H.R. 1518 — New Era of Preventing End-Stage Kidney Disease Act

This section establishes regional NIDDK Centers of Excellence on Rare Kidney Disease Research—including primary glomerular disease—within the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), which conducts and supports research on kidney, urologic, and hematologic diseases, among others. The NIDDK director may award cooperative agreements or grants to public and private nonprofit entities for planning, establishing, strengthening, or operating such centers to (1) conduct research on the causes, etiology, symptoms, diagnosis, progression, and treatment of rare kidney diseases; (2) increase public awareness of these diseases, particularly in rural and underserved communities; and (3) develop resources for clinical research, training, and demonstration of diagnostic, prevention, control, and treatment methods. The section requires coordination of center activities with related efforts by other NIH institutes and the Food and Drug Administration; permits use of funds for research-related patient care costs, health professional training, public information programs, and targeted education on diagnosis (including urinalysis and genetic testing), prevention, treatment, renal diet, lifestyle, and mental health resources; and mandates that funded research study genotype-phenotype relations to disease progression while prohibiting use of quality-adjusted life years, disability-adjusted life years, or similar metrics that discriminate against individuals with disabilities in value and cost-effectiveness assessments. Center support periods may not exceed five years but are extendable in additional five-year increments following peer review. The section authorizes $6 million for each of FY2026 through FY2030.

This section directs the Secretary of Health and Human Services to conduct a study on testing, preventative care, precision medicine, and treatment for rare kidney disease—including the impact of routine urinalysis and kidney biopsy; utility of genetic and genomic testing (e.g., APOL1 gene testing), barriers thereto, and strategies to improve access and coverage; social, behavioral, and biological factors; treatment patterns under Medicare, Medicaid, and private insurance; access to nephrologists; efforts to slow progression to end-stage kidney disease; and patient trust among disproportionately affected populations—and, not later than 18 months after enactment, to submit a report to Congress on the study results and related recommendations, developed in consultation with relevant stakeholders and in coordination with the NIH, CMS, HRSA, and the Center for Medicare and Medicaid Innovation. The section authorizes appropriations of $1,000,000 for each of fiscal years 2026 through 2030.

This section makes two changes related to health professions training. (1) It revises primary care training grant requirements under Section 747(b)(3)(E) of the Public Health Service Act (42 U.S.C. 293k) to include training for individuals with kidney disease (including rare kidney disease) among targeted populations (i.e., adding such individuals after those with disabilities). (2) It amends Centers of Excellence grant requirements under Section 736(b) of the Public Health Service Act (42 U.S.C. 293)—which provide funding to designated health professions schools for programs supporting underrepresented minority individuals in health professions education—by adding a required use of funds to award fellowships (which may include stipends) for postgraduate nephrology training. (Thus, such fellowships aim to increase providers' knowledge of rare kidney disease prevention, diagnosis, and treatment for disproportionately impacted populations—including APOL1 gene prevalence—improve care quality for racial and ethnic minorities, and expand the nephrology workforce serving those groups.)

This section directs the Secretary of Health and Human Services to (1) conduct experiments evaluating methods for treating rare kidney disease, with particular attention to treatments that delay or eliminate the need for dialysis or transplantation; (2) conduct a comprehensive study of methods to increase public awareness of rare kidney disease; and (3) submit to Congress, not later than 24 months after enactment of the New Era of Preventing End-Stage Kidney Disease Act, a report on the experiments and study that includes legislative recommendations.