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KING OF PRUSSIA, Pa. (April 15, 2022) — NephCure Kidney International (NephCure) applauds Friday’s introduction of the New Era of Preventing End-Stage Kidney Disease Act (H.R. 7506) sponsored 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.
“I’m proud to introduce the New Era of Preventing End-Stage Kidney Disease Act, which is a critical step toward the transformation of kidney disease care,” said Butterfield, lead sponsor of the legislation. “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.”
Rare kidney diseases contribute to the more than $84 billion spent on treating Medicare beneficiaries with chronic kidney disease, including 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. 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 diseases and face 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.
Many rare kidney disease patients struggle to find a nephrologist well-versed in their rare conditions who can provide an accurate diagnosis and expert care. FDA-approved treatments are lacking for most rare kidney diseases, but thanks to the 21st Century Cures Act we are on the cusp of a new era of rare kidney disease treatment and care — giving hope to thousands of patients and their families. By taking action now, Congress can promote health equity, save lives, and conserve valuable healthcare resources.
“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.”
Revolutionizing rare kidney disease treatment has been a longstanding priority for NephCure. In 2020, a core group of partners, comprised of NephCure, Travere Therapeutics and the American Association of Kidney Patients (AAKP), facilitated the first-ever Rare Kidney Disease Roundtable and the resulting white paper entitled “We Deserve Better: Revolutionizing Rare Kidney Disease,” which outlined urgent needs for rare kidney disease patients and their families and helped inform the creation of the New Era of Preventing End-Stage Kidney Disease Act.
NephCure will work with Congress to advance this bill as its key legislative priority. Patients and advocates are encouraged to join the NephCure Action Network, 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 diseases.
For more information about the New Era of Preventing End-Stage Kidney Disease Act, visit NephCure.org/NewEraAct.
About NephCure Kidney International
NephCure Kidney International’s mission is to accelerate research for effective treatments for rare forms of Nephrotic Syndrome and to provide education and support that will improve the lives of those affected by these protein-spilling kidney diseases. Founded in 2000 by a group of committed patient parents, NephCure has invested more than $40 million in kidney disease research and helped create a landscape where there are now more than 30 interventional drug trials for primary glomerular kidney diseases. NephCure is a U.S. exempt tax-exempt 501(c)(3) public charity.
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