At the end of last week, U.S. Reps. Gus Bilirakis, R-Fla., and G.K. Butterfield, D-NC, showcased the “New Era for Preventing End-Stage Kidney Disease Act.”
Butterfield introduced the bill on Thursday with Bilirakis as a co-sponsor. On Friday, they highlighted what their bill would do.
“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,” Bilirakis’ office noted.
“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.”
“Our life-saving legislation will help remove diagnostic and treatment barriers for many patients suffering with a rare disease,” said 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.”
Bilirakis and Butterfield lead the Rare Disease Caucus.
The bill was sent to the U.S. House Energy and Commerce and the Ways and Means Committees. So far, there is no companion measure over in the U.S. Senate.
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