Bill Text: NJ S4238 | 2026-2027 | Regular Session | Introduced
Bill Title: Establishes "End-Stage Kidney Disease Prevention and Innovation Act"; appropriates $10 million.
Sponsorship: Partisan Bill (Democrat 1)
Status: (Introduced) 2026-05-14 - Introduced in the Senate, Referred to Senate Health, Human Services and Senior Citizens Committee [S4238 Detail]
Download: New_Jersey-2026-S4238-Introduced.html
Sponsored by:
Senator BENJIE E. WIMBERLY
District 35 (Bergen and Passaic)
SYNOPSIS
Establishes "End-Stage Kidney Disease Prevention and Innovation Act"; appropriates $10 million.
CURRENT VERSION OF TEXT
As introduced.
An Act establishing the "End-Stage Kidney Disease Prevention and Innovation Act," and making an appropriation.
Be It Enacted by the Senate and General Assembly of the State of New Jersey:
1. This act shall be known and may be cited as the "End-Stage Kidney Disease Prevention and Innovation Act."
2. a. The Department of Health shall establish a Centers on Rare Kidney Disease Research in the department.
b. (1) The Commissioner of Health may enter into cooperative agreements with, and make grants to, public and private nonprofit entities to pay all or part of the cost of planning, establishing, or strengthening, and providing basic operating support for the Centers on Rare Kidney Disease Research.
(2) The Commissioner of Health shall establish an advisory board that includes nephrologists, patient advocates, academic researchers, and public health experts
c. The purposes of the Centers on Rare Kidney Disease Research shall be to:
(1) conduct research on the causes, etiology, symptoms, diagnosis, progression, and treatment of rare kidney diseases, including glomerular diseases;
(2) increase public awareness of rare kidney diseases, particularly in rural and underserved communities;
(3) develop resources for clinical research into, training in, and demonstration of diagnostic, prevention, control, and treatment methods for, rare kidney diseases;
(4) award fellowships, which may include stipends for postgraduate training in the field of nephrology, for the purposes of:
(a) increasing providers' knowledge of issues related to prevention, diagnosis, and treatment of rare kidney disease for populations disproportionately impacted by the disease, including the prevalence of the gene APOL1;
(b) improving the quality of rare kidney disease prevention, diagnosis, and treatment delivered to racial and ethnic minorities; and
(c) increasing the number of nephrologists trained to provide care to such populations;
(5) conduct experiments to evaluate methods for treating rare kidney disease, giving particular attention to treatments that would delay or eliminate the need for dialysis and transplant; and
(6) study methods to increase public awareness of rare kidney disease.
d. The Department of Health shall enter into a cooperative agreement with at least one entity that demonstrates a specialized capacity to serve disproportionately impacted minority and underserved communities, with priority given to in-State nonprofit hospitals, medical schools, and research institutions. An entity that enters into a cooperative agreement or receives a grant under this section may use funds received through such agreement or grant as follows:
(1) to cover patient care costs required to conduct research;
(2) for clinical training and continuing education for health professionals and related personnel with respect to rare kidney diseases;
(3) to develop informational pamphlets for the public with respect to rare kidney diseases;
(5) to educate members of the public, particularly through outreach to rural and underserved communities, on the diagnosis, prevention, control, and treatment of rare kidney diseases; and
(6) to educate individuals diagnosed with rare kidney diseases on renal diet and lifestyle, genetic testing, programs to promote urinalysis, and mental and emotional health resources for families of rare kidney disease patients.
e. Research conducted using funds awarded through a cooperative agreement or grant under this section:
(1) shall include the study of genotype-phenotype relation to disease progression; and
(2) with respect the populations studied in such research, shall not include any consideration of quality-adjusted life years or disability adjusted life years, or other similar mechanisms that discriminate against individuals with disabilities in value and cost-effectiveness assessments.
f. The Department of Health shall establish a competitive application process to effectuate the provisions of this section and objective criteria for awarding grants, including demonstrated nephrology expertise, research capacity, underserved population reach, and institutional readiness.
