WASHINGTON, DC – Today, Representatives Suzan DelBene (WA-01), Larry Bucshon, MD (IN-08), Kim Schrier, MD (WA-08), and Carol Miller (WV-01) introduced legislation to provide more support to living organ donors and address the increasingly high costs of donation. The Expanding Support for Living Donors Act would remove financial barriers that prevent many people from donating life-saving organs.
Every day, 17 Americans die waiting for an organ transplant. There are more than 100,000 people on the transplant waitlist, with more than 66,000 people added last year. A transplant provides a new lease on life, but our current system is insufficient to meet the needs of patients.
While the rate of deceased donations has improved in recent years following Congressional action, the rate of living donations has flatlined over the past two decades. This is largely due to the high out-of-pocket costs of donating, which can exceed $10,000. Travel expenses, child care, and lost wages from missing work are all major costs that donors can incur in the process. The existing federal donor reimbursement program only provides up to $6,000 for donation-related expenses, which is often not enough, and income restrictions disqualify many people from accessing these benefits.
“Donors give the gift of life to their fellow Americans, but for too long the system hasn’t been designed to fully support them. This legislation would remove unnecessary financial barriers that have prevented many from donating. As the transplant list continues to grow longer and longer, we must take bold steps to support living donors,” said DelBene.
“As a physician and current Co-Chair of the Congressional Kidney Caucus, I recognize the life-saving impact organ donations have on thousands of Americans each year. Unfortunately, our current system fails to meet patient demand and living donations have flatlined over the past two decades, in part due to out-of-pocket expenses that exceed the current reimbursement cap under the Living Donor Reimbursement Program,” said Dr. Bucshon. “The Expanding Support for Living Donors Act would broaden eligibility for the program and increase the maximum reimbursement to $10,000, providing living donors with the critical financial support they need to continue saving lives.”
“Living donors are a blessing to those who have life-threatening diseases and need an organ transplant, but they are also rare given how expensive donating an organ can be. The last thing a donor should have to worry about is whether they can afford this kind of procedure. It’s important that these individuals have access to financial aid along with additional support needed to move forward with the donation process. I joined Congresswoman DelBene in introducing the Expanding Support for Living Donors Act to reauthorize the Living Organ Donation Reimbursement Program and remove the current income restrictions which affect whether a donor is reimbursed. This bill will ensure low-income individuals are appropriately compensated for their life-saving donations and increase the number of donations available to those in need,” said Miller.
“As a doctor, I have seen firsthand the life-changing impact that organ donations have and know that these donations add years to recipients’ lives, giving them a new lease on life and precious, additional time spent with their family and loved ones,” said Dr. Schrier. “However, living donors often face financial barriers when trying to donate, such as travel costs and lost wages. I am proud to support this legislation, which will help address this issue and hopefully increase donations by expanding financial assistance to living donors.”
The bill would:
- Reauthorize the Living Organ Donation Reimbursement Program through 2035.
- Increase the maximum reimbursement amount to $10,000 (pegged to inflation).
- Double the income eligibility to about $100,000 a year.
- Make reimbursement eligibility based on the donor’s income instead of the recipient. This mirrors the Honor Our Living Donors (HOLD) Act (H.R. 6020), which was marked up with unanimous approval in the House Energy and Commerce Committee in July 2024.
The bill is supported by the following patient advocacy and medical groups: National Kidney Foundation, American Society of Nephrology, American Society of Transplantation, Nonprofit Kidney Care Alliance, American Kidney Fund, Waitlist Zero, Centers for Dialysis Care, Central Florida Kidney Centers, Independent Dialysis Foundation, Northwest Kidney Centers, Puget Sound Kidney Centers, Renal Physicians Association, American Society of Pediatric Nephrology, American Society of Transplant Surgeons, American Association of Kidney Patients, American Liver Foundation, American Nephrology Nurses Association, and Dialysis Patient Citizens.
“The stakes could not be higher,” said Kevin Longino, CEO, National Kidney Foundation and a transplant recipient. “Twelve people die in the U.S. every day waiting for a kidney. This bipartisan effort to enhance NLDAC is a crucial step toward saving more lives, and we urge lawmakers to act swiftly to pass this critical legislation. Living donors make an extraordinary sacrifice to save lives, and they should never face financial obstacles in the process.”
“Donating a life-saving organ is one of the greatest possible gifts. The American Society of Nephrology believes that living donation should be a cost-neutral act and commends the introduction of the Expanding Support for Living Donors Act. This bill breaks down barriers to living organ donation by covering out-of-pocket costs incurred during the living donation process for most Americans, enshrining our nation’s commitment to those who give the gift of life,” said Deidra Crews, MD, President, American Society of Nephrology. “By better supporting living donors, this legislation will improve the lives of people with kidney failure by expanding access to the best-known treatment – a kidney transplant.”
“The American Kidney Fund is proud to support the Expanding Support for Living Donors Act, which would increase the number of kidneys available for donation by making living donation more affordable for donors,” said LaVarne Burton, President and CEO, American Kidney Fund. “The kidney transplant waiting list currently has over 90,000 people on it; in 2023, roughly 1 in 4 of those waiting for a kidney were transplanted. This bill could provide renewed hope to those awaiting a lifesaving kidney transplant.”
“Every day at Northwest Kidney Centers, we watch as so many of our patients await the call that a kidney is available and that they will receive a life-saving transplant. Sadly, many never receive that call. In the last decade, the number of kidney transplants from living donors in the United States has remained flat, despite many more individuals living with kidney failure, which is why we proudly support the Expanding Support for Living Donors Act,” said Matthew Rivara, MD, Chief Medical Officer, Northwest Kidney Centers. “This legislation will provide a critical reauthorization of the important Living Organ Donation Reimbursement program and will provide needed relief for a greater number of living donors by substantially increasing the income eligibility threshold and allowed amount for expense reimbursement. These changes are essential to a future in which more individuals donate so those awaiting transplant get that life-changing call before it is too late.”
“For many patients, kidney transplantation can improve survival and quality of life. However, several barriers currently exist that limit the availability of living donor kidneys. This bill would remove many of the constraints for potential organ donation, expanding the pool of donor kidneys and opportunities for organ transplantation. We appreciate our congressional representatives for championing efforts to improve the lives of those suffering with kidney disease and urge their colleagues to also support this bill,” said Raghu Durvasula, MD, Chief Medical Officer, Puget Sound Kidney Centers.
The text of the legislation can be found here.
