Today, U.S. Senators Kirsten Gillibrand (D-NY) and Tom Cotton (R-AR) introduced legislation to protect the rights of living organ donors. The Living Donor Protection Act would ensure living donors do not face discrimination from insurance companies, codify Department of Labor (DOL) guidance that covers living donors under the Family Medical Leave Act (FMLA) in the private and civil service, remove barriers to organ donation, and provide certainty to donors and recipients. Representatives Jerrold Nadler (D-NY) and Don Bacon (R-NE) lead this legislation in the House of Representatives.
Currently, there are roughly 8,000 New Yorkers on the national transplant waiting list, with approximately 7,000 waiting for a kidney.In NYS, the average wait time for a kidney transplant is about five to six years, and during that time, many patients become too sick to receive a transplant or die. Nearly 500 New Yorkers die each year waiting for an organ transplant. Receiving an organ from a living donor can shorten this wait time and ultimately allow the best chance for long-term success. Unfortunately, studies have found that up to one in four living donors report discrimination in the rates and provision of life insurance and disability insurance, and they can struggle to receive time off from work to complete their donation and recovery. Reducing barriers to living organ donation and educating potential donors on the protections provided to them under law will help to promote living organ donation and save the lives of those waiting for a transplant.
“It’s a tragedy that so many people die while waiting for life-saving organ donations. We must do more to remove the barriers that keep Americans from donating,” said Senator Gillibrand. “The Living Donor Protection Act would help ensure that the individuals who are willing to save someone’s life through an organ donation can do so without worrying that they’ll face insurance discrimination or that they could lose their job as they recover. I am proud to be introducing this bipartisan legislation and will keep fighting to finally get it passed.”
“Organ donors make an extraordinary sacrifice so someone else can have a new chance at life,” said Senator Cotton. “The Living Donor Protection Act would encourage more donors to step forward by protecting them from adverse consequences like denial of coverage and job loss.”
“When an organ donor decides to donate one of their organs to someone else, they aren’t just saving someone’s life—they’re making one of the most selfless, difficult decisions anyone could ever make. The last thing they need in the midst of that challenging process is to be confronted by needless roadblocks or insurance discrimination,” said Representative Nadler. “These roadblocks can make it economically impossible for potential donors to make that choice and, simply put, they are costing lives. April is National Donate Life Month, and I’m proud to introduce the Living Donor Protection Act to bring awareness to this issue and knock down these needless barriers to lifesaving organ donation.”
“Our state is fortunate to have Nebraska Medicine, which has a robust living donor kidney exchange program, performing more kidney chains which involves anonymous donors donating to someone without a compatible living donor, than almost any hospital nationwide. However, some living donors are discriminated against when it comes to rates and provision of life insurance and disability insurance,” said Representative Bacon. “They also don’t always receive adequate time to recover from the surgeries related to their selfless gift. This legislation will help open the doors to more living donors so we can save more lives.”
The Living Donor Protection Act would protect living organ donors and promote organ donation by:
1) Prohibiting life, disability, and long-term care insurance companies from denying or limiting coverage and from charging higher premiums for living organ donors;
2) Amending the Family and Medical Leave Act of 1993 to specifically include living organ donation as a serious health condition for private and civil service employees; and
3) Directing the U.S. Department of Health and Human Services (HHS) to update its materials on live organ donation to reflect these new protections and encourage more individuals to consider donating an organ.
The Living Donor Protection Act is cosponsored bySenators Cindy Hyde-Smith (R-MS), Ben Ray Luján (D-NM), Shelley Moore Capito (R-WV), Angus King (I-ME), Richard Blumenthal (D-CT), Tim Kaine (D-VA), Amy Klobuchar (D-MN), Jeff Merkley (D-OR), Sheldon Whitehouse (D-RI), Chris Coons (D-DE), Marsha Blackburn (R-TN), Pete Ricketts (R-NE), Thom Tillis (R-NC), Dick Durbin (D-IL), Jeanne Shaheen (D-NH), Tina Smith (D-MN), Ron Wyden (D-OR), and Mark Kelly (D-AZ).
The Living Donor Protection Act is endorsed by Alport Syndrome Foundation, American Association of Kidney Patients, American Council of Life Insurers, American Heart Association, American Kidney Fund, American Liver Foundation, American Nephrology Nurses Association, American Society of Nephrology, American Society of Pediatric Nephrology, American Society of Transplant Surgeons, American Society of Transplantation, Dialysis Patient Citizens, Global Liver Institute, IGA Nephropathy Foundation, International Society of Glomerular Disease, Kidney Transplant Collaborative, National Kidney Foundation, the Nonprofit Kidney Care Alliance (NKCA), North American Transplant Coordinators Organization, Northwest Kidney Centers, the PKD Foundation, the Rogosin Institute, Sanofi, the United Network for Organ Sharing (UNOS), Transplant Recipients International Organization (TRIO), and Renal Physicians Association.
