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
Barry Moore lone delegation vote against NDAA continues to highlight spending bills flaws
Last week, the House of Representatives passed a bipartisan conference report to the National Defense Authorization Act (NDAA) for Fiscal Year 2024. The final report, which sets policy for the U.S. military, left out several partisan Republican agenda items that were added by Republicans to the NDAA on the House floor in the House version of the bill in July, igniting a months-long partisan impasse with the White House, and the Democratic-controlled U.S. Senate. Thursday’s compromise version of the NDAA sets Defense policy for the year that began on October 1. Congressman Barry Moore said those conservative priorities were needed to refocus our Department of Defense solely on its mission to safeguard our national security; thus voting against the bipartisan NDAA that passed the House. Moore has subsequently tweeted for specifics about his opposition since it passed. “This version of the NDAA forces American taxpayers to fund abortion travel, sex reassignment surgeries, a one-year reauthorization of FISA with no reforms, which allows weaponized government to spy on Americans, and critical race theory initiatives teaching that our nation’s enemies are not abroad, but within our own citizens and military,” said Moore. “Earlier this year, I proudly supported the House version of this legislation, which was truly focused on military readiness and service member needs. I am disappointed that divisive policies which hold service members and taxpayers hostage to the Democrats’ radical agenda have been included in this bill, and I cannot support it.” According to Moore the FY24 conference report to the NDAA includes the following: Funding for abortion travel for service members Funding for sex re-assignment surgeries for service members Funding to teach service members CRT and DEI initiatives An automatic one-year reauthorization of FISA with no reforms, allowing for continued weaponized government through April 2025 Only watered down efforts to deter the growing influence and military capabilities of China Provides at least $600 million in funding to Ukraine Climate change initiative funding to appease Biden’s wealthy radical environmentalist base Democrats have functional control of the Senate, the largest minority in the history of the House of Representatives, and total control of the executive branch so some compromise was necessary to effectively govern. The NDAA allows the Biden Administration to continue using taxpayer funds on abortion travel, transgender surgeries, and drag shows. How does that prepare our service members to combat adversaries like China and Russia? — Rep. Barry Moore (@RepBarryMoore) December 15, 2023 Congressman Robert Aderholt (R-AL04) voted for the compromise version of the legislation, acknowledging that he would have preferred a more partisan GOP bill. “Despite our many policy wins, the reality of a divided government means that Republicans did not get everything we wanted,” Aderholt stated. ”I am deeply disappointed that Senate Democrats were able to strip out of a House-passed provision that would overturn President Biden’s unconstitutional policy of reimbursing servicemembers’ abortion travel costs. However, we were able to take an axe to the leftist, woke agenda that Democrats have been forcing on our military. We have put a hiring freeze for social justice warriors in the DoD, prohibited the use of federal funds to promote critical race theory, and undone the injustice done to our servicemembers who were wrongfully punished for refusing the COVID-19 vaccine.” I am disappointed that divisive policies which hold service members and taxpayers hostage to the Democrats’ radical agenda have been included in the National Defense Authorization Act, and I cannot support it. See my full statement below: pic.twitter.com/RIV36ee1AE — Rep. Barry Moore (@RepBarryMoore) December 14, 2023 This year’s NDAA reauthorizes FISA 702 spying authority with no reforms. This means that our intelligence community can continue to conduct warrantless surveillance campaigns on Americans without penalty, including Biden’s political opponents like President Trump. — Rep. Barry Moore (@RepBarryMoore) December 16, 2023 The bipartisan version of the NDAA passed the House in a 310 to 118 vote. 45 Democrats and 73 Republicans voted against the final version of the NDAA. The NDAA overcame opposition from both hard-line conservative Freedom Caucus members as well as progressives who thought that Democratic leadership compromised too much. The NDAA authorizes $886 million for defense in FY2024 including a substantial increase in the amount of money that the U.S. spends on nuclear weapons as well as a 5.2% across the board pay increase for troops. This version of the NDAA has already passed the U.S. Senate, with Senators Katie Britt and Tommy Tuberville voting in favor of the measure. “I voted for this year’s defense bill for two reasons: because it’s good for Alabama and it’s good for our national security,” said Sen. Tuberville. “This bill could have been a lot stronger, but Chuck Schumer rigged the negotiation process to prevent conservatives from getting key wins on issues like taxpayer-funded abortion and DEI. We didn’t get everything we wanted this time, but we got a lot. And my fellow conservatives in Alabama and across America can be sure that I’m determined to get the rest of it in next year’s bill.” Moore is running for a third term against incumbent Congressman Jerry Carl who voted for the NDAA. The two GOP incumbents were placed in the same congressional district by a federal court to settle a Voting Rights Act complaint against the state and will face Republican primary voters on March 5, 2024. To connect with the author of this story or to comment, email brandonmreporter@gmail.com
