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

S4238

SENATE, No. 4238

STATE OF NEW JERSEY

222nd LEGISLATURE

�

INTRODUCED MAY 14, 2026

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.