PlainBillCongress, translated.Legislation. Context. Public interest.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.
Congressional Research Service
Version 00 · Introduced in House · Feb 24, 2025
New Era of Preventing End-Stage Kidney Disease Act
This bill establishes regional centers of excellence, postgraduate fellowships, and training for health professionals relating to the diagnosis and treatment of rare kidney disease. It also requires the Department of Health and Human Services (HHS) to conduct various studies on rare kidney disease.
Specifically, it authorizes the National Institute of Diabetes and Digestive and Kidney Diseases to award funding to public and private nonprofit entities for establishing regional centers of excellence that will increase public awareness, conduct research, and develop resources for diagnosing and treating rare kidney diseases. A center may receive such funding for up to five years, unless extended by the institute.
Showing the opening paragraphs of the official summary.
The bill also requires health professions schools receiving a grant from the Health Resources and Services Administration (HRSA) Centers of Excellence program to award fellowships for training on preventing, diagnosing, and treating rare kidney disease in disproportionately impacted populations.
Also, the bill expands the priorities of HRSA’s Primary Care Training and Enhancement program to include training for health care workers to care for individuals with kidney disease.
Additionally, HHS must conduct several studies and report to Congress on topics such as treating rare kidney disease in disproportionately affected populations, eliminating the need for dialysis or kidney transplants, and increasing public awareness of rare kidney disease.
People & committees
Rep. Bilirakis, Gus M. [R-FL-12] · R–FL
Legislative record
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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.
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 in House
Introduced in House
Primary sources
Text links open the official source. We also preserved the text version used in the PlainBill explanation below.
Source last updated: Oct 16, 2026. Consult Congress.gov for the current record.
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PlainBill explanation
Based on the full Introduced in House · 2025-02-24 text. This explanation has not received human editorial review. This overview describes the proposal’s major provisions; it does not establish what its real-world effects would be.
This proposal would support research on rare kidney diseases, require federal studies of testing and treatment, and expand education for health professionals. It would allow grants for regional research centers and require experiments on treatments that might delay or avoid dialysis or a kidney transplant. Patients, researchers, and health professionals would be affected, with particular attention to rural and underserved communities and populations disproportionately affected by rare kidney disease. The text proposes these activities; it does not establish that they would improve outcomes.
The Director of the Institute may enter into cooperative agreements with, and make grants to, public and private nonprofit entities
to increase public awareness of rare kidney diseases, particularly in rural and underserved communities
shall conduct a study on testing, preventative care, precision medicine, and treatment, with respect to rare kidney disease
to award fellowships, which may include stipends, for postgraduate training in the field of nephrology
increasing providers’ knowledge of issues related to prevention, diagnosis, and treatment of rare kidney disease for populations disproportionately impacted by the disease
The Secretary shall 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.
Section 1 would name the legislation the New Era of Preventing End-Stage Kidney Disease Act.
This Act may be cited as the New Era of Preventing End-Stage Kidney Disease Act.
Section 2 would let the director of the National Institute of Diabetes and Digestive and Kidney Diseases support regional rare kidney disease research centers through grants and cooperative agreements. Eligible recipients would be public and private nonprofit entities. Support could cover all or part of planning, establishment, strengthening, and basic operating costs; awards would follow policies established by the National Institutes of Health director.
The Director of the Institute 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, regional centers of excellence for rare kidney diseases, including primary glomerular disease.
A cooperative agreement or grant under paragraph (1) shall be entered into in accordance with policies established by the Director of the National Institutes of Health.
Funded centers would research rare kidney diseases, raise public awareness, and develop resources for clinical research, training, and demonstrations of methods for diagnosis, prevention, control, and treatment. The institute director would coordinate this work with related activities at other National Institutes of Health units and the Food and Drug Administration.
The purposes of the Centers of Excellence funded pursuant to paragraph (1) shall be— (A) to conduct research on the causes, etiology, symptoms, diagnosis, progression, and treatment of rare kidney diseases, including glomerular diseases; (B) to increase public awareness of rare kidney diseases, particularly in rural and underserved communities; and (C) to develop resources for clinical research into, training in, and demonstration of diagnostic, prevention, control, and treatment methods for, rare kidney diseases.
The Director of the Institute shall coordinate the activities under this section with similar activities that are related to rare kidney disease and conducted by other national research institutes, centers, and agencies of the National Institutes of Health and by the Food and Drug Administration.
