New Era of Preventing End-Stage Kidney Disease Act
Sponsored By: Representative Bilirakis
Introduced
Summary
Preventing end-stage kidney disease by creating NIDDK Centers of Excellence that fund research, expand provider and public education, and reach rural and underserved communities to better diagnose and treat rare kidney diseases.
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- Researchers and clinicians: Establishes NIDDK Centers of Excellence on Rare Kidney Disease Research and funds grants and cooperative agreements to study causes, symptoms, diagnosis, progression, and treatments, including genotype‑phenotype relationships. It bars use of QALYs, DALYs, or similar measures that discriminate against people with disabilities in value assessments.
- Patients and families: Permits centers to cover patient care costs needed for research and to provide education on diagnosis, routine urinalysis, genetic testing, renal diet, and mental and emotional health resources. The bill emphasizes outreach and information programs for rural and underserved communities and people diagnosed with rare kidney diseases.
- Health systems and federal coordination: Supports clinical training, continuing education, and demonstration projects for diagnostic, prevention, control, and treatment methods and requires coordination with other NIH institutes and the FDA. Each center may receive up to 5 years of support with possible 5‑year extensions under peer review, and the bill authorizes $6 million per year for FY2026–2030 to carry out these activities.
*If enacted, this bill would authorize $6 million per year for FY2026–2030, increasing federal spending by about $30 million over that five-year period.*
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Bill Overview
Analyzed Economic Effects
4 provisions identified: 4 benefits, 0 costs, 0 mixed.
Medicare tests to delay dialysis
If enacted, HHS would run Medicare experiments to test treatments for rare kidney disease. The focus would be on options that delay or avoid dialysis or transplant. HHS would also study how to raise public awareness of rare kidney disease. A report to Congress would be due within 24 months of enactment.
New centers for rare kidney disease
If enacted, NIH could fund regional Centers of Excellence for rare kidney disease. Centers could cover patient care needed for research and provide training and outreach, including urinalysis and genetic testing. Outreach would target rural and underserved communities and include renal diet and family support resources. Each center could get support for up to 5 years, with possible 5-year extensions after review. The bill would authorize $6 million each year for 2026–2030 and require research on genes and disease, while barring QALY/DALY-style measures.
National study on kidney testing
If enacted, HHS would study testing, prevention, precision medicine, and care for rare kidney disease. The study would review urinalysis, biopsies, genetic tests like APOL1, insurance and counseling access, and treatment patterns across Medicare, Medicaid, and private plans. HHS would consult with providers, patient groups, payors, and public health and coordinate with NIH, CMS, HRSA, and CMMI. A report to Congress would be due within 18 months. The bill would authorize $1 million each year for 2026–2030.
More kidney training for doctors
If enacted, grants could fund nephrology fellowships, including stipends for postgraduate trainees. Training would focus on preventing, diagnosing, and treating rare kidney disease, including APOL1 risks, and improving care for affected communities. The bill would also add kidney disease to required topics in primary care training programs.
