Today members from the American Society of Nephrology (ASN) and advocates from 21 patient and professional kidney health organizations are expected to conduct nearly 150 virtual meetings—among key Congressional offices representing dozens of states—as part of a Kidney Community Advocacy Day event focused on advancing the Living Donor Protection Act (H.R. 1255/ S. 377). 

Sponsored by Senator Kirsten Gillibrand (D-NY), Senator Tom Cotton (R-AR), Representative Jerry Nadler (D-NY), and Representative Jaime Herrera Beutler (R-WA), the bill would prohibit discrimination against living donors obtaining life, disability, and long-term care insurance. It would also improve job security for living organ donors by codifying an existing Department of Labor opinion that living donors are eligible for unpaid time off from work through the Family Medical Leave Act to recover from their donation surgeries. 

“ASN commends Representative Nadler, Representative Herrera Beutler, Senator Gillibrand, and Senator Cotton for introducing the Living Donor Protection Act, important legislation which will remove barriers that discourage living donors from providing the life-saving gift of a kidney transplant,” said ASN President Susan E. Quaggin, MD, FASN. “ASN is committed to increasing the number of kidneys available for transplant and increasing equity in the US transplant system, the Living Donor Protection Act is a critical first step to achieve these goals.” 

For many people with kidney failure, a transplant offers longer survival, greater quality of life, and lower associated costs compared to dialysis. But the waitlist is long, and the waiting time is usually measured in years and varies across the country. Nephrologists have called for more transparency in the national kidney transplant waitlist, which currently makes it difficult for the nephrology care team to actively monitor whether a patient's status is active or inactive.

"It’s a tragedy that so many people die while waiting for life-saving organ donations,” Senator Gillibrand pointed out. “We must do more to remove the barriers that keep Americans from donating. The bipartisan 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. These protections are critical for individuals who choose to become living donors, and I will keep working with my colleagues across the aisle to finally pass this legislation."

Transplantation is the best option for most of the more than 800,000 Americans with kidney failure, as it improves patient quality of life and extends life expectancy while also costing Medicare less than long-term dialysis. But an organ shortage means there are 90,000 patients on the kidney transplant waitlist, and people die every day while waiting for a transplant.

“We lose a dozen American lives each day because folks are forced to wait too long for kidney transplants,” emphasized Representative Herrera Beutler. “But there’s hope here; there’s action Congress can take to help get more people this life-saving treatment before it’s too late. I’m proud to help reintroduce the Living Donor Protection Act that will protect living organ donors and remove barriers for those waiting in a long line to receive a transplant. I’m going to continue championing common-sense, bipartisan solutions that seek to match life-saving organs with the thousands of Americans who desperately need them.”

Only 24,000 people received a kidney transplant in 2021. On average, patients wait 3-5 years for a deceased donor kidney transplant, and in some states, the wait can be as much as 10 years. Yet a living donor transplant can occur in as little as 3–6 months. Increasing the number of living donors is crucial for improving patient access to transplantation. Unfortunately, living donors face many barriers in providing the gift of life. One in four living organ donors experience difficulty securing or paying for insurance.

“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,” recognized Representative Nadler. “The last thing they need in the midst of that challenging process is to be confronted by needless roadblocks or insurance discrimination. These roadblocks can make it economically impossible for potential donors to make that choice and, simply put, they are costing lives. That’s why I’m proud to cosponsor the Living Donor Protection Act, which seeks to knock down these needless barriers to lifesaving organ donation.”

A longstanding advocacy priority of ASN and the broader kidney health community, the Living Donor Protection Act ensures that living donors have access to life, disability, and long-term care insurance with full coverage and without higher premiums and codifies that the Family and Medical Leave Act protects the employment of living donors after taking time off to donate an organ. Moreover, by increasing living donation by 10%, Medicare could save between $250-780 million by avoiding more-costly dialysis.

Removing barriers to living donation is essential for increasing the number of organs available for transplantation. It is also essential for increasing equity in transplantation. Black Americans are 50% less likely to receive a kidney from a living donor than White Americans. Research consistently points to donation barriers, such as insurability and job security, as factors leading to this disparity.

“The Living Donor Protection Act would encourage more organ donors to step forward by protecting them from denial of insurance coverage, higher health-insurance premiums, and job loss,” said Senator Cotton. “Not only do living organ donors save lives, but these transplants have better patient outcomes and are more cost-effective for the Medicare system.” 

To learn more about Kidney Community Advocacy Day and how you can urge Congress to Advance the Living Donor Protection Act, visit bit.ly/KCAD-22 .