“The selfless individuals who give the gift of life by donating a kidney should not face discrimination by life, long-term care, or disability insurers,” said LaVarne Burton, President and CEO of the American Kidney Fund. “This legislation would be a significant step in efforts to encourage more living donors and reduce the kidney transplant waiting list by providing the protections that living donors should receive for their lifesaving actions.”
“The Living Donor Protection Act is a critical step forward in protecting those who make the selfless choice to save lives through organ donation,” said Kevin Longino, CEO of the National Kidney Foundation and a transplant recipient. “By removing barriers and ensuring donors don’t face discrimination, we can help address the national organ shortage crisis and save more lives. I thank Senators Cotton and Gillibrand, and Representatives Bacon and Nadler, for their leadership, and I strongly urge Congress to pass this vital legislation this year.”
“With nearly 9,300 people in the U.S. waiting for a liver transplant right now, the need for living donors is great. Approximately 25% of people on the liver transplant list will die waiting due to lack of available organs. The Living Donor Protection Act is critical to helping level the playing field for living organ donors, ensuring that they are not discriminated against in obtaining life, disability or long-term care insurance and have job protections for medical leave after donation. We are so grateful to Senators Cotton and Gillibrand and Representatives Bacon and Nadler for stepping up for living organ donors and patients throughout the country,” said Lorraine Stiehl, CEO, American Liver Foundation and caregiver to a transplant patient.
“ASN commends the re-introduction of the Living Donor Protection Act, critical legislation which will remove barriers that discourage living donors from providing the life-saving gift of a kidney transplant,” said ASN President Prabir Roy-Chaudhury, MD, PhD, FASN. “Americans who are considering becoming living donors deserve more support than the current system provides for them, and ASN believes the Living Donor Protection Act is a critical step to achieve this goal.”
“As a pioneer in transplantation since performing New York State’s first living donor kidney transplant in 1963, The Rogosin Institute believes that kidney transplantation is the ideal treatment for patients with end-stage kidney disease,” said the Rogosin Institute. “We are proud to wholeheartedly endorse the Living Donor Protection Act removing barriers to donation such as insurance uncertainty and financial insecurity. Rogosin extends our thanks to the bipartisan members of Congress supporting this critical legislation. We thank Senators Gillibrand and Cotton and Congressmen Bacon and Nadler for championing the Living Donor Protection Act.”
“As nonprofit dialysis providers, kidney transplant is an ideal outcome for many of our patients and legislation to protect and support living donors is critical to our patient-centered mission,” said Monica Massaro, Executive Director of NKCA.
“Living organ donors save people’s lives and should be able to give the gift of life without fear of insurance discrimination or financial retribution, especially as they recover from surgery. The Living Donor Protection Act rightfully protects these selfless individuals from this,” said Maureen McBride, Ph.D., CEO of the United Network for Organ Sharing. “Thank you, Sens. Cotton and Gillibrand and Reps. Bacon and Nadler for your bipartisan leadership and for standing up for living organ donors.”
“On behalf of the American Society of Transplantation (AST), representing a majority of the nation’s transplant professionals, our Society strongly applauds and endorses the re-introduction of the Living Donor Protection Act (LDPA),” said Dr. Jon Kobashigawa, President, American Society of Transplantation (AST). “AST is grateful for the ongoing and steadfast leadership of Senators Cotton, Gillibrand and Representatives Bacon and Nadler to protect transplant patients and strengthen living donation. The LDPA is a patient-focused bill seeking to remove policy barriers that might otherwise prevent an individual from providing a lifesaving donor organ. AST greatly appreciates this bipartisan, bicameral, and patient centric legislation. We look forward to working with you to advance the LDPA in this 119th Congress.”
“Life insurers support helping more people access financial protection for themselves and their families,” said American Council of Life Insurers President and CEO David Chavern. “The Living Donor Protection Act lets organ donors access life, disability, or long-term care coverage while recognizing fair underwriting practices. It’s an important initiative that will protect those who save lives through organ donations.”
“On behalf of all kidney patients, organ donors and American taxpayers, the American Association of Kidney Patients salutes U.S. Senators Tom Cotton and Kirsten Gillibrand and U.S. Representatives Don Bacon and Jerrold Nadler for introducing the bipartisan Living Donor Protection Act so that living organ donors will no longer face the Hobbesian choice of saving an innocent human life at the risk of losing insurance coverages that provide economic security and peace of mind to their families and loved ones. The time is now for America to transcend high-cost, high-mortality dialysis care as the default solution for people living with kidney failure and to encourage greater living organ donation and greater transplant opportunities for all Americans in need of a life-saving organ,” said Edward V. Hickey, III, President of the American Association of Kidney Patients.
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