Terri Sewell and Gus Bilirakis introduce bipartisan bill to help rare kidney disease patients
Terri Sewell and Gus Bilirakis introduced the New Era for Preventing End-Stage Kidney Disease Act. This legislation, they say, would help transform the delivery of care to rare kidney disease patients by increasing community and healthcare provider awareness and education. Medicare spends over $84 billion annually providing critical care to patients with chronic kidney disease. $36 billion of that is spent just on patients with end-stage kidney disease (ESKD). While there have been many medical advances in the last sixty years, there has been little innovation in treatment options for kidney disease patients since the 1960s, when kidney dialysis and immunosuppressants became commonplace. That may be changing. Earlier this year, the FDA approved the first-of-its-kind non-immunosuppressive drug therapy for the rare kidney disease IgA Nephropathy. Patients sometimes 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, leading to costly dialysis, kidney transplants where an organ can even be found, and too frequently – death. “Far too many people living with rare kidney disease have trouble finding specialized care providers,” said Sewell. “Increasing awareness and education is crucial to caring for rare kidney disease patients, which is why I’m so proud to introduce the New Era For Preventing End Stage Kidney Disease Act. This legislation will make critical improvements to the way patients with rare kidney disease, especially those in underserved communities, access and receive care.” “Our life-saving legislation will help remove diagnostic and treatment barriers for many patients suffering with a rare disease,” said Rep. Bilirakis. “Through the establishment of Rare Kidney Disease Research Centers of Excellence and increased provider education efforts, we will empower providers to identify better the signs and symptoms of rare kidney disease, which will lead to improved treatment options and better patient outcomes.” Joshua Tarnoff is the CEO of NephCure – a tax-exempt 501 (c)(3) charity whose mission is to empower people with rare, protein-spilling kidney disease to take charge of their health while leading the revolution in research, new treatments, and care. “NephCure commends Congressman Gus Bilirakis and Congresswoman Terri Sewell for championing the New Era of Preventing End-Stage Kidney Disease Act and efforts to see a future in which improved diagnoses, access to treatments, and patient empowerment converge to reshape the trajectory of rare kidney diseases,” said CEO Tarnoff. “This bill can change how we take care of rare kidney disease patients through earlier detection and access to the right treatments, providing rare kidney disease education opportunities to doctors and patients, and allocating money for research. We are proud of the essential contributions the rare kidney disease community played in the development and introduction of the New Era of Preventing End-Stage Kidney Disease Act. We are committed to continue working alongside Congressman Bilirakis and Congresswoman Sewell to pass this important legislation in the 118th Congress.” 92,000 Americans are currently on the National Transplant List waiting for a kidney. Diabetes is the leading cause of kidney failure. Hypertension is the second leading cause. According to the National Institute for Health (NIH), 808,000 Americans are living with end-stage kidney disease. An estimated 1 in 7 American adults have chronic kidney disease. 90% of them are unaware of it, and most won’t learn of it until it is advanced. 51,000 Americans die annually from kidney failure. To connect with the author of this story or to comment, email brandonmreporter@gmail.com
