Bilirakis and Butterfield Introduce Bill to Help Rare Kidney Patients

Washington, DC: Earlier today Representatives Gus Bilirakis and G.K. Butterfield introduced the New Era for Preventing End-Stage Kidney Disease Act. This important legislation will help transform the delivery of care to rare kidney disease patients by increasing community and healthcare provider awareness and education. Each year, Medicare spends more than $84 billion providing critical care to patients with chronic kidney disease, including $36 billion on patients with end-stage kidney disease (ESKD). Unfortunately, there has been little to no innovation in treatment for kidney disease patients since the 1960s when dialysis and immunosuppressants became commonplace. There are no FDA-approved treatments for most rare kidney diseases, and many patients struggle to find a nephrologist well-versed in 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.

"Our life-saving legislation will help remove diagnostic and treatment barriers for many patients suffering with a rare disease," said Congressman Gus Bilirakis. "Through increased education, we will empower providers to better identify the signs and symptoms of rare kidney disease which will lead to improved treatment options and better patient outcomes."

"I'm proud to introduce the New Era for Preventing End-Stage Kidney Disease Act, which is a critical step toward the transformation of kidney disease care," said Butterfield. "For far too long, the rare kidney disease community has been overlooked, leaving many families in a chronic state of uncertainty as they navigate the many hurdles in getting diagnosed, treatment, and care. There is a new era of hope on the horizon for these families."

"We applaud the Rare Disease Caucus Co-Chairs Mr. Butterfield and Mr. Bilirakis for their leadership. For decades there have been no breakthrough treatments for individuals experiencing rare kidney disease. However, we believe we are entering a ‘New Era of Kidney Care,' and this comprehensive legislation will help forge a new frontier for innovation to thrive," said Josh Tarnoff, NephCure CEO. "Dialysis and transplants cannot be the only options. It is time to modernize treatments and the delivery of care to kidney patients and bring it into the 21st century."