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Bill

Bill

A 4924

Establishes "End-Stage Kidney Disease Prevention and Innovation Act"; appropriates $10 million.

2026-2027 Regular Session Introduced by Shanique Speight

Creates Centers on Rare Kidney Disease Research to fund research, training, and outreach aimed at delaying dialysis and improving care for underserved populations.

Introduced, Referred to Assembly Health Committee
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Bill Summary · A 4924

Overview

Bill A 4924 (New Jersey, 2026) establishes the End-Stage Kidney Disease Prevention and Innovation Act and appropriates up to $10 million over five years to implement it. The Department of Health would create Centers on Rare Kidney Disease Research to advance research, education, and outreach related to rare kidney diseases, with a focus on populations disproportionately affected.

Main purpose and intent

  • Create a formal program and infrastructure to advance understanding, prevention, and treatment of rare kidney diseases, including those leading to end-stage kidney disease (ESKD).
  • Improve diagnosis, prevention, and management, particularly in rural and underserved communities.
  • Support workforce development and patient education to increase the supply of nephrologists and informed care for affected populations.
  • Fund research and pilot initiatives aimed at delaying or preventing dialysis and transplant needs.

Key provisions and changes

  • Establishment of Centers on Rare Kidney Disease Research within the Department of Health.
  • Authority for the Commissioner of Health to:
    • Enter into cooperative agreements and grant funding to public and private nonprofit entities to plan, establish, strengthen, and provide operating support for the centers.
    • Create an advisory board comprising nephrologists, patient advocates, researchers, and public health experts.
  • Center objectives (six core purposes):
    1. Research on causes, etiology, symptoms, diagnosis, progression, and treatment of rare kidney diseases (including glomerular diseases).
    2. Increase public awareness, with emphasis on rural underserved areas.
    3. Develop resources for clinical research, training, and demonstration of diagnostic, prevention, control, and treatment methods.
    4. Award fellowships (potentially stipends) for postgraduate nephrology training, focusing on:
      • Prevention, diagnosis, and treatment for populations disproportionately affected (e.g., APOL1 gene considerations).
      • Improving care quality for minority populations.
      • Increasing the number of nephrologists serving these populations.
    5. Conduct experiments to evaluate treatment methods, prioritizing approaches that delay/eliminate dialysis or transplantation.
    6. Study methods to raise public awareness about rare kidney disease.
  • Funding and use of grants:
    • Partnerships with entities that serve minority and underserved communities, prioritizing in-State nonprofits, medical schools, and research institutions.
    • Allowable uses of funds include: patient care costs for research, clinical training and education, public information materials, public outreach (especially rural/underserved areas), and education for patients on renal diet, genetic testing, urinalysis programs, and related mental health resources.
  • Research considerations for funded work:
    • Include genotype-phenotype analyses related to disease progression.
    • Do not use quality-adjusted life years (QALYs) or disability-adjusted life years (DALYs) or similar metrics that discriminate against individuals with disabilities in evaluating research value/cost-effectiveness.
  • Competitive grant process:
    • Establish competitive application procedures and objective criteria for awarding grants, emphasizing nephrology expertise, research capacity, reach to underserved populations, and institutional readiness.
  • Department of Health study (within the bill):
    • A separate study on testing, preventive care, precision medicine, and treatment for rare kidney disease.
    • Topics include routine urinalysis impact, biopsy quality, utility of genetic/genomic testing (e.g., APOL1), barriers to testing and genetic counseling, strategies to expand testing and insurance coverage, social/behavioral/biological risk factors, Medicare/Medicaid/private payer treatment patterns, access to nephrologists, efforts to slow progression of ESKD in affected populations, and patient trust.
  • Reporting:
    • Within 12 months after expiration of the act, the Department must submit findings and recommendations to the Governor and Legislature, consulting a broad range of stakeholders (healthcare providers, professional societies, public health experts, patient organizations, payors, state boards, etc.).
  • Appropriation and duration:
    • Up to $10 million General Fund appropriation to the Department of Health to implement the act.
    • Act takes effect immediately and expires five years after enactment.

Who and what would be affected

  • Department of Health: Responsible for establishing Centers on Rare Kidney Disease Research and overseeing cooperative agreements and grants.
  • Public and private nonprofit entities: Eligible to receive grants or enter cooperative agreements to support centers.
  • Health professionals, especially nephrologists: Beneficiaries of fellowships, training, and education programs; involved in research and clinical care.
  • Patients and communities: Especially racial/ethnic minority groups and residents of rural or underserved areas, through increased awareness, education, and improved access to diagnostic testing and care.
  • State health system stakeholders: Hospitals, medical schools, research institutions, patient advocacy groups, insurers, and public health entities involved in collaboration, training, and dissemination of information.

Procedural and timeline aspects

  • Implementation timeline:
    • Centers to be established after enactment; a competitive grant process to be established by the Department.
    • A comprehensive study on testing and care to be conducted concurrently.
  • Reporting timeline:
    • A final report with findings and recommendations due within 12 months following expiration of the act (i.e., 5 years after enactment).
  • Expiration:
    • The act expires five years after enactment unless renewed or extended by future legislation.

Potential impact (policy and practice)

  • Creates a formal, state-backed framework to accelerate research and practical interventions for rare kidney diseases and ESKD.
  • Aims to reduce disparities by prioritizing minority and underserved communities and supporting local in-state institutions.
  • Encourages collaboration among clinicians, researchers, patient advocates, and public health officials.
  • Emphasizes prevention and delaying dialysis/transplant through research and education.
  • Establishes safeguards against biased evaluative metrics (avoidance of QALYs/DALYs in research assessments).

Compiled from official sources — confirm details with the bill’s official record.

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