AAKP organizes "All Kidney Policy is Local" campaign on Capitol Hill

The American Association of Kidney Patients (AAKP) organized its second annual "All Kidney Policy is Local™" campaign during the Congressional summer recess, bringing the voices of kidney patients, care partners, living donors, and their families directly to Capitol Hill. This initiative, which has been ongoing since 2025, has facilitated over 300 patient meetings with members of the U.S. House of Representatives and Senate.

Since 2017, AAKP has spearheaded the only non-partisan voter registration campaign for the kidney community, engaging more than 500,000 "KidneyVoters™" in 2024. According to election experts, this effort has created a new "micro-constituency" within the American electorate, significantly impacting close elections and holding Congress accountable for decisions that affect patient care.

AAKP President Edward V. Hickey, III, a chronic kidney disease patient and U.S. Marine Corps Veteran, emphasized that kidney patients and organ donors are not passive participants in healthcare decisions. "They are informed, engaged citizens and a powerful voting constituency," he stated. "Through the All Kidney Policy is Local campaign, AAKP patient advocates ensure that Congressional decisions in Washington, D.C., actually address the real needs and concerns of local communities."

The 2026 campaign focused on several key issues, including the immediate passage of the Living Donor Protection Act (LDPA), S. 1552/H.R. 4582 and H.R. 4583. This bipartisan legislation aims to protect living organ donors from insurance and job discrimination, a concern that has been cited by potential donors. The bill, which was voted out of the Senate HELP Committee on February 26, 2026, enjoys strong support from both the kidney patient community and the American Council of Life Insurance (ACLI).

AAKP also called for reforms to the U.S. Preventive Services Task Force (USPSTF), citing the organization's lack of kidney expertise and failure to address kidney disease screening recommendations. AAKP has been advocating for changes to the USPSTF for nearly two decades, arguing that early detection of kidney disease could prevent the progression of the disease and reduce the need for dialysis and organ transplants.

The organization also highlighted the need for a new, patient-centered Medicare payment and reimbursement system for kidney care. AAKP contends that the current "bundled" payment system managed by the Centers for Medicare and Medicaid Services (CMS) is outdated and ill-suited for advancements in kidney science and treatment.

Additionally, AAKP pressed for FDA accountability in the approval process for next-generation kidney transplant drugs. The FDA's delayed decision-making on these drugs could jeopardize the long-term survival of transplant patients and hinder the development of safer alternatives.

AAKP advocates also discussed efforts to expand Congressional appropriations for kidney science and research by up to $1.8 billion, through the National Institutes of Health and the U.S. Department of Defense. AAKP Vice President and Chair of Policy Paul T. Conway, a 49-year kidney patient and 29-year transplant recipient, noted, "These are important opportunities to personalize policy concerns and share patient viewpoints on how long-term federal research investments can accelerate life-saving innovations."

AAKP continues to engage with Congressional leaders across various committees, including the U.S. House Ways and Means, Government Oversight, Budget, Armed Services, and Rules Committees, as well as the U.S. Senate Health, Education, Labor and Pension (HELP), Finance, Budget, Armed Services, Rules and Administration, and Veterans Affairs Committees.

The organization's social media presence includes accounts on Facebook, X, and Instagram, where it shares updates and engages with the kidney community. Over the past decade, AAKP patient advocates have been instrumental in advancing several bipartisan kidney policies, including the modernization of the Organ Procurement and Transplantation Network (OPTN) in 2023, lifetime transplant drug coverage for kidney transplant recipients in 2020, and the historic Executive Order on Advancing American Kidney Health signed by President Donald Trump in 2019.