Sponsors (48)
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Adds a new paragraph (9) to subsection (f) requiring the Secretary to (A) conduct experiments evaluating methods for treating rare kidney disease (with focus on delaying/eliminating need for dialysis and transplant), (B) conduct a comprehensive study on methods to increase public awareness of rare kidney disease, and (C) submit a report to Congress with recommendations no later than 24 months after enactment of the New Era of Preventing End-Stage Kidney Disease Act.
Amends subsection 747(b)(3)(E) of the Public Health Service Act by striking the phrase "and individuals" and inserting ", individuals", and by inserting additional text (the insertion text/location is not specified in the provided section).
Modifies subsection (b) by redesignating existing paragraph (7) as paragraph (8); altering paragraph (6)(B) (the text indicates a strike and replacement resulting in a semicolon); and inserting a new paragraph (7) authorizing the award of nephrology fellowships (which may include stipends) for postgraduate nephrology training with specified purposes related to rare kidney disease, APOL1 prevalence, and care for racial and ethnic minorities.
Creates new NIH centers focused on rare kidney disease research and outreach, launches an HHS study on diagnosis and treatment (including APOL1 genetic risks), expands training through nephrology fellowships, and directs Medicare to test treatment and public awareness strategies.
It authorizes $6 million per year for the centers and $1 million per year for the HHS study for fiscal years 2026–2030, requires an HHS report to Congress within 18 months, and requires a Medicare report within 24 months of enactment. The bill emphasizes rural and underserved areas and improving care for racial and ethnic minorities disproportionately affected by rare kidney disease.
Referred to the Committee on Energy and Commerce, and in addition to the Committee on Ways and Means, for a period to be subsequently determined by the Speaker, in each case for consideration of such provisions as fall within the jurisdiction of the committee concerned.
Introduced February 24, 2025 by Gus Bilirakis · Last progress February 24, 2025