New Era of Preventing End-Stage Kidney Disease Act

This bill aims to prevent end-stage kidney disease by boosting early testing, treatment, and education—especially for rare kidney diseases. It creates regional Centers of Excellence to do research, raise public awareness (with outreach to rural and underserved areas), and train health workers. Grants can cover patient care costs tied to research and offer education for patients and families on diet, genetic testing, routine urine tests, and mental health resources. Research must be designed fairly and avoid measures that devalue people with disabilities. The centers will coordinate with NIH and the FDA. Funding for these centers is set for fiscal years 2026–2030.

The Department of Health and Human Services must study how to catch and slow rare kidney disease earlier, including the value of routine urinalysis, biopsies, and genetic testing like APOL1; barriers such as insurance coverage and access to counselors; and care patterns across Medicare, Medicaid, and private insurance. The study must also look at access to kidney doctors, what works to slow disease in hardest‑hit communities, and ways to build patient trust. A report to Congress is due within 18 months, with coordination across NIH, CMS, and HRSA. Funding for this study runs from 2026–2030.

Provider training expands too. HRSA programs would add kidney disease training for primary care teams and support nephrology fellowships to improve care in communities most affected and increase the number of trained kidney specialists.

Medicare will test treatments that could delay or remove the need for dialysis or a transplant, and HHS will study how to raise public awareness. A report on these efforts is due 24 months after enactment.

Key points

• Who is affected: People with or at risk for rare kidney diseases; families; rural and underserved communities; racial and ethnic minorities; primary care teams and kidney specialists.
• What changes: New research centers; grants for outreach and patient support; national studies on early testing and barriers; expanded training and fellowships; Medicare tests of treatments; public awareness efforts.
• When: Funding for centers and studies from FY 2026–2030; study report due in 18 months; Medicare/public awareness report due in 24 months.