Kidney Patients Engage Congress During Summer Recess

Applaud Organ Donor Job Protections, Point to Unresolved CMS, FDA Red Tape

WASHINGTON, Sept. 4, 2026 /PRNewswire/ -- The American Association of Kidney Patients (AAKP), the nation's largest independent, non-partisan kidney patient advocacy organization, conducted its second annual All Kidney Policy is Local™ national campaign during the Congressional summer recess. The campaign empowers kidney patients, care partners, living donors, and their families — from Maine to Washington state — to meet directly with Congressional leaders at their local federal offices and online, putting a face and personal story behind the policies that affect their communities. Since 2025, the All Kidney Policy is Local™ campaign has resulted in over 300 targeted patient meetings with members of the U.S. House of Representatives and the U.S. Senate.

Since 2017, AAKP has conducted the only non-partisan voter registration campaign serving kidney community patients, organ donors, medical professionals, researchers, and industries spearheading new kidney diagnostics, drugs, and devices. In 2024, AAKP engaged over 500,000 KidneyVoters™, resulting in a new "micro-constituency" within the American electorate according to election experts. KidneyVoters™ impact close elections, hold Congress accountable for decisions impacting patient care choice and encourage oversight of federal agencies responsible for red tape that stymies patient health, continued employment, and survival.

"Kidney patients and organ donors are not passive participants in healthcare nor in the decisions that affect their ability to work and provide for their families," said AAKP President Edward V. Hickey, III, a chronic kidney disease patient. "They are informed, engaged citizens and a powerful voting constituency. Through the All Kidney Policy is Local campaign, AAKP patient advocates bring their firsthand insights directly to elected leaders, ensuring that Congressional decisions made in Washington, D.C., often in the name of kidney patients, actually address their real needs and serious concerns. Every federal kidney policy decision, from dialysis access to transplant funding, ultimately plays out in local communities, affecting patients and families right where they live. When Washington changes kidney care policy, it is local hospitals, local jobs, and the health of entire communities that feel the impact first." Hickey is a U.S. Marine Corps Veteran, a former senior Congressional aide, and has served in appointed roles in two presidential administrations. He currently serves on the American Board of Internal Medicine's (ABIM) Nephrology Specialty Board and as the Chair of the AAKP Veterans Health Initiative.

Through these meetings — which are not just about legislation, but about putting a face and a personal story behind important issues — the 2026 All Kidney Policy is Local™ campaign raised major patient concerns, including:

