Pasco Reporter

Washington, DC - Representatives Gus Bilirakis (R-FL) and Terri Sewell (D-AL) have introduced the New Era for Preventing End-Stage Kidney Disease Act, a bill aimed at improving care for patients with rare kidney diseases. The legislation focuses on increasing awareness and education among healthcare providers and communities to transform the delivery of care to these patients.

According to the article, Medicare currently spends more than $84 billion each year on providing critical care to patients with chronic kidney disease. However, there has been little innovation in treatment options for kidney disease patients since the 1960s. This lack of progress has led to challenges in finding nephrologists who are knowledgeable about rare kidney conditions and can provide accurate diagnoses and expert treatment. As a result, many patients experience delays in diagnosis, leading to a rapid decline in kidney function and, ultimately, kidney failure.

Congressman Gus Bilirakis highlights the importance of the legislation in removing diagnostic and treatment barriers for patients with rare kidney diseases. He states, "Our life-saving legislation will help remove diagnostic and treatment barriers for many patients suffering with a rare disease. Through the establishment of Rare Kidney Disease Research Centers of Excellence and increased provider education efforts, 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."

Representative Terri Sewell also emphasizes the need for increased awareness and education for rare kidney disease patients. She states, "Far too many people living with rare kidney disease have trouble finding specialized care providers. 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."

The bill has received support from NephCure, a nonprofit organization focused on finding better treatments and a cure for rare kidney diseases. NephCure CEO Joshua Tarnoff commends Congressman Bilirakis and Congresswoman Sewell for their efforts in championing the New Era for Preventing End-Stage Kidney Disease Act. Tarnoff expresses his belief that the bill can significantly impact the care of rare kidney disease patients through earlier detection and access to the right treatments. He also highlights the importance of rare kidney disease education opportunities for both doctors and patients, as well as the allocation of funds for research.

The rare kidney disease community has played an essential role in the development and introduction of the New Era for Preventing End-Stage Kidney Disease Act. NephCure and other organizations are committed to working alongside Congressman Bilirakis and Congresswoman Sewell to pass this crucial legislation in the 118th Congress.

In conclusion, the New Era for Preventing End-Stage Kidney Disease Act aims to address the treatment and diagnostic barriers faced by patients with rare kidney diseases. The bill proposes the establishment of Rare Kidney Disease Research Centers of Excellence and increased provider education efforts to improve the identification and treatment of rare kidney diseases. With the support of NephCure and the rare kidney disease community, Representatives Bilirakis and Sewell hope to pass this legislation and provide better care for patients with rare kidney diseases.

To find out more, go to this link: https://bilirakis.house.gov/media/press-releases/bilirakis-and-sewell-introduce-bill-help-rare-kidney-disease-patients