Statement of Policy Principles and Solutions: Living Organ Donation from the Living Donor’s Perspective (May 3, 2023)
The American Association of Kidney Patients (AAKP), the American Society of Transplant Surgeons (ASTS), and the American Society of Transplantation (AST), recently released a joint statement of policy principles and solutions for living organ donation.
It read, in part, “we stand together in our conviction that any policy changes impacting living organ donation…must begin with principled and transparent dialogue with patients and the expert transplant teams who care for them.” Yet this left out one key stakeholder: living donors.
As the President and Chief Executive Officer of the National Kidney Donation Organization (NKDO), and a living kidney donor, this joint statement was difficult to read. It talks about living donation but did not include the perspective of living donors. Of the three organizations’ collective boards—25 total individuals—only one is publicly identified as a living donor.
The National Kidney Donation Organization is the largest living donor advocacy group in the US (and world), with over 2,500 members. We are donors, and we work every day to make more donations possible through our robust mentorship program. Our nearly 50 donor-mentors have reached out to 25,000 prospective donors at 41 transplant centers since 2021. We’ve mentored 500 donations to date, and anticipate that number will surpass 1,000 by year’s end. Most importantly, we can demonstrate that when a prospective donor speaks to one of our highly trained donor-mentors, it roughly triples the propensity for living donation.
For too long, the needs and interests of living donors have been systematically sidelined. Take one example, at the upcoming American Transplant Congress 2023, where there is a discussion program dedicated to “Removing Disincentives to Living Donation.” The session includes five speakers—none are living donors (based on accessible biographical information). This is as unacceptable as it is unhelpful. If a goal is to “eliminate disincentives” for living donation, then including living donors as part of transplant’s premier annual event makes sense. Living donation starts with living donors. Going forward, AAKP, ASTS, and AST might consider a rule: always include living donors when discussing living donation.
NKDO shares the AAKP, ASTS, and AST vision that living donation is key to solving America’s kidney crisis. We are committed to this in a very special way. Bluntly, we have skin in this game. Our members and mentors repeatedly say their only regret was that they could give just once. That passion drives our efforts to get the word out to more Americans—that you can donate a kidney, save a life, and continue to live an even bigger one of your own.
The day I read the AAKP, ASTS, and AST joint statement, one of my mentor calls was to a prospective donor who is a truck driver. He wants to donate, but also mentioned that if he’s not driving, he’s not earning, and he needs that income. He asked, “what happens if something goes bad and I can’t drive anymore?” While the joint statement aspired to “remove disincentives,” it provided no ready-made solutions to this prospective donor’s challenges.
What living donor candidates, like this gentleman, need now is not more research, innovation, or legislation—they need support and protections. Assurance that the costs associated with living donation are always covered. A blanket set of protections, tailored to a donor’s needs, like the “Donor Shield” product already out in use, with provisions for lost wages, travel and lodging, and any complications. Such protection costs centers approximately $3,000 per transplant. Considering that a 2020 report places the average US kidney transplant on the order of several hundreds of thousands of dollars—this living donor protection is a wise investment in eliminating disincentives.
Unfortunately, only a small fraction of US transplant centers disclose they offer such protections to all living donors. Consider that prospective living donor. Whether he’s extended these protections shouldn’t be based on where he lives or what center he goes to—a zip code lottery that far too many living donors lose.
We would never expect a transplant surgeon to walk into an operating room without adequate (insurance) protection tailored to their needs. Living donors deserve the same.
That’s why NKDO is committed to achieving universal protections for living donors. Every donor, any donation. With a unified effort, we can remove this significant disincentive without waiting on gridlocked legislative processes.
Living donation is a team sport, and the bigger the goal the bigger the team needs to be. The medical profession provides the expertise that makes transplant possible. Kidney patients help us see what we’re aiming for. Living donors, especially NKDO’s donor-mentors, provide education and, above all, trust. Nobody can talk to a prospective donor like a living donor who’s been there before—and convey the confidence that they can safely and successfully provide the kidney that saves another life.
The kidney crisis is too important to leave living donors on the sideline. NKDO members are ready to put their shoulders and voices into this great cause.
Matt Cavanaugh, PhD
Living Kidney Donor
President and Chief Executive Officer
National Kidney Donation Organization
For further information, please contact NKDO’s Executive Director, Lisa Emmott, email@example.com.