HR1518119th CongressWALLET

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.

Show full summary
  • 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.*

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

  • Miller (WV)

    WV • R

    Sponsored 2/24/2025

  • Peters

    CA • D

    Sponsored 2/24/2025

  • Balderson

    OH • R

    Sponsored 2/24/2025

  • Tonko

    NY • D

    Sponsored 2/24/2025

  • Schneider

    IL • D

    Sponsored 2/24/2025

  • Davis (IL)

    IL • D

    Sponsored 2/24/2025

  • Lieu

    CA • D

    Sponsored 3/3/2025

  • Dunn (FL)

    FL • R

    Sponsored 3/10/2025

  • Fitzpatrick

    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

  • Suozzi

    NY • D

    Sponsored 5/14/2025

  • Brownley

    CA • D

    Sponsored 5/19/2025

  • Obernolte

    CA • R

    Sponsored 5/19/2025

  • Lawler

    NY • R

    Sponsored 5/19/2025

  • Castor (FL)

    FL • D

    Sponsored 6/3/2025

  • Davis (NC)

    NC • D

    Sponsored 6/6/2025

  • Wilson (SC)

    SC • R

    Sponsored 6/23/2025

  • Tlaib

    MI • D

    Sponsored 6/30/2025

  • Johnson (GA)

    GA • D

    Sponsored 7/23/2025

  • Ryan

    NY • D

    Sponsored 7/23/2025

  • Nadler

    NY • D

    Sponsored 7/25/2025

  • Garbarino

    NY • R

    Sponsored 7/25/2025

  • Bishop

    GA • D

    Sponsored 7/25/2025

  • Correa

    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

  • Green, Al (TX)

    TX • D

    Sponsored 8/12/2025

  • Ross

    NC • D

    Sponsored 8/12/2025

  • Menendez

    NJ • D

    Sponsored 8/19/2025

  • McBride

    DE • D

    Sponsored 8/26/2025

  • Kim

    CA • R

    Sponsored 9/3/2025

  • Ocasio-Cortez

    NY • D

    Sponsored 9/3/2025

  • Vindman

    VA • D

    Sponsored 9/3/2025

  • Van Drew

    NJ • R

    Sponsored 9/30/2025

  • Ivey

    MD • D

    Sponsored 9/30/2025

  • Stevens

    MI • D

    Sponsored 10/21/2025

  • Carey

    OH • R

    Sponsored 10/21/2025

  • Flood

    NE • R

    Sponsored 11/4/2025

  • Cuellar

    TX • D

    Sponsored 11/4/2025

  • Vasquez

    NM • D

    Sponsored 12/17/2025

  • Kiggans (VA)

    VA • R

    Sponsored 2/26/2026

  • Lee (NV)

    NV • D

    Sponsored 2/26/2026

Roll Call Votes

No roll call votes available for this bill.

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