Recipients could use center funding for patient care needed to conduct the research, professional training, and public information. They could also educate patients about kidney-related diet and lifestyle, genetic testing, urine testing, and mental and emotional health resources for families, with public outreach particularly directed to rural and underserved communities.
An entity that enters into a cooperative agreement or receives a grant under subsection (a) may use funds received through such agreement or grant— (1) to cover patient care costs required to conduct research described in subsection (a)(2)(A)
(A) clinical training and continuing education for health professionals and related personnel with respect to rare kidney diseases; and (B) information programs for the public, with respect to rare kidney diseases
(A) for education of members of the public, particularly through outreach to rural and underserved communities, on the diagnosis (including through routine urinalysis and through genetic testing), prevention, control, and treatment of rare kidney diseases; and (B) for education of individuals diagnosed with rare kidney diseases on renal diet and lifestyle, genetic testing, and programs to promote urinalysis, and on mental and emotional health resources for families of rare kidney disease patients.
Center-funded research would have to study how genetic makeup and observable traits relate to disease progression. For the populations studied, it could not consider quality-adjusted or disability-adjusted life years—measures combining life duration with health or disability—or similar mechanisms that discriminate against people with disabilities in assessments of value and cost-effectiveness.
Research conducted using funds awarded through a cooperative agreement or grant under this section— (1) shall include study of genotype-phenotype relation to disease progression; and (2) with respect the populations studied in such research, may 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.
Each center's support period could last no more than five years. The institute director could grant additional periods of up to five years each only after a technical and scientific peer review group reviewed the center's operations and recommended an extension.
The period of support for a center of excellence under subsection (a) may not exceed 5 years, except that such period may be extended by the Director of the Institute for additional periods of not more than 5 years for each center if— (1) the operations of such center have been reviewed by an appropriate technical and scientific peer review group established by the Director of the Institute; and (2) such group has recommended to the Director of the Institute that such period should be extended.
Section 2 would authorize $6 million for each fiscal year from 2026 through 2030 for the research-center program. This is permission for Congress to provide funding through appropriations, not an appropriation of the money itself.
To carry out this section, there are authorized to be appropriated $6,000,000 for each of fiscal years 2026 through 2030.
Section 3 would require the Health and Human Services Secretary to study rare kidney disease testing, preventive care, treatment tailored to patients' characteristics, and treatment generally. The study would examine routine urine testing, the quality and reliability of kidney biopsies, and the usefulness and appropriate use of genetic testing, including testing of the APOL1 gene.
The Secretary of Health and Human Services (in this section referred to as the Secretary) shall conduct a study on testing, preventative care, precision medicine, and treatment, with respect to rare kidney disease.
(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
The study would examine barriers to genetic testing, including insurance coverage and access to relevant professionals. It would also review strategies to increase diagnostic testing, improve diagnostic technology, and improve access to insurance coverage for those tests and technologies. These are study requirements, not a requirement that insurers cover them.
(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 to improve access to health insurance coverage of such diagnostic testing and technologies
The study would review social, behavioral, and biological factors leading to rare kidney disease. For disproportionately affected populations, it would also examine treatment patterns under Medicare, Medicaid, and private insurance; access to kidney specialists; efforts and recommendations to slow progression of end-stage kidney disease; and patient trust in treating providers.
(4) the social, behavioral, and biological factors leading to rare kidney disease; (5) treatment patterns associated with providing care, under the Medicare program under title XVIII of the Social Security Act (42 U.S.C. 1395 et seq.), the Medicaid program under title XIX of such Act (42 U.S.C. 1396 et seq.), 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.
The Secretary would have to report the Section 3 study's results to Congress within 18 months after enactment, with any recommendations the Secretary considers appropriate. The study and report would require consultation with relevant stakeholders, including providers, patient organizations, manufacturers, insurers and other payors, and public health bodies, as appropriate.
Not later than 18 months after the date of the enactment of this Act, the Secretary shall submit to the Congress a report on the results of the study under subsection (a), together with such recommendations as the Secretary determines to be appropriate.
the Secretary shall consult with relevant stakeholders, including health care providers, medical professional societies, State-based societies, public health experts, health educators, health professional organizations, drug and device manufacturers, patient organizations, pharmacists, payors, State and local public health departments, State medical boards, and other entities with experience in health care, public health, nephrology, and rare disease, as appropriate.
