PKD Cures Act
- Bill Number
- H.R. 9169
- Origin Chamber
- House
- Congress
- 119th Congress, Session 2
- Policy Area
- Health
- Status
- Introduced
- Latest Action
- 2026-06-04: Referred to the House Committee on Energy and Commerce.
- Last Updated
- 2026-07-10T08:06:22Z
AI-Generated Summary
PKD Cures Act (H.R. 9169) Summary
Purpose
The legislation aims to expand federal support for research on polycystic kidney disease (PKD), a genetic condition that often leads to kidney failure. It directs the National Institutes of Health (NIH) to intensify efforts toward understanding, treating, and potentially curing the disease, while also addressing related Medicare costs.
Key Provisions
- Findings: Notes that PKD affects about 500,000 Americans and millions globally, causes kidney failure in most cases, accounts for over 5% of Medicare End-Stage Renal Disease patients, and costs Medicare an estimated $3 billion annually.
- Expansion of NIH Research (New Section 434B): Requires the NIH to broaden PKD research in three areas: basic studies on genetic and molecular causes; translational work to find biomarkers and treatment targets; and clinical trials on treatment safety and effectiveness. The NIH must collaborate with other agencies, academic institutions, and private groups; support researcher training; and prioritize projects with strong potential to advance PKD understanding and care.
- Comprehensive PKD Roadmap (New Section 434C): Directs the NIH Director to form a working group of nephrology, genetics, and biology experts, plus PKD patient advocates and other stakeholders. The group must identify research gaps, suggest public-private collaboration strategies, set timelines and milestones, and plan integration of technologies like artificial intelligence and precision medicine. A report with findings and the roadmap must be submitted to Congress within 24 months of enactment.
Significant Changes to Existing Law
This bill amends the Public Health Service Act by adding two new sections (434B and 434C) under the National Institute of Diabetes and Digestive and Kidney Diseases. It creates specific statutory requirements for PKD-focused research expansion and roadmap development, which were not previously mandated in this form.
Potential Impacts
- Government Agencies: Increases directed activities and coordination at the NIH, potentially requiring reallocation of resources within the Department of Health and Human Services.
- Citizens: Could lead to improved diagnostic tools, treatments, or cures for PKD patients, with indirect effects on Medicare spending if kidney failure rates decline.
- International Relations: No direct provisions or effects addressed in the bill.
Main Stakeholders Affected
- Individuals with PKD and their families.
- PKD patient advocacy organizations.
- NIH researchers and clinicians specializing in kidney disease.
- Academic institutions and private-sector entities involved in biomedical research.
- Congress, through oversight of the required report.
Notable Legal, Constitutional, or Political Implications
The bill imposes targeted research mandates on a federal agency without altering broader constitutional authorities or creating new regulatory frameworks. It emphasizes public-private collaboration and technology integration but introduces no enforcement mechanisms beyond the reporting requirement.
This summary was generated by AI and may contain inaccuracies. Refer to the official source document for the authoritative text.
Sponsor
Rep. Wasserman Schultz, Debbie [D-FL-25]
Cosponsors (5)
Rep. Miller, Carol D. [R-WV-1], Rep. Cleaver, Emanuel [D-MO-5], Rep. Bacon, Don [R-NE-2], Rep. Wilson, Joe [R-SC-2], Rep. Van Drew, Jefferson [R-NJ-2]
Recent Actions
- 2026-06-04: Referred to the House Committee on Energy and Commerce.
- 2026-06-04: Introduced in House
- 2026-06-04: Introduced in House
Bill Versions
- PKD Cures Act — issued 2026-06-04 — PDF (4 pages)