Urgent Opportunity to Protect Living Organ Donors
On March 15, the United Network for Organ Sharing (UNOS), will close comments on their controversial new proposal to change the way deceased donor organs are allocated to patients on the transplant waiting list.
This proposal has a fundamental flaw, which will violate the trust of all prior living organ donors, while threatening to make our national organ shortage worse.
The new “continuous distribution” allocation system went into effect on March 9 for the allocation of lungs. A similar allocation system for kidneys, livers, and other solid organs is scheduled to go into effect over the following months. The opportunity for public comment on those proposals here, will close on Wednesday.
These new allocation frameworks are a stunning breach of the promise made to all living organ donors that if they ever needed a transplant they would go “to the top of the list.”
In practice this has meant that, since 1996, prior living donors on the transplant waiting list have been prioritized above all other groups except those who are so highly sensitized only a few matches are possible. Under the new continuous distribution system, prior living donors will receive extra points, but they will be run through an algorithm that simultaneously considers over thirty other attributes, including estimates of medical urgency, projections of post-transplant survival, placement efficiency, and candidate size and age. In the example shown on the UNOS website for lung patients waiting for a transplant, this process change meant the prior living lung donor moved down from second on the waitlist to dead last.
I am a living kidney donor. Five years ago I underwent surgery at the Mayo Clinic to give my left kidney to a woman I read about in the newspaper. Like all living donors I was assured that if my remaining kidney were to fail I would receive priority on the UNOS transplant waiting list for a replacement organ. That promise gave me confidence that my altruistic decision to become a living organ donor was not foolhardy; if I developed end-stage renal disease as a result of my donation or if my remaining kidney was damaged in an accident, the transplant system would take care of me.
Now, the proposed new UNOS allocation system will break that promise – to me, as well as over 100,000 other living organ donors who have already given a piece of their body to save the life of someone else.
The new UNOS allocation system is intended to be more fair, more flexible, and to increase system equity. But , instead, this new proposal risks harming all of those on the waitlist. If those considering living organ donation – to friends, family, or strangers – are dissuaded from donating by this change in policy, then there will be fewer organs to go around for everyone. Wait times will increase, people will get sicker, and lives will be lost.
It is vital that UNOS continue to prioritize living organ donors on the transplant waiting list, both to keep their promise to these altruists and to continue to reassure others who want to donate.
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.