Sponsors & CoSponsors
Sponsor
Bilirakis
FL • R
Cosponsors
Sewell
AL • D
Sponsored 2/24/2025
Rep. Miller, Carol D. [R-WV-1]
WV • R
Sponsored 2/24/2025
Peters
CA • D
Sponsored 2/24/2025
Balderson
OH • R
Sponsored 2/24/2025
Rep. Tonko, Paul [D-NY-20]
NY • D
Sponsored 2/24/2025
Rep. Schneider, Bradley Scott [D-IL-10]
IL • D
Sponsored 2/24/2025
Davis (IL)
IL • D
Sponsored 2/24/2025
Rep. Lieu, Ted [D-CA-36]
CA • D
Sponsored 3/3/2025
Rep. Dunn, Neal P. [R-FL-2]
FL • R
Sponsored 3/10/2025
Rep. Fitzpatrick, Brian K. [R-PA-1]
PA • R
Sponsored 3/11/2025
Crenshaw
TX • R
Sponsored 3/14/2025
Del. Norton, Eleanor Holmes [D-DC-At Large]
DC • D
Sponsored 5/7/2025
Rep. Suozzi, Thomas R. [D-NY-3]
NY • D
Sponsored 5/14/2025
Rep. Brownley, Julia [D-CA-26]
CA • D
Sponsored 5/19/2025
Obernolte
CA • R
Sponsored 5/19/2025
Rep. Lawler, Michael [R-NY-17]
NY • R
Sponsored 5/19/2025
Rep. Castor, Kathy [D-FL-14]
FL • D
Sponsored 6/3/2025
Davis (NC)
NC • D
Sponsored 6/6/2025
Rep. Wilson, Joe [R-SC-2]
SC • R
Sponsored 6/23/2025
Rep. Tlaib, Rashida [D-MI-12]
MI • D
Sponsored 6/30/2025
Johnson (GA)
GA • D
Sponsored 7/23/2025
Rep. Ryan, Patrick [D-NY-18]
NY • D
Sponsored 7/23/2025
Rep. Nadler, Jerrold [D-NY-12]
NY • D
Sponsored 7/25/2025
Rep. Garbarino, Andrew R. [R-NY-2]
NY • R
Sponsored 7/25/2025
Bishop
GA • D
Sponsored 7/25/2025
Rep. Correa, J. Luis [D-CA-46]
CA • D
Sponsored 7/29/2025
McGovern
MA • D
Sponsored 7/29/2025
Jackson (IL)
IL • D
Sponsored 8/1/2025
Crow
CO • D
Sponsored 8/5/2025
Soto
FL • D
Sponsored 8/12/2025
Lofgren
CA • D
Sponsored 8/12/2025
Rep. Green, Al [D-TX-9]
TX • D
Sponsored 8/12/2025
Rep. Ross, Deborah K. [D-NC-2]
NC • D
Sponsored 8/12/2025
Rep. Menendez, Robert [D-NJ-8]
NJ • D
Sponsored 8/19/2025
McBride
DE • D
Sponsored 8/26/2025
Rep. Kim, Young [R-CA-40]
CA • R
Sponsored 9/3/2025
Ocasio-Cortez
NY • D
Sponsored 9/3/2025
Rep. Vindman, Eugene Simon [D-VA-7]
VA • D
Sponsored 9/3/2025
Van Drew
NJ • R
Sponsored 9/30/2025
Ivey
MD • D
Sponsored 9/30/2025
Rep. Stevens, Haley M. [D-MI-11]
MI • D
Sponsored 10/21/2025
Rep. Carey, Mike [R-OH-15]
OH • R
Sponsored 10/21/2025
Rep. Flood, Mike [R-NE-1]
NE • R
Sponsored 11/4/2025
Cuellar
TX • D
Sponsored 11/4/2025
Rep. Vasquez, Gabe [D-NM-2]
NM • D
Sponsored 12/17/2025
Rep. Kiggans, Jennifer A. [R-VA-2]
VA • R
Sponsored 2/26/2026
Rep. Lee, Susie [D-NV-3]
NV • D
Sponsored 2/26/2026
Levin
CA • D
Sponsored 4/6/2026
Thompson (MS)
MS • D
Sponsored 4/6/2026
Rep. Chu, Judy [D-CA-28]
CA • D
Sponsored 4/6/2026
Rep. Clarke, Yvette D. [D-NY-9]
NY • D
Sponsored 4/6/2026
Escobar
TX • D
Sponsored 4/6/2026
Rep. Pocan, Mark [D-WI-2]
WI • D
Sponsored 4/6/2026
Rep. Bynum, Janelle S. [D-OR-5]
OR • D
Sponsored 4/6/2026
Thompson (CA)
CA • D
Sponsored 4/20/2026
Rep. Walkinshaw, James R. [D-VA-11]
VA • D
Sponsored 4/22/2026
Roll Call Votes
No roll call votes available for this bill.
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