New Era of Preventing End-Stage Kidney Disease Act - NephCure Kidney International ®

The New Era of Preventing End-Stage Kidney Disease Act (H.R. 7506) was introduced in the U.S. House of Representatives on April 14, 2022 by Reps. G.K. Butterfield and Gus Bilirakis. This legislation would help transform the delivery of care to rare kidney disease patients by increasing community and healthcare provider awareness and education, addressing kidney health disparities in communities of color, and advancing rare kidney disease research.

Rare kidney diseases contribute to the more than $84 billion spent on treating Medicare beneficiaries with chronic kidney disease and the $36 billion spent on treating people with End-Stage Kidney Disease (ESKD), yet there has been little to no innovation in treatment for kidney disease patients since the 1960s when dialysis and immunosuppressants became commonplace.

There are few FDA-approved treatments for most rare kidney diseases, and many patients struggle to find a nephrologist knowledgeable about their rare conditions who can provide an accurate diagnosis and expert treatment.

These treatment and diagnostic barriers, coupled with the lack of rare kidney disease awareness and education, often cause a delay in diagnosis that can result in a rapid decline in kidney function and, ultimately, kidney failure. For many rare kidney disease patients, their only options are dialysis, transplant or death.

Additionally, communities of color are disproportionately affected by rare kidney disease and a lack of adequate treatment options due to existing health disparities — Black Americans are 4-5 times more likely to develop ESKD than white Americans.

Revolutionizing rare kidney disease treatment has been a longstanding priority for NephCure. In 2020, NephCure and its partner organizations facilitated the first-ever Rare Kidney Disease Roundtable and resulting white paper entitled “We Deserve Better: Revolutionizing Rare Kidney Disease,” which outlined urgent needs in the rare kidney disease space, specifically for patients and their families.

NephCure is working with Congress to advance the New Era of Preventing End-Stage Kidney Disease Act as our key legislative priority. We encourage patients and advocates to join the NephCure Action Network (NCAN), a movement of patients, caregivers, physicians, and other partners who are committed to raising their voices to help educate policymakers on what’s important to those directly impacted by rare kidney disease.