Salutes Patients Driving Bipartisan Living Donor Protection Act
Senators Kirsten Gillibrand and Tom Cotton Lead Senate Effort
WASHINGTON, D.C. – The American Association of Kidney Patients (AAKP), the nation’s oldest and largest independent kidney patient organization, hosted its 6th Annual Public Policy Summit entitled “Issues and Implications: What Kidney Patients Need to Know” on July 28, 2023. Congressman Jerrold Nadler (D-NY), co-sponsor of the bipartisan Living Donor Protection Act (H.R 2923 / S.1384), headlined the event as an honored special guest. Congressman Nadler discussed the origin and intent of the legislation with AAKP President Edward V. Hickey, III, USMC (WATCH DISCUSSION HERE). AAKP is a leading advocate for greater patient consumer care choice, patient-centered care and treatments – such as kidney transplantation – that best empower patients to fulfill their aspirations, including ongoing full-time or part-time work in their chosen trade or profession.
The bipartisan legislation is aimed at preventing job and insurance discrimination against living donors solely because of their courageous decision to donate an organ to save a life. For over two decades, insurance discrimination against living organ donors has been consistently cited as a major barrier to the nation’s efforts to increase living organ donation. The legislation was introduced in the Congress on April 27th by Congressman Nadler, Congressman Troy Balderson (R-OH), Congresswoman Lisa Blunt Rochester (D-DE), Congressman Jim Costa (D-CA), Congressman John Curtis (R-UT), Congresswoman Diana DeGette (D-CO), Congresswoman Mariannette Miller-Meeks (R-IA), Congressman Gregory F. Murphy, M.D. (R-NC), along with Senator Kirsten Gillibrand (D-NY) and Senator Tom Cotton (R-AR).
Kidney disease and kidney failure are both healthcare and workforce issues. Over 37 million people suffer from kidney disease, over 700,00 live with kidney failure, nearly 100,000 are on the waiting list for a kidney transplant. For people with kidney failure, transplantation is considered the preferred therapy over dialysis, which is a vastly more burdensome and costly treatment in terms of life and resources, for both patients and taxpayers. Dialysis, especially status quo in-center hemodialysis care, is characterized by high mortality and extremely high rates of disability, dependency, and unemployment. The United States spends over $130 billion a year on kidney disease, not counting the costs of disability and unemployment caused by outdated dialysis treatments. The Medicare End Stage Renal Disease Program (ESRD) was originally established in 1973 as a bridge to transplantation.
AAKP launched an unprecedented national grassroots and social media campaign to inform, mobilize, and activate all sectors of the kidney and healthcare community, as well as major national employers, in support of the Living Donor Protection Act. The campaign has already resulted in thousands of engagements with elected leaders of Congress, through letters, calls, texts, and social media posts. Online efforts included a “Voices of Transplantation” video series featuring kidney patients, living donors, and care partners sharing how a living organ donation changed their life. Click here to watch the video series and then visit the AAKP Action Center to send a letter to your Congressional representatives asking them to support this legislation.
Commenting on the groundswell of living donor and kidney patients who are working to support the passage of the legislation, Congressman Nadler stated, “I’m grateful to the dedicated advocates with AAKP for their work to support donors. Together, we will pass the Living Donor Protection Act – a bipartisan bill that will save lives by lowering barriers to living organ donation. The bill would prevent insurance companies from discriminating against living organ donors, allow organ donors to access FMLA time to recover from surgeries, and direct HHS to update their materials on live organ donation. Your advocacy is so important in this work. I am proud to lead the Living Donor Protection Act, and I am thankful for your support.”
AAKP President Ed Hickey stated, “We are grateful to Congressman Nadler for his unwavering focus on a bipartisan solution to fix a substantial barrier to the nation’s efforts to increase living organ donation. No person should be discriminated against in their job or insurance coverage solely for stepping up to save another life, and no patient on the organ waiting list should have their life expectancy further jeopardized by such short-sightedness. AAKP has deep respect and admiration for the courage demonstrated by Congressional leaders from both sides of the aisle with their support of the Living Donor Protection Act. Our hope is that a majority of the Congress will follow their lead and pass this law in 2023 to save more lives and the livelihoods of people in tremendous need.” Hickey is a kidney patient and attorney with experience as a senior staff member on Capitol Hill and appointed service under two presidents. He is also Chair of AAKP’s Veteran’s Health Initiative and is involved with veteran service organizations aiding homeless veterans and advancing protections for their earned legal rights and benefits.
The legislation is also supported by a rapidly growing number of Congressional leaders as well as a highly diverse and expanding alliance of national stakeholders including AAKP, the American Council of Life Insurance (ACLI), the National Council of Insurance Legislators (NCOIL), the American Society of Transplant Surgeons (ASTS), the American Society of Transplantation (AST), the American Society of Nephrology (ASN), the National Kidney Foundation (NKF), The Organization for Donation and Transplant Professionals – NATCO, the United Network for Organ Sharing (UNOS), the Renal Physicians Association (RPA), the Polycystic Kidney Disease Foundation (PKDF), and many other organizations working in alliance with kidney patients and organ donors.
In 2019, AAKP launched the first and largest national voter registration effort, entitled KidneyVoter™, to engage the over 37 million people impacted by kidney diseases and their families in the policy process. AAKP believes patients and their families must hold their elected leaders accountable for their efforts to address policy issues related to transplantation and other treatment innovations as well as the unaddressed consequences of status quo care, including disability and unemployment. AAKP will engage over 500,00 KidneyVoters™ in 2024.
This year’s Policy Summit was held virtually and brought together a network of policy leaders, healthcare experts, and patient advocates to discuss current and emerging issues that impact kidney patient consumers and how kidney advocates, and our collective voices, play an instrumental role in shaping policies that impact care choice and care access. Key elements of AAKP’s National Kidney Patient Consumer Policy Agenda, as outlined during the organization’s 2022 Policy Summit, were highlights of the day.
The appearance by Congressman Nadler was followed by a panel discussion among AAKP’s President Hickey and Ms. Anita Sites, MSN, RN, AG-ACNP-BC, CCTC, Member of the Board of Directors and Councilor-at-Large for NATCO – The Organization for Donation and Transplant Professionals who also serves as an Advanced Practice Provider-Transplant Surgery and Lead Living Donor Transplant Coordinator at University of Virginia Transplant Department and Ms. Suzanne Ruff, a living kidney donor who serves as AAKP Treasure, Ambassador, and the renowned author of award-winning book The Reluctant Donor. (WATCH PANEL HERE)
AAKP’s 2023 Policy Summit sponsors were: Gold Level, Bayer Pharmaceuticals and Sanofi; Silver Level, Akebia Therapeutics and AstraZeneca; and Bronze Level, Veloxis Therapeutics. All 2023 Policy Summit presentations will be available OnDemand through the AAKP website and AAKP YouTube Channel and will continue to reach additional viewers across the U.S. to increase the AAKP reach exponentially of this year’s Policy Summit content.
About the American Association of Kidney Patients (AAKP)
Since 1969, AAKP has been a patient-led organization driving policy discussions on kidney patient care choice and medical innovation. In 2018, AAKP established the first and largest U.S. kidney voter registration program, KidneyVoters™. Over the past decade, AAKP patient advocates have helped advance lifetime transplant drug coverage for kidney transplant recipients (2020); the presidential Executive Order on Advancing American Kidney Health (2019) and Congressional legislation allowing HIV-positive organ transplants for HIV-positive patients (2013). Follow AAKP on social media at @kidneypatient on Facebook, @kidneypatients on Twitter, and @kidneypatients on Instagram, and visit www.aakp.org for more information.