New Era of Preventing End-Stage Kidney Disease Act

Bill Number: H.R. 1518
Origin Chamber: House
Congress: 119th Congress, Session 1
Policy Area: Health
Status: Introduced
Latest Action: 2025-02-24: Referred to the Committee on Energy and Commerce, and in addition to the Committee on Ways and Means, for a period to be subsequently determined by the Speaker, in each case for consideration of such provisions as fall within the jurisdiction of the committee concerned.
Last Updated: 2026-04-23T08:06:51Z

AI-Generated Summary

Purpose

The "New Era of Preventing End-Stage Kidney Disease Act" (H.R. 1518) aims to reduce the progression of rare kidney diseases—conditions affecting the kidneys that are uncommon and often lead to end-stage kidney disease (a severe stage requiring dialysis or transplant)—through enhanced research, early detection, provider training, and public awareness. It focuses on improving diagnosis, treatment, and prevention, particularly for populations disproportionately affected, such as racial and ethnic minorities and rural communities.

Key Provisions

Centers of Excellence for Research (Section 2): Authorizes the Director of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK, part of the National Institutes of Health or NIH) to provide grants and cooperative agreements (funding partnerships) to public and nonprofit entities for establishing regional research centers. These centers will:
Conduct studies on causes, symptoms, diagnosis, progression, and treatments for rare kidney diseases, including glomerular diseases (conditions affecting the kidney's filtering units).
Raise public awareness, especially in rural and underserved areas.
Develop resources for clinical research, training, and demonstration of diagnostic, prevention, and treatment methods.
Funds can cover patient care costs for research, clinical training for health professionals, public information programs, and education on topics like renal diets, genetic testing (e.g., for the APOL1 gene, linked to higher risk in certain groups), lifestyle changes, and mental health support.
Research must study gene-disease links without using metrics that undervalue people with disabilities (e.g., quality-adjusted life years, a measure of health outcomes adjusted for quality of life).
Support lasts up to 5 years, renewable after peer review. Authorizes $6 million annually for fiscal years 2026–2030.
Study on Early Intervention and Testing (Section 3): Directs the Secretary of Health and Human Services (HHS) to conduct a study reviewing:
Benefits of routine urinalysis (urine testing) for early diagnosis and improved care.
Reliability of kidney biopsies (tissue sampling) for diagnosis.
Role of genetic and genomic testing (analyzing genes and DNA) in detection, including APOL1 testing, barriers like insurance coverage and access to specialists (e.g., genetic counselors), and strategies to expand testing.
Social, behavioral, and biological risk factors; treatment patterns under Medicare, Medicaid (government health programs for seniors/disabled and low-income individuals), and private insurance; access to nephrologists (kidney specialists); efforts to slow disease progression; and patient trust in providers among affected groups.
Requires a report to Congress within 18 months, developed with input from stakeholders like doctors, patient groups, and insurers. Authorizes $1 million annually for fiscal years 2026–2030.
Provider Education and Training (Section 4): Expands existing training programs under the Public Health Service Act (PHSA):
Adds kidney disease (including rare types) to primary care training for health professionals.
Creates nephrology fellowships (postgraduate training) to increase knowledge of prevention, diagnosis, and treatment for high-risk populations, improve care for minorities, and boost the number of nephrologists serving them, with focus on APOL1 prevalence.
Experiments and Awareness Initiatives (Section 5): Amends the Social Security Act to require the HHS Secretary to:
Run experiments testing treatments to delay or avoid dialysis and transplants for rare kidney disease.
Study ways to boost public awareness.
Submit a report to Congress within 24 months with legislative recommendations.

Significant Changes to Existing Law

Adds a new section (426A) to the PHSA to create dedicated research centers within NIDDK, which previously lacked specific focus on rare kidney diseases.
Modifies PHSA training provisions (sections 747 and 736) to explicitly include rare kidney disease education and fellowships, broadening scope from general health training.
Appends a new paragraph to Social Security Act section 1881(f), which governs end-stage renal disease programs under Medicare, to introduce experiments and awareness studies not previously mandated.
Introduces funding authorizations and coordination requirements across agencies, enhancing inter-agency collaboration without altering core program structures.

Potential Impacts

Government Agencies: Increases workload and funding for NIH/NIDDK (research), HHS (studies and coordination), Centers for Medicare & Medicaid Services (CMS, for Medicare/Medicaid insights), and Health Resources and Services Administration (HRSA, for training). Promotes efficiency through required coordination, potentially leading to new policies on testing coverage.
Citizens: Improves early detection and treatment access for rare kidney disease patients, especially in underserved, rural, or minority communities, potentially delaying end-stage disease and reducing healthcare costs. Enhances public education on prevention (e.g., via urinalysis and genetic testing), fostering trust in providers and better health outcomes.
International Relations: No direct impact, as the bill focuses on domestic U.S. health policy and research.

