Kidney Advocates Urge Congress to Protect Donors, Improve Care

ROCKVILLE, Md. – May 06, 2026 – Thirty-five advocates from across the nation, each with a personal connection to kidney disease, converged on Capitol Hill today for the American Kidney Fund's (AKF) annual Kidney Action Summit. This delegation, comprising patients, caregivers, and living organ donors from over 20 states, is meeting with legislators to champion two critical pieces of legislation aimed at transforming the landscape of kidney health in America.

The advocates are focusing their efforts on the Living Donor Protection Act of 2025 and the Kidney Care Access Protection Act, bills designed to remove significant barriers for living donors and enhance care for millions of dialysis patients.

“The kidney community needs lawmakers to hear their voices and consider the impact of legislative and policy decisions on the people living with this chronic illness,” said LaVarne A. Burton, AKF President and CEO. “We are honored to facilitate these meetings, to put a face to the statistics, and to ensure that elected officials are hearing from their constituents about issues that matter to them.”

Safeguarding the Gift of Life

A central focus of the summit is the urgent need to pass the Living Donor Protection Act (LDPA) of 2025 (S. 1552/H.R. 4582 and H.R. 4583). For years, individuals who altruistically donate a kidney have faced the risk of significant financial and professional repercussions. Research indicates that as many as one in four living donors have reported difficulties with insurance after their donation, with some studies showing up to 11% struggle to obtain or afford coverage. This discrimination can manifest as denied policies, increased premiums, or canceled coverage for life, disability, or long-term care insurance.

The LDPA directly addresses these issues by making it illegal for insurers to discriminate against someone solely because they have been a living organ donor. Furthermore, the bill aims to provide crucial job security by codifying a 2018 Department of Labor opinion that organ donation recovery is protected under the Family and Medical Leave Act (FMLA). This provision would guarantee that donors can take the necessary time off work to donate an organ and recover from surgery without the fear of losing their job—a significant barrier that currently deters many potential donors.

For first-time summit attendee Ashli Littleton, a kidney patient from Clarksville, Tennessee, the fight is deeply personal. “I’m attending so that I can be seen and heard,” she stated. “We have to be at the table, so that those laws are getting made with an actual person in mind and not just this imaginary patient. A real patient.”

A Broad, Bipartisan Push for Donor Security

The push for the LDPA is notable not only for its goals but also for the remarkably broad, bipartisan coalition that supports it. The legislation has been championed in the Senate by Senators Kirsten Gillibrand (D-NY) and Tom Cotton (R-AR), and in the House by Representatives Jerrold Nadler (D-NY) and Don Bacon (R-NE), among many other co-sponsors from both sides of the aisle.

This legislative effort represents the culmination of nearly a decade of advocacy. Its recent progress, including a favorable vote in the Senate Health, Education, Labor, and Pensions (HELP) Committee in February 2026, marks the furthest the bill has ever advanced, fueling optimism for its eventual passage. While 35 states have enacted some form of protection for living donors, these laws vary widely and cannot provide the comprehensive, nationwide safeguards offered by federal legislation, particularly regarding FMLA protections.

Support for the bill extends far beyond Congress, uniting a vast array of organizations including the National Kidney Foundation, the American Society of Nephrology, the American Society of Transplant Surgeons, and, significantly, the American Council of Life Insurers (ACLI). The insurance industry's support, gained in the last Congress, has been instrumental in removing potential opposition and building consensus around the need to protect those who give the gift of life.

Modernizing Care for Millions on Dialysis

Beyond protecting donors, the AKF ambassadors are also advocating for the Kidney Care Access Protection Act (S. 2730/H.R. 6214). This legislation addresses the other side of the kidney disease crisis: the quality and accessibility of care for the hundreds of thousands of Americans who rely on dialysis.

The bill proposes to establish a long-term, sustainable Medicare payment pathway specifically for innovative drugs, devices, and technologies used in dialysis care. The goal is to incentivize the development and adoption of new treatments that can improve patient outcomes and quality of life. The legislation would also implement a process to more accurately account for rising operational costs, such as labor, to help ensure that dialysis centers can remain viable and provide consistent, high-quality services to patients in their communities.

This forward-looking policy is what drew Cameron Lillie-Liberto, an advocate from Oxnard, California, to the summit for the first time. “I want to be able to be in rooms where real conversations are happening about policy, access, education and the future of kidney care. I believe lived experience belongs at those tables,” Lillie-Liberto said. “At the same time, I’m also eager to learn, to better understand how change is made at a legislative level so I can advocate more effectively, not just for myself, but for the entire kidney community.”

His sentiment captures the essence of the Kidney Action Summit: a powerful fusion of personal experience and policy advocacy. By sharing their stories directly with lawmakers, these 35 ambassadors are not just representing statistics; they are embodying the human reality of a disease that affects one in seven Americans and demonstrating the profound impact that dedicated, grassroots advocacy can have on national health policy.