H.R. 9169

[Congressional Bills 119th Congress]
[From the U.S. Government Publishing Office]
[H.R. 9169 Introduced in House (IH)]

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119th CONGRESS
2d Session
H. R. 9169

To support polycystic kidney disease research, and for other purposes.

_______________________________________________________________________

IN THE HOUSE OF REPRESENTATIVES

June 4, 2026

Ms. Wasserman Schultz (for herself, Mrs. Miller of West Virginia, Mr. 
Cleaver, and Mr. Bacon) introduced the following bill; which was 
referred to the Committee on Energy and Commerce

_______________________________________________________________________

A BILL

To support polycystic kidney disease research, and for other purposes.

Be it enacted by the Senate and House of Representatives of the 
United States of America in Congress assembled,

SECTION 1. SHORT TITLE.

This Act may be cited as the ``PKD Cures Act''.

SEC. 2. FINDINGS.

Congress finds the following:
(1) Polycystic kidney disease (in this section referred to 
as ``PKD'') is one of the most common life-threatening genetic 
diseases, affecting approximately 500,000 Americans and 
millions worldwide.
(2) PKD leads to end-stage renal disease, or kidney 
failure, in the majority of affected individuals, necessitating 
dialysis and transplantation.
(3) More than 5 percent of patients enrolled in the 
Medicare End-Stage Renal Disease program have kidney failure 
caused by cystic kidney disease, primarily PKD.
(4) End-stage renal disease and kidney failure attributable 
to cystic kidney diseases, like PKD, cost Medicare an estimated 
$3,000,000,000 annually.

SEC. 3. EXPANSION OF NIH RESEARCH ON POLYCYSTIC KIDNEY DISEASE.

Subpart 3 of part C of title IV of the Public Health Service Act 
(42 U.S.C. 285c et seq.) is amended by adding at the end the following:

``SEC. 434B. EXPANSION OF NIH RESEARCH ON POLYCYSTIC KIDNEY DISEASE.

``(a) Research Focus.--The Director of the Institute shall expand 
and intensify research activities regarding polycystic kidney disease 
(in this section referred to as `PKD'), including--
``(1) basic research to understand the genetic and 
molecular mechanisms of PKD;
``(2) translational research to identify biomarkers and 
potential therapeutic targets; and
``(3) clinical research to evaluate the safety and efficacy 
of new and existing treatments.
``(b) Collaboration.--In implementing the requirements of 
subsection (a), the Director of the Institute shall--
``(1) collaborate with other Federal agencies, academic 
institutions, and private sector stakeholders to accelerate the 
development of treatments and cures; and
``(2) support training programs to cultivate a workforce of 
researchers and clinicians specializing in PKD.
``(c) Priority.--In implementing the requirements of subsection 
(a), the Director of the Institute shall prioritize research proposals 
that demonstrate a clear potential to advance understanding and 
treatment of PKD.

``SEC. 434C. DEVELOPMENT OF COMPREHENSIVE PKD ROADMAP.

``(a) In General.--The Director of NIH shall establish a working 
group to develop a comprehensive roadmap for polycystic kidney disease 
(in this section referred to as `PKD') research and innovation.
``(b) Membership.--The Director of NIH shall appoint the members of 
the working group, who shall be--
``(1) experts in nephrology, human genetics, or molecular 
and cellular biology with expertise in the mechanistic pathways 
of PKD;
``(2) representatives of PKD patient advocacy 
organizations; or
``(3) such other stakeholders as the Director determines 
appropriate.
``(c) Responsibilities.--In developing the comprehensive roadmap 
referred to in subsection (a), the working group shall--
``(1) identify research gaps and priorities;
``(2) recommend strategies to enhance collaboration between 
the public and private sectors;
``(3) propose timelines and benchmarks for achieving key 
milestones in PKD innovation; and
``(4) develop a plan for integrating new technologies, such 
as artificial intelligence and precision medicine, into PKD 
research and care.
``(d) Report.--Not later than 24 months after the date of enactment 
of this section, the working group shall submit to Congress a report 
detailing the findings and recommendations of the working group, 
including the comprehensive roadmap referred to in subsection (a).''.
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