For the Section 3 study and report, the Secretary would coordinate with the specified leaders of the National Institutes of Health, Medicare and Medicaid administration, the Health Resources and Services Administration, and the Center for Medicare and Medicaid Innovation.
In carrying out the activities under subsections (a) and (b), the Secretary shall coordinate with the Director of NIH, the Administrator of the Center for Medicare & Medicaid Services, the Administrator of the Health Resources and Services Administration, and the Director of the Center for Medicare and Medicaid Innovation.
Section 3 would authorize $1 million for each fiscal year from 2026 through 2030 to carry out that section. It would authorize future appropriations rather than provide the money itself.
To carry out this section, there is authorized to be appropriated $1,000,000 for each of fiscal years 2026 through 2030.
Section 4 would add individuals with kidney disease, including rare kidney disease, to an existing primary care training provision. Because the existing provision is not reproduced, the supplied text does not establish the full effect of adding that group.
(a) Primary care training Section 747(b)(3)(E) of the Public Health Service Act (42 U.S.C. 293k(b)(3)(E)) is amended— (1) by striking and individuals and inserting , individuals; and (2) by inserting , and individuals with kidney disease (including rare kidney disease) after disabilities.
Section 4 would add a provision for postgraduate fellowships in nephrology, the medical specialty focused on kidneys, which could include stipends. Their stated purposes would be to improve providers' knowledge of rare kidney disease in disproportionately affected populations, including APOL1 prevalence; improve prevention, diagnosis, and treatment for racial and ethnic minorities; and increase the number of kidney specialists trained to serve those populations.
(b) Nephrology fellowships Section 736(b) of the Public Health Service Act (42 U.S.C. 293) is amended
(7) to 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
Section 5 would require the Secretary to conduct experiments evaluating rare kidney disease treatments, particularly treatments aimed at delaying or eliminating the need for dialysis or transplantation. It would also require a comprehensive study of ways to increase public awareness of rare kidney disease.
(9) (A) The Secretary shall 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. (B) The Secretary shall conduct a comprehensive study of methods to increase public awareness of rare kidney disease.
The Secretary would have to report on the Section 5 experiments and awareness study within 24 months after enactment. That report would include recommendations for legislative changes the Secretary finds necessary or desirable based on the work.
The Secretary shall submit to Congress, not later than 24 months after the date of the enactment of the New Era of Preventing End-Stage Kidney Disease Act, a report on the experiments and study conducted under subparagraphs (A) and (B). Such report shall include recommendations for legislative changes that the Secretary finds necessary or desirable as a result of such experiments and study.
The supplied official-actions snapshot, updated October 16, 2026, records introduction in the House on February 24, 2025, and referral that day to the Energy and Commerce and Ways and Means committees for provisions within their respective jurisdictions. This snapshot does not establish the bill's subsequent progress or enactment status.
Source snapshot updated 2026-10-16T08:05:44Z.
2025-02-24: Introduced in House
2025-02-24: 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.
A closer look
Reviewed version: Introduced in House · 2025-02-24. These findings describe provisions and who may benefit; they are not judgments of waste, corruption, or motive.
This review covers the supplied bill text. “None identified” does not rule out provisions in later versions or accompanying reports and disclosures.
Provisions outside the bill’s main subject, or policy changes attached to appropriations.
None identified in the reviewed text
No provision unrelated to the bill's main subject was identified in the complete supplied introduced text. This conclusion is limited to that version and does not establish the contents or attachment history of other versions or accompanying materials.
Spending directed to particular recipients or places outside ordinary competitive or formula-based allocation.
None identified in the reviewed text
No congressionally directed spending for a particular recipient or place was identified in the complete supplied introduced text. This text-only conclusion does not establish formal earmark status or absence in other versions or accompanying materials.
Narrow exceptions, exemptions, or preferential treatment that warrant a closer look.
None identified in the reviewed text
No materially narrow carve-out, special exemption, or preferential treatment meeting this category's definition was identified in the complete supplied introduced text. Coverage of intended program beneficiaries and protections against disability discrimination do not alone establish such a benefit. The conclusion is limited to this version.
Full text preserved for this analysis. Legislative record snapshot: Oct 16, 2026. How PlainBill uses AI