriers.
Who Bears the Burden and How
NIDDK must design, award, and oversee the rare kidney disease research center program. HHS must complete a detailed study of testing access, preventive care, precision medicine, and workforce barriers. CMS must design Medicare experiments aimed at delaying dialysis or transplant needs. Federal taxpayers bear the cost of new research grants, studies, awareness work, and Medicare demonstrations.
Key Provisions
- Creates NIDDK Centers of Excellence on Rare Kidney Disease Research.
- Requires an HHS study of testing, preventive care, precision medicine, insurance, and workforce barriers.
- Directs Medicare experiments to delay or eliminate dialysis and kidney transplant needs.
- Funds research, training, public awareness, and clinical-resource work for rare kidney disease.
Evidence Chain:
This summary is generated from the full bill text using AI analysis. Expand "Detailed Analysis" below for identified beneficiaries/burden bearers with clause-level evidence links.
At a Glance
What This Bill Does
Creates rare kidney disease research centers, directs an HHS study on testing and preventive care, and requires Medicare experiments designed to delay or avoid dialysis and kidney transplant needs.
Key Policy Areas
Health Research, Medicare, Rare Disease
Primary Purpose
Creates rare kidney disease research centers, directs an HHS study on testing and preventive care, and requires Medicare experiments designed to delay or avoid dialysis and kidney transplant needs.
Policy Domains
Resolution provisions
Identified Gains
- Rare kidney disease patients
- NIDDK research grantees
- Rural communities
- Nephrology clinicians
Identified Costs
- NIDDK
- HHS
- CMS
- Federal taxpayers
Sponsors
Legislative Progress
In CommitteeMr. Bilirakis (for himself, Ms. Sewell, Mrs. Miller of West …
Referred to the Committee on Energy and Commerce, and in …
Introduced in House
Stakeholder Effects
cui bono?How this legislation distributes effects. Mention counts reflect frequency, not effect magnitude.
Bill Structure & Actor Mappings
Who is "The Secretary" in each section?
We use a combination of our own taxonomy and classification in addition to large language models to assess meaning and potential beneficiaries. High confidence means strong textual evidence. Always verify with the original bill text.
Learn more about our methodology