# Plain Language Summary: New Era of Preventing End-Stage Kidney Disease Act

This bill is designed to help catch and treat rare kidney diseases earlier, before they progress to end-stage kidney disease that requires dialysis or transplants. The government will fund specialized research centers across the country to study rare kidney diseases, particularly a condition called glomerular disease, and will work to improve how doctors diagnose and treat these conditions in communities that are disproportionately affected.

The bill creates several concrete programs. First, it establishes "Centers of Excellence" at medical institutions that will conduct research on rare kidney diseases and spread awareness about them, especially in rural and underserved areas. These centers will receive $6 million per year through 2030 to study how these diseases develop and progress, train doctors and nurses in kidney disease care, and educate patients about prevention and treatment options. Second, the bill requires the federal government to study how routine urine tests, genetic testing (particularly for the APOL1 gene), and other diagnostic tools can help catch kidney disease earlier. This study will also examine barriers to getting these tests covered by insurance and look at why some communities have less access to kidney specialists.

The bill also focuses on training more doctors to treat rare kidney diseases, particularly in communities most affected by these conditions. It adds kidney disease education to primary care training programs and creates fellowships for doctors specializing in nephrology (kidney medicine) who want to focus on serving racial and ethnic minorities. Finally, the bill directs Medicare to experiment with new treatment approaches that might delay or prevent the need for dialysis and transplants, and requires a report back to Congress within two years on what works best. Overall, the bill aims to shift focus from managing end-stage kidney disease to preventing it through earlier detection and better treatment options.

New Era of Preventing End-Stage Kidney Disease Act

Bilirakis, Gus M.

New Era of Preventing End-Stage Kidney Disease ActThis 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.&nbsp;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&nbsp;HRSA’s Primary Care Training and Enhancement program to include training for health care workers to care for individuals with kidney disease.Additionally,&nbsp;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.