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Will UNOS break their promise?

Karen HandelmanTransplant News

Written by Martha Gershun, Guest Blogger

The day before I was scheduled for surgery at the Mayo Clinic in Rochester, MN to donate my left kidney to a woman I had learned about through the newspaper, I signed paperwork that would go to UNOS, the United Network for Organ Sharing, to ensure that I would receive priority if I ever needed a kidney transplant myself. I was scared about the upcoming procedure, but that promise – that I would go to the “top of the list” if my remaining kidney were to fail – calmed me. My kidney donation would keep my recipient off the transplant waiting list. In return, the system promised to have my back if I needed a replacement organ down the road.

Now UNOS is threatening to break that promise. A new proposal, the “continuous distribution” allocation system, went into effect on March 9 for the distribution of deceased donor lungs. A similar allocation system for kidneys, livers, and other solid organs is scheduled for implementation in the coming months.

Under the current UNOS allocation system, in place since 1996, patients are classified by “attributes,” and given points for variables such as estimated medical urgency, forecast post-transplant survival, placement efficiency, and candidate age and size. Two of these attributes – being a prior living donor or having a very rare blood type – give those patients absolute priority over otherwise similarly-situated candidates.

In contrast, under the new continuous distribution framework, multiple factors that contribute to a successful transplant will be considered simultaneously as part of the organ offer process. A candidate’s total weighted score will determine their prioritization for each available organ. No single attribute, including being a living organ donor, will now override the others.

According to UNOS, the goal of the new framework is to create a more fair, equitable, and patient-focused system for organ allocation, with special attention given to reducing racial and socioeconomic disparities. Published goals of the continuous distribution process include:

  • Prioritizing the sickest candidates first to reduce waitlist deaths
  • Improving long-term survival after transplant
  • Increasing transplant opportunities for patients who are medically harder to match
  • Increasing transplant opportunities for candidates with distinct characteristics like candidates under the age of 18 or prior living donors
  • Promoting the efficient management of organ placement

While the designers of the proposed improvements to the system clearly believe it will meet those goals, the framework’s failure to prioritize living organ donors in need of an organ is very concerning.

For more than 25 years, living organ donors have been promised that we would receive priority if we ever needed a transplant in appreciation for contributing an organ to someone in need. In practice, this meant living donors whose own organs failed, a very rare occurrence, have been prioritized above all other patient categories except those who are so highly sensitized only a few matches are possible. This will no longer happen. In fact, in the example presented on the UNOS website for lung patients on the transplant waitlist, this new framework shows the prior living lung donor moved from second on the waitlist to dead last. This happens because the new process lumps “prior living organ donor” in with all other candidate variables, rather than considering it as a top priority on its own, as before.

When I was deciding to donate my kidney five years ago, the promise that the transplant system would take care of me if my kidney health worsened gave me, and my family, confidence that my altruistic decision to become a living organ donor was not foolhardy. I don’t know if I would have chosen not to donate if I had understood that this promise could be rescinded by UNOS without my consent. But I do know that I feel horribly betrayed now to learn that it might happen.

Even worse, I am second guessing the encouragement that I gave to others considering donating kidneys after I did. I promised each of them – as I was promised – that they would have priority if they ever needed a transplant. Now UNOS is threatening to break that promise – to me, as well as more than 100,000 other living organ donors who have already given a piece of their body to save the life of someone else.

I am also concerned that this new proposal risks harming everyone still on the waiting list hoping for a generous living donor to step forward. Eroding this protection and peace of mind will surely dampen the enthusiasm of others considering living organ donation – whether to friends, family, or strangers. Since living organ donors account for more than 15% of all organ transplants in the U.S. (6,467 last year alone), this will mean fewer organs for everyone. If fewer people choose to become living donors, wait times will increase, people will get sicker, and lives will be lost.

UNOS must continue to give the highest possible priority to living organ donors if they should ever need a future organ. It is vital to honor the transplant system’s promise to those of us who have given an organ to save others. This will also reassure those who want to donate in the future, ensuring we maximize the supply of both deceased and living donor organs for transplantation.

Martha Gershun is a nonprofit consultant, writer, and community volunteer living in Fairway, KS. In 2018 she donated a kidney at the Mayo Clinic in Rochester, MN to a woman she read about in the newspaper. Her book, Kidney to Share (Cornell University Press, 2021), co-authored with John D. Lantos, MD, chronicles that experience.