The Deceased Kidney Donor Transplant Waiting List: Is it really 1 or 57?
The Kidney Transplant Waiting List
If you are waiting for someone to die to receive a kidney transplant, you are on the deceased donor kidney transplant waiting list. The list and how it works can be a bit confusing. This blog will discuss highlights of the waiting list. Another blog will discuss the kidney registries that are used for living kidney donors.
There are currently 90,309 people on the kidney transplant waiting list.
These people are either on dialysis or will need to start dialysis in the near future. They are waiting for someone to die in a very specific way (for example brain dead, in an intensive care unit, on a ventilator) and hope that the family is willing to donate their loved one’s organs. Unfortunately, less than 1% of people registered to be organ donors will be able to donate kidneys at death. That is one reason why there are so many people on the kidney transplant waiting list.
There are not enough kidneys.
There are 57 Organ Procurement Organizations (OPOs) that are paid by the government to distribute these deceased donor organs.
This is quite a complex system of how the organs are distributed. You can read more about OPOs HERE. The basic information that is considered about the recipient is:
- Blood type
- How urgent it is to get a kidney
- Time on the waiting list for a kidney
- Distance from the hospital of the donor
- Body size compared to the donor’s kidney
All the OPOs use the United Network for Organ Sharing (UNOS) computer system for matching organs with deceased donors and recipients. You can find out more about the matching HERE. Each OPO has a Donation Service Area (DSA). So there are 57 Donation Service Areas. Each color in the image map above is a different DSA.
Behind the scenes, each OPO has a list of regional transplant centers and their people that were worked up and are now waiting for a kidney. OPOs also have a list of hospitals where they get kidneys after someone has died. When a kidney becomes available, the kidney goes to a person in their OPO Donation Service Area. If there is not a match, then it goes to their regional waiting list. If a kidney cannot be matched in its region, is it then provided to OPOs outside the region to be matched.
So, there isn’t one waiting list, there are 57 regional waiting lists, waiting for someone to die in the right way.
The average wait time for a deceased donor kidney transplant is 5 years.
That is a long time to wait if you are someone on dialysis or getting close to dialysis. And it can even be longer in some regions of the country – up to 10 years. Most people will die waiting for a transplant. You can be on multiple lists (remember, there are 57 lists). It could be to your advantage to get on a list that has a shorter wait time than where you live. It will take some additional time and energy to find another transplant center to do this with. Transplant center information can be obtained HERE. You can sort by the center, distance, and state and find out:
- Deceased donor transplants in a year
- Living donor transplants in a year
- Getting a deceased donor transplant faster
- 1-year kidney survival
Many people are waiting for someone to die to get a kidney transplant. Instead of one list, there are really 57 lists, based on the Organ Procurement Organization regions. If you know someone on the list who might want a kidney transplant sooner than 5 years, consider trying to find a living kidney donor.
Maybe you would like to know if you are healthy enough to be a living kidney donor.
For help, go to Kidney Donor Conversations at www.MyKDC.org.
https://optn.transplant.hrsa.gov/data/view-data-reports/national-data/# (February 4, 2022)
Receive Living Kidney Transplant/Donor Updates HERE
Would you like more information about Living Kidney Donation, email us at info@MyKDC.org
Glenna Frey, APRN-CNS, is a nephrology nurse who donated her kidney in April 2017 to a stranger.
Amanda Frey, M.A., LMFT, LPC, is a Marriage & Family Therapist living with kidney disease.
Together, they co-founded Kidney Donor Conversations in 2018 to provide education about Living Kidney Donation.
My name is Rob Muraskin– I’m currently producing a show for National Geographic which concerns organ transplants, and am researching transplant statistics. On this webpage above, you write “Most people will die waiting for a transplant” and I’m wondering– is that statement specific to a deceased kidney donor transplant, or across the board for organ transplants? Could you share your source for this statistic? Many thanks!! Rob
Rob, thank you for your question and interest in organ transplants! This editorial by Frank McCormick explains it the best and I think will answer your question.
The Terrible Toll of the Kidney Shortage. https://jasn.asnjournals.org/content/jnephrol/29/12/2775.full.pdf
You might find these articles helpful also.
Removing Disincentives to Kidney Donation: A Quantitative Analysis. https://jasn.asnjournals.org/content/30/8/1349
Would government compensation of living kidney donors exploit the poor? An empirical analysis. https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0205655
A Cost-Benefit Analysis of Government Compensation of Kidney Donors. https://pubmed.ncbi.nlm.nih.gov/26474298/
Here is a recent podcast that Frank did about this topic on Donor Diaries “An Economist Perspective on the Value of a Kidney” episode 9. https://www.donordiaries.com/
Let us know if we can be of further assistance.