Main Stakeholders Affected

Patients and Families: Individuals with rare kidney diseases, particularly racial/ethnic minorities (e.g., those with APOL1 variants) and rural residents, who may gain better diagnosis, treatment, and support resources.
Healthcare Providers: Primary care doctors, nephrologists, genetic counselors, and other professionals benefiting from expanded training and fellowships to address gaps in care.
Research and Health Organizations: Universities, nonprofits, and patient advocacy groups receiving grants for centers; medical societies and public health experts consulted in studies.
Government and Payers: HHS, NIH, CMS, and private insurers, who must adapt to new research, testing recommendations, and potential coverage expansions.
Industry: Drug/device manufacturers and pharmacies involved in developing diagnostics and treatments for rare kidney diseases.

Notable Legal, Constitutional, or Political Implications

Legal: Establishes enforceable mandates for studies, reports, and funding, with peer-reviewed renewals ensuring accountability. Prohibits discriminatory research metrics, aligning with anti-discrimination laws like the Americans with Disabilities Act. Authorizations are advisory (not mandatory appropriations), depending on congressional budgeting.
Constitutional: No major issues; supports the federal government's role in public health under the Commerce Clause (regulating interstate health activities) without infringing on states' rights, though it encourages state/local involvement via consultations.
Political: Bipartisan sponsorship highlights focus on health equity and rare diseases, potentially advancing preventive care agendas. Could influence future Medicare/Medicaid reforms by addressing disparities, but implementation depends on funding and agency priorities.

This summary was generated by AI and may contain inaccuracies. Refer to the official source document for the authoritative text.

Sponsor

Rep. Bilirakis, Gus M. [R-FL-12]

Cosponsors (56)

Rep. Sewell, Terri A. [D-AL-7], Rep. Miller, Carol D. [R-WV-1], Rep. Peters, Scott H. [D-CA-50], Rep. Balderson, Troy [R-OH-12], Rep. Tonko, Paul [D-NY-20], Rep. Schneider, Bradley Scott [D-IL-10], Rep. Davis, Danny K. [D-IL-7], Rep. Lieu, Ted [D-CA-36], Rep. Dunn, Neal P. [R-FL-2], Rep. Fitzpatrick, Brian K. [R-PA-1], Rep. Crenshaw, Dan [R-TX-2], Del. Norton, Eleanor Holmes [D-DC-At Large], Rep. Suozzi, Thomas R. [D-NY-3], Rep. Brownley, Julia [D-CA-26], Rep. Obernolte, Jay [R-CA-23], Rep. Lawler, Michael [R-NY-17], Rep. Castor, Kathy [D-FL-14], Rep. Davis, Donald G. [D-NC-1], Rep. Wilson, Joe [R-SC-2], Rep. Tlaib, Rashida [D-MI-12], Rep. Johnson, Henry C. "Hank" [D-GA-4], Rep. Ryan, Patrick [D-NY-18], Rep. Nadler, Jerrold [D-NY-12], Rep. Garbarino, Andrew R. [R-NY-2], Rep. Bishop, Sanford D. [D-GA-2], Rep. Correa, J. Luis [D-CA-46], Rep. McGovern, James P. [D-MA-2], Rep. Jackson, Jonathan L. [D-IL-1], Rep. Crow, Jason [D-CO-6], Rep. Soto, Darren [D-FL-9], Rep. Lofgren, Zoe [D-CA-18], Rep. Green, Al [D-TX-9], Rep. Ross, Deborah K. [D-NC-2], Rep. Menendez, Robert [D-NJ-8], Rep. McBride, Sarah [D-DE-At Large], Rep. Kim, Young [R-CA-40], Rep. Ocasio-Cortez, Alexandria [D-NY-14], Rep. Vindman, Eugene Simon [D-VA-7], Rep. Van Drew, Jefferson [R-NJ-2], Rep. Ivey, Glenn [D-MD-4], Rep. Stevens, Haley M. [D-MI-11], Rep. Carey, Mike [R-OH-15], Rep. Flood, Mike [R-NE-1], Rep. Cuellar, Henry [D-TX-28], Rep. Vasquez, Gabe [D-NM-2], Rep. Kiggans, Jennifer A. [R-VA-2], Rep. Lee, Susie [D-NV-3], Rep. Levin, Mike [D-CA-49], Rep. Thompson, Bennie G. [D-MS-2], Rep. Chu, Judy [D-CA-28] and 6 more

Recent Actions

2025-02-24: Referred to the Committee on Energy and Commerce, and in addition to the Committee on Ways and Means, for a period to be subsequently determined by the Speaker, in each case for consideration of such provisions as fall within the jurisdiction of the committee concerned.
2025-02-24: Referred to the Committee on Energy and Commerce, and in addition to the Committee on Ways and Means, for a period to be subsequently determined by the Speaker, in each case for consideration of such provisions as fall within the jurisdiction of the committee concerned.
2025-02-24: Introduced in House
2025-02-24: Introduced in House

Bill Versions

New Era of Preventing End-Stage Kidney Disease Act — issued 2025-02-24 — PDF (11 pages)