Advocates United for Kidney Health on Capitol Hill at NKF’s 11th Annual Kidney Patient Summit
Voices for Kidney Health Advocates Joined Forces to Enhance Kidney Wellness for Millions
(Washington, D.C., February 28, 2024) — The National Kidney Foundation’s (NKF) 11th Annual Kidney Patient Summit (The Summit) took place in Washington, DC, on Tuesday, Feb. 27, 2024. This pivotal event brought together many NKF Voices for Kidney Health advocates along with kidney organizations from across the country to amplify their voices and advocate for legislative actions aimed at enhancing kidney health on behalf of the 37 million Americans who are estimated to have kidney disease, also known as chronic kidney disease (CKD).
Organized and led by the NKF, the Summit served as a platform for over 150 Voices’ advocates to engage directly with policymakers and share their personal stories while also educating Members of Congress and their staff on crucial issues pertaining to kidney health. By raising awareness and building support for kidney-friendly policies, Voices’ advocates played a vital role in shaping the future of kidney care in the United States.
Our Voices’ advocates were joined by advocates from Home Dialyzors United, Nephcure Kidney International, IGA Nephropathy Foundation of America, and PKD Foundation to advance public policies that will promote better kidney health for all Americans. The Summit highlights the urgent need for legislative action to address the challenges facing kidney patients and their families. By uniting voices from across the kidney community, the Summit aims to drive meaningful change and improve outcomes for millions of individuals affected by kidney disease.
"We were thrilled to give NKF’s Voices’ advocates an opportunity to fight for the policies that will positively impact their lives and the lives of the millions of Americans estimated to have CKD," said Kevin Longino, Chief Executive Officer of the NKF and a kidney transplant recipient. "The Summit underscored the importance of legislators hearing directly from advocates willing to share their lived experiences with CKD as well as to promote access to life-saving treatments and modernization efforts that will make the transplantation system better."
The NKF was also proud to announce Anne Safran Dalin from Hillsborough, New Jersey as this year’s distinguished recipient of the Richard K. Salick Advocacy Award, which was presented at The Congressional Awards Reception held on Monday evening, Feb. 26. The NKF gives this award annually to a member of the Kidney Advocacy Committee (KAC) who has demonstrated exemplary advocacy work. It is a tribute to Richard Salick, a former pro surfer, three-time kidney transplant recipient, and dedicated advocate who, for over two decades, served as the Director of Community Relations for the NKF of Florida. His advocacy efforts, characterized by humor and compassion, left an indelible mark on the kidney health community.
Award winner Anne Safran Dalin’s courageous advocacy work as a devoted member of the NKF’s KAC since 2018 and a staunch supporter of numerous health-related nonprofits, illustrates why she was selected for this prestigious award. Her son shares her giving spirit and became a living donor by giving his kidney to Anne who now leads a healthy and vibrant life. From moderating Facebook Live events to hosting annual walks in her community in support of the Breast Cancer Resource Center of Princeton as well as serving as an ambassador for NKF’s Peer Support group where she mentors those who will soon get a transplant, Anne is always eager to collaborate and support those in need. Her recommended main source for CKD patients seeking up-to-date information is the National Kidney Foundation website.
Voices’ advocates from 36 states were on Capitol Hill urging over 160 Members of Congress and policymakers to advance the following pro-kidney health policies:
Organ Procurement and Transplantation Network (OPTN) Modernizations Appropriations
The U.S. organ donation and transplantation system is plagued by inefficiencies and underperformance
that causes donor organs to go unprocured and untransplanted. Poor governance practices interfere with the system’s accountability and performance improvements. As a result, 17 people die every day waiting for a life- saving organ transplant. The OPTN Modernization Initiative is a comprehensive effort to address these challenges by fostering greater transparency, increasing accountability, and improving overall system performance. It is crucial that the Health Resources and Services Administration (HRSA) have the resources necessary to deliver on this goal. We are asking Congress to provide no less than $100 million for the transplant modernization initiative to ensure our organ donation and transplantation system serves the needs of the more than 100,000 individuals on the transplant waitlist.
The Living Donor Protection Act (LDPA)
The Living Donor Protection Act (H.R. 2923/S. 1384)
Living donors have saved the lives of approximately 7,000 kidney patients each year! The Living Donor
Protection Act (LDPA) ensures those heroes are protected against discrimination in the pricing and availability of life, disability, and long-term care insurance. It also creates a federal guarantee that living donors are covered under Family Medical Leave Act protections.
The Improving Access to Home Dialysis Act
We ask all members of Congress to cosponsor this important legislation. Eighty-five percent of dialysis patients receive in-center dialysis, even though up to 40 percent have expressed interest in dialyzing at home. The Improving Access to Home Dialysis Act removes barriers to home dialysis and ensures that all patients – regardless of zip code - can succeed on the dialysis modality that most suits their needs and preferences.
Sign onto the Kidney Caucus Letter to Support Chronic Kidney Disease Screening to the Kidney
More than 37 million adults in America have CKD, but 90 percent of them don’t know it, including almost 40 percent of those with end-stage disease. Unfortunately, most adults – even those at high risk – aren’t screened for kidney disease. The Kidney Caucus is circulating a sign-on letter urging the U.S. Preventive Services Task Force to carefully weigh the scientific evidence and the burden of kidney disease to ensure that people with CKD are not overlooked.
The Summit and its participants were supported in their advocacy efforts by the following 2024 Corporate Sponsors: Bayer, Boehringer Ingelheim, Lilly, Norvartis, GSK, Pfizer, Ardelyx, Novo Nordisk, Aurinia, Baxter, Sanofi, Eledon Pharmaceuticals, and Alexion.
Learn more information about the Kidney Patient Summit at voices.kidney.org
About Kidney Disease
In the United States, more than 37 million adults are estimated to have kidney disease, also known as chronic kidney disease (CKD)—and approximately 90 percent don’t know they have it. About 1 in 3 adults in the U.S. are at risk for kidney disease. Risk factors for kidney disease include: diabetes, high blood pressure, heart disease, obesity, and family history. People of Black or African American, Hispanic or Latino, American Indian or Alaska Native, Asian American, or Native Hawaiian or Other Pacific Islander descent are at increased risk for developing the disease. Black or African American people are about four times as likely as White people to have kidney failure. Hispanics experience kidney failure at about double the rate of White people.
About the National Kidney Foundation
The National Kidney Foundation (NKF) is the largest, most comprehensive, and longstanding patient-centric organization dedicated to the awareness, prevention, and treatment of kidney disease in the U.S. For more information about NKF, visit www.kidney.org.
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