American Kidney Fund's Kidney Action Summit Brings AKF Ambassadors to Capitol Hill to Urge Congress to Protect Living Donors and Boost Funding for Kidney Disease Research

ROCKVILLE, Md. (May 16, 2023) - More than two dozen American Kidney Fund (AKF) Ambassadors – kidney patients, caregivers and living donors from across the country – will meet with lawmakers on Capitol Hill in Washington, DC on May 17 and urge them to support legislation and policies that will improve the lives of people with kidney disease. The annual AKF Kidney Action Summit will take place in person for the first time since 2019 and kicks off today with a full day of training and networking.

During the Congressional meetings, AKF Ambassadors will encourage lawmakers in the Senate and House of Representatives to support the Living Donor Protection Act of 2023 (S. 1384/H.R. 2923), which would ensure critical job protections for living organ donors and prohibit insurance companies from declining or limiting specific insurance coverage due to their status as a living organ donor.

The bipartisan legislation, which currently has 68 co-sponsors in the House of Representatives, was introduced April 27 by Rep. Jerrold Nadler (D-NY), Rep. Gregory F. Murphy (R-NC), Rep. Troy Balderson (R-OH), Rep. Lisa Blunt Rochester (D-DE), Rep. Jim Costa (D-CA), Rep. John Curtis (R-UT), Rep. Diana DeGette (D-CO) and Rep. Mariannette Miller-Meeks (R-IA). The Senate companion bill has 11 cosponsors and was introduced by Sen. Kirsten Gillibrand (D-NY) and Sen. Tom Cotton (R-AR). 

Ambassadors will also speak to their representatives and senators about the need for more federal funding for research on kidney disease, which is the ninth leading cause of death in the United States.  

"Kidney disease does not get the attention that it deserves on Capitol Hill, despite the fact that 37 million Americans are living with it," said LaVarne A. Burton, AKF President and CEO. "AKF's Kidney Action Summit is a vital opportunity for legislators to hear from people who are living with this devastating disease. Our elected officials have the power to make consequential policy decisions that can help improve health outcomes for millions of people with kidney disease, and the best people to deliver that message are our dedicated Ambassadors who are joining us in Washington, DC to fight for the kidney community."

"It's important for legislators to hear from people with kidney disease firsthand because it's an everyday way of life for us. We know kidney disease from experience. There's no better way to understand kidney disease and how it impacts lives than to hear the different stories and see the survivors. I call it, 'A Walk In My Shoes,'" said Shante Byrd, an AKF Ambassador and kidney transplant recipient from Rex, Georgia. "I'm traveling to the Kidney Action Summit to advocate and be a face of hope — that kidney disease isn't a death sentence. I also want to let legislators know that we need their help."

"When it comes to having chronic kidney disease, many Americans struggle to find who to turn to when they first receive their diagnosis. Hearing from people who have CKD gives our legislators an idea of how they can better help these individuals. Not only does it give us a sense of hope, but it helps us to see that there are people who care and want to make a difference," said Lauren Denton, a college student living with CKD from Edison, New Jersey. "I am going to the Kidney Action Summit because I want to be someone who helps put these ideas into action."

AKF is grateful to its Corporate Members whose support makes the Kidney Action Summit possible: Akebia Therapeutics, Inc.; Alexion Pharmaceuticals, Inc.; Alnylam Pharmaceuticals, Inc.; Amgen; Apellis Pharmaceuticals, Inc.; Ardelyx, Inc.; Ascelia Pharma AB; AstraZeneca plc; Aurinia Pharmaceuticals Inc.; Biotechnology Innovation Organization; Boehringer Ingelheim/Lilly; Calliditas Therapeutics AB; Chinook Therapeutics, Inc.; CSL Vifor; Exelixis, Inc.; GSK; Hansa BioPharma AB; Horizon Therapeutics plc; Janssen Pharmaceuticals, Inc.; Mallinckrodt Pharmaceuticals; Merck; Novartis Pharmaceutical Corporation; Novo Nordisk A/S; Otsuka America Pharmaceutical, Inc.; Pharmaceutical Research and Manufacturers of America (PhRMA); Sanofi; Spherix Global Insights; Travere Therapeutics, Inc. and Vertex Pharmaceuticals Inc.