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

This bill, titled the New Era of Preventing End-Stage Kidney Disease Act, aims to enhance research and care for rare kidney diseases to prevent the progression to end-stage kidney disease. It includes several key provisions:

Centers of Excellence for Rare Kidney Diseases

The bill establishes Centers of Excellence to focus on rare kidney diseases. These centers will:

• Conduct research on the causes, symptoms, and treatment of rare kidney diseases.
• Increase public awareness, especially in rural and underserved areas.
• Develop resources for training and clinical research related to these diseases.

The Director of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) will provide grants and cooperative agreements to entities working on these initiatives, funding up to $6 million annually from 2026 to 2030.

Research and Study Initiatives

The Secretary of Health and Human Services will carry out a comprehensive study examining:

• The effectiveness of routine urinalysis in diagnosing kidney disease.
• The quality of kidney biopsy and genetic testing for better diagnosis.
• Access to care and treatment patterns for affected populations.
• Factors influencing rare kidney disease and patient trust in providers.

A report on the findings of this study, along with recommendations, will be submitted to Congress within 18 months of the bill's enactment.

Provider Education and Training

The bill calls for enhancements in training for healthcare providers, particularly for nephrologists, to focus on:

• Understanding prevention and treatment issues specific to rare kidney diseases.
• Improving care quality for underrepresented communities.
• Increasing the number of trained nephrologists to meet care needs.

Awareness and Research on Treatment Methods

The legislation mandates experiments and studies aimed at:

• Evaluating treatments that could delay or eliminate the need for dialysis and transplants.
• Increasing public awareness about rare kidney diseases.

A report summarizing the outcomes and recommendations from these experiments will be submitted to Congress within 24 months of the bill's enactment.

Funding and Support Duration

The support for the Centers of Excellence will last for a maximum of five years, with the possibility of extending this period based on a positive review of the center's operations. Additionally, the bill authorizes annual appropriations for the mentioned initiatives for the specified fiscal years 2026-2030.

Relevant Companies

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