3. a. The Department of Health shall conduct a study on testing, preventative care, precision medicine, and treatment, with respect to rare kidney disease. The study shall review:
(1) the impact of routine urinalysis on the timely diagnosis of rare kidney disease and on the quality of patient care following a diagnosis of such disease;
(2) the quality and reliability of kidney biopsy in the diagnosis of rare kidney disease;
(3) the utility and appropriate use of genetic and genomic tests in detecting kidney disease, including,
(a) advances in genetic and genomic testing, and in particular testing of the APOL1 gene, and whether such testing may improve the diagnosis and treatment of rare kidney disease;
(b) barriers to genetic and genomic testing, such as diagnostic, predictive, presymptomatic testing, and DNA sequencing clinical services, including an analysis of any existing barriers related to health insurance coverage of such testing and access to genetic counselors, pathologists, and other relevant professions; and
(c) strategies to increase routine urinalysis and other diagnostic testing and to improve technologies to diagnose such disease, including genetic testing, and strategies to improve access to health insurance coverage of such diagnostic testing and technologies;
(4) the social, behavioral, and biological factors leading to rare kidney disease;
(5) treatment patterns associated with providing care under the Medicare program, the Medicaid program, and through private health insurance, to populations that are disproportionately affected by such disease;
(6) access to nephrologists among populations that are disproportionately affected by such disease;
(7) ongoing efforts and recommendations to slow the progression of end-stage kidney disease in populations that are disproportionately affected by rare kidney disease; and
(8) patient trust of treating providers among populations that are disproportionately affected by such disease.
4. Within 12 months following the expiration of this act, the Department of Health shall prepare and submit a report containing all relevant findings and recommendations to the Governor, and to the Legislature, pursuant to section 2 of P.L.1991, c.164 (C.52:14-19.1). In preparing this report, the Department of Health shall consult with relevant stakeholders, including health care providers, medical professional societies, public health experts, health educators, professional health organizations, drug and device manufacturers, patient organizations, pharmacists, payors, local public health departments, relevant State boards, and other entities with experience in health care, public health, nephrology, and rare disease, as appropriate.
5. There is appropriated from the General Fund to the Department of Health such sums as may be necessary to effectuate the purposes of this act, but not to exceed $10,000,000, as shall be determined by the Commissioner of Health.
6. This act shall take effect immediately and expire five years thereafter.
STATEMENT
This bill establishes the "End-Stage Kidney Disease Prevention and Innovation Act," and appropriates $10 million to effectuate the bill's purposes.
The Department of Health (department) is to establish a Centers on Rare Kidney Disease Research (centers) in the department.
The bill provides that the Commissioner of Health may enter into cooperative agreements with, and make grants to, public and private nonprofit entities to pay all or part of the cost of planning, establishing, or strengthening, and providing basic operating support for the centers.
The purposes of the centers is to: (1) conduct research on the causes, etiology, symptoms, diagnosis, progression, and treatment of rare kidney diseases, including glomerular diseases; (2) increase public awareness of rare kidney diseases, particularly in rural and underserved communities; (3) develop resources for clinical research into, training in, and demonstration of diagnostic, prevention, control, and treatment methods for, rare kidney diseases; (4) award fellowships, which may include stipends for postgraduate training in the field of nephrology; (5) conduct experiments to evaluate methods for treating rare kidney disease, giving particular attention to treatments that would delay or eliminate the need for dialysis and transplant; and (6) study methods to increase public awareness of rare kidney disease.
Under the bill, the department is to conduct a study on testing, preventative care, precision medicine, and treatment, with respect to rare kidney disease. The study is to review: (1) the impact of routine urinalysis on the timely diagnosis of rare kidney disease and on the quality of patient care following a diagnosis of such disease; (2) the quality and reliability of kidney biopsy in the diagnosis of rare kidney disease; (3) the utility and appropriate use of genetic and genomic tests in detecting kidney disease; (4) the social, behavioral, and biological factors leading to rare kidney disease; (5) treatment patterns associated with providing care under the Medicare program, the Medicaid program, and through private health insurance, to populations that are disproportionately affected by such disease; (6) access to nephrologists among populations that are disproportionately affected by such disease; (7) ongoing efforts and recommendations to slow the progression of end-stage kidney disease in populations that are disproportionately affected by rare kidney disease; and (8) patient trust of treating providers among populations that are disproportionately affected by such disease.
