Living kidney donors rely on a promise to protect our future health. We’re scared it will go away

Five years ago, I donated my “spare” kidney at the Mayo Clinic to a woman I read about in the newspaper. Though living with only one kidney has risks, I was not particularly concerned about my own health. The clinic’s medical evaluation was extremely thorough, and I knew their highly conscientious selection committee would not approve me to be a living donor if they were even the slightest bit concerned the procedure would cause me long-term health problems. Furthermore, I was assured at every step of the process that if my remaining kidney should fail or be damaged, I would “go to the top of the transplant waiting list.”

That promise reassured both me and my family that it was safe to move forward with my donation. The day before my surgery, I signed the forms identifying me as a living kidney donor that would go to the United Network for Organ Sharing (UNOS), the national system that distributes deceased donor organs to those in need of a transplant. If my act of altruism put me at future risk, the nurse transplant coordinator assured me, these forms would guarantee my high priority status.

But that guarantee now feels less certain, because UNOS is changing the way deceased donor organs are allocated to those on the transplant waitlist. Under the current UNOS allocation system, put in place in 1996, two groups of people needing a kidney transplant receive absolute priority over otherwise similarly situated candidates: 1) those with very rare blood types, who are extremely hard to match, and 2) prior living donors like me.

In the new “continuous distribution” framework, all attributes will be considered at once, including estimates of medical urgency, projections of post-transplant survival, placement efficiency, and candidate age. While living organ donors will continue to receive extra “points,” no one attribute will decide an organ match. Each candidate’s total score, a calculation based on a weighted average of all attributes, will determine their prioritization for available organs. (Editor’s note: On Wednesday morning, after publication of this article, the Washington Post reported that the U.S. government plans to “overhaul the troubled U.S. organ transplant system, including breaking up the monopoly power of [UNOS,] the nonprofit organization that has run it for the past 37 years.” It’s unclear what this might mean for the new framework.)

The new framework is intended to combat the very real equity issues surrounding the allocation of scarce cadaveric organs available for transplantation. But this change is profoundly unsettling to living kidney donors around the country, prompting us to ask: Will my priority status be preserved?

In 2022, living donors accounted for more than 15% of all transplants in the United States, gifting a portion of their lung, liver, pancreas, or intestines or one of their two kidneys, the most commonly transplanted organ. UNOS is assuring advocates that it is well-aware of the importance that living kidney donors play in the complex system of organ transplantation. A statement issued by UNOS on March 16 affirms: “We wish to assure the community that the OPTN Kidney Transplantation Committee intends for both prior and future living donors to receive the same level of priority for a deceased donor organ in the new framework as they receive in the current allocation system.”

But we cannot be sure until the algorithm for kidney allocation is finalized. Simulated allocation models still need to be run this summer, followed by public comments and a final recommendation to the UNOS Board at its meeting in either December 2023 or June 2024.

Kidney donors’ concern is understandable. On March 9, UNOS’s continuous distribution system went into effect for lungs, the first organ to be migrated to the new framework. Next it will be rolled out for pancreases and kidneys, then livers and intestines, and finally hearts, the only organ that cannot be donated by a living person.

The communication surrounding this first effort did not look great for living donors. (Many people are surprised to learn that you can donate part of your lung. It’s possible, though very rare; only 253 such procedures have ever been done in the U.S., none in the past 10 years.)

In fact, the weights listed for different factors to be considered in the allocation algorithm were initially quite alarming, with prior living donors receiving only 5 points out of 100 (labeled as “5%” on the chart). That’s the same weight as travel efficiency, proximity efficiency, height, blood type, and antigen sensitivity and less than waitlist survival, post-transplant outcomes, biological disadvantages, patient access, pediatric status, and placement efficiency.

Only after an explanatory conversation with UNOS did I understand this is not as dire as it appears. Since no candidate will ever receive all 100 points, the five-point “bump” for being a prior living donor will, in almost all cases, move the candidate very near the top of the list. But this is complicated math, and no effort has been made to explain the implications to laypeople.

Even worse, in a hypothetical example of the continuous allocation distribution for lungs on the UNOS website, the graph shows a prior living donor dead last on a simulated “match run” of seven people in need of a lung transplant. There is a new disclaimer just added to the website that says “the points shown in the below sample match run were created as examples early in the project development and do not reflect the final points assigned to each part of the score.” This is no way to build trust among critical stakeholders!

In addition to keeping the promise made to all prior living kidney donors, UNOS’s priority protection is vital to encourage people considering living donation in the future — especially altruistic donors not seeking to save the life of a specific friend or family member. It is also important to reassure patients who may be reluctant to accept an organ from a living relative or close friend. Otherwise fewer people will offer organs for donation, causing longer wait times for those on the list.

There are currently more than 104,000 people on the U.S. transplant waiting list. In 2022, 6,465 living donors provided an organ — in most cases, a kidney — that took patients off that list, likely saving those lives and moving everyone else behind them on the list closer to receiving a lifesaving transplant. In the case of kidneys, living donations often last many years longer than deceased donor organs, reducing the need for repeat transplants, thus taking even more pressure off the waitlist.

When I offered my kidney to a stranger, I understood the physical and mental health risks I would be undertaking. I embraced them as the reasonable cost of saving someone else’s life. But I also trusted the transplant system to protect me if I needed a replacement organ in the future. It is imperative that UNOS ensure their new continuous distribution framework affirms the implicit contract our transplant system made with each of us who chose to donate a part of our own body to save the life of someone else.

Martha Gershun is a nonprofit consultant, writer, and community volunteer living in Fairway, Kan. Her book “Kidney to Share” (Cornell University Press, 2021), co-authored with John D. Lantos, M.D., chronicles her experience as a living kidney donor.