1. Immediate passage of the Living Donor Protection Act (LDPA), S. 1552/H.R. 4582 and H.R. 4583. The bill protects living organ donors from insurance and job discrimination based solely on their decision to donate a kidney to save another life, barriers cited most often by potential organ donors. The bipartisan legislation is co-sponsored by Senator Tom Cotton (R-AK) and Senator Kirsten Gillibrand (D-NY). The bill was voted out of the Senate HELP Committee on February 26, 2026, with strong support from Senator Susan Collins (R-ME) and Senator Patty Murray (D-WA). As passed by the HELP Committee, the bill's consensus language is strongly endorsed by both the kidney patient community and the American Council of Life Insurance (ACLI). In 2018, AAKP and transplant professionals worked with the U.S. Department of Labor (DOL) to have DOL issue FMLA protections to living organ donors, based on the original intent of the FMLA's Congressional co-sponsors (click here to read the letter and click here to watch the video). Passage of the LDPA will codify the DOL's 2018 FMLA job protections at a time when falling living organ donation rates have escalated Congressional concerns.
2. Support for reforms to the U.S. Preventive Services Task Force (USPSTF). AAKP is leading kidney community support to overhaul the USPSTF. For almost 20 years, the USPSTF has lacked kidney expertise and has been unresponsive to kidney stakeholder requests for a disease screening recommendation to protect vulnerable Americans. The USPSTF's failure has negatively impacted innocent people, jeopardized livelihoods, increased demands for dialysis and organ transplants, and imposed massive costs on taxpayers. If detected early enough, new drug innovations stop kidney disease progression and help patients avoid burdensome treatments and premature death. In 2025, AAKP asked Health and Human Services (HHS) Secretary Robert F. Kennedy, Jr. to dismiss USPSTF leaders for their incompetence related to kidney disease prevention. Click here to read a related Politico article. Click here to read AAKP's letter to HHS Secretary Robert F. Kennedy, Jr. Click here to read AAKP President Edward V. Hickey's op-ed featured in the Washington Examiner.
3. Support for a new, patient-centered and taxpayer-friendly Medicare payment and reimbursement system for kidney care. The Center for Medicare and Medicaid Services (CMS) currently pays for kidney care through an antiquated "bundled" payment system designed largely around the legacy care practices of large, corporate dialysis providers. The European-style cost-containment program failed to anticipate rapid advances in kidney science and reimbursements for new treatments that transcend the high-mortality status quo care. The resulting red tape blocks timely patient access to FDA-approved breakthrough innovations that reduce catheter-related bloodstream infections (CRBSIs), improve hemodialysis access, and make it easier for patients and clinicians to manage anemia, high phosphorus, and other conditions. AAKP believes the CMS-administered "bundled" payment system is obsolete, subjectively managed without transparency, and fundamentally ill-suited for advancements in cardio-kidney-metabolic drugs, xenotransplants and artificial kidneys.
4. Support to hold the U.S. Food and Drug Administration (FDA) publicly accountable for delayed decision-making on the next generation of safer, kidney transplant drugs. Status quo immunosuppressive drugs were approved 20 years ago by the FDA based on a clinical endpoint of 1-year transplant organ graft survival. Today, over 93% of kidney transplants survive the first year. Current drugs have serious side effects, including cancer, and are also nephrotoxic to transplanted kidneys. A newly proposed clinical endpoint – developed over the course of the past 7 years by transplant experts, industry, and patients, in full coordination with the FDA – has been awaiting FDA approval for months. If approved, the new endpoint will help drug companies develop new, safer transplant drugs that allow American transplant patients to keep their transplants for their entire life and with less dangerous side effects. If the FDA does not approve the proposed endpoint, it could take another 10 years before new transplant drugs are developed. Nearly 20% of kidney patients on the organ waitlist are awaiting their second or third transplant. Transplant patients, organ donors, and transplant experts widely support the newly proposed endpoint. AAKP believes approval is critical to national goals for increasing long-term organ transplant survival and maintaining American preeminence in biotech.

AAKP advocates also discussed kidney community efforts, coordinated by the American Society of Nephrology (ASN) (view report) to expand Congressional appropriations and taxpayer investments in kidney science and research by up to $1.8 billion, through the National Institutes of Health as well as 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, stated, "The All Kidney Policy is Local campaign is embraced by Congressional leaders and staff who deeply respect and value the lived experiences and unique insights of constituents living with kidney disease. These are important opportunities to personalize policy concerns and share patient viewpoints on how long-term federal research investments accelerate life-saving innovations. AAKP is fully committed to making certain the United States maintains leadership in the discovery of safe, next-generation kidney technologies while counteracting the pacing threat of communist China and its state-orchestrated efforts to dominate biotech, manipulate the drug supply chain, and limit patient choice." Conway has served in appointed roles in four presidential administrations, including as a Chief of Staff of the U.S. Department of Labor and as an agency Chief of Staff at the U.S. Department of Homeland Security. He has also served as the inaugural Chair of the FDA Patient Engagement Advisory Committee (PEAC).

AAKP provides advocacy skills and social media training for patients and organ donors through its Center for Patient Engagement and Advocacy and National Patient Meeting with a faculty of allied government affairs and political experts. The organization's grassroots network of community-based influencers supports kidney research, disease screening, and medical innovation. They also focus public attention on Government Determinants of Health (GDoH) that harm patients, including antiquated federal regulations and payment policies. AAKP advocates engage regularly with Congressional leaders on 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.

Follow AAKP on social media at @kidneypatient on Facebook, @kidneypatients on X, and @kidneypatients on Instagram, and visit http://www.aakp.org for more information. Over the past decade, AAKP patient advocates have advanced bipartisan kidney policy including: passage of the bipartisan law modernizing the Organ Procurement and Transplantation Network (OPTN) (2023); lifetime transplant drug coverage for kidney transplant recipients (2020); the historic Executive Order on Advancing American Kidney Health signed by President Donald Trump (2019); job protections for living organ donors under the Family Medical Leave Act (FMLA) via the U.S. Department of Labor (2018); and Congressional approval of HIV positive organ transplants for HIV positive patients (2013).

MEDIA CONTACT:
Brendan LaCivita
National and Medical Media Specialist
[email protected]
(813) 906-7740

SOURCE American Association of Kidney Patients