Chains: UNOS & NKR

[Patricia_Kravey]

Hello everyone,
I have passed all the tests to be a non directed donor. After reading Alvin E. Roth's book Who Gets What and Why I've connected with the idea that donor chains are extremely important for alleviating the number of people waiting for a kidney.

My transplant center has an excellent team, however, they don't work with the National Kidney Registry because of the cost. They do have a partnership with UNOS. I've heard that UNOS has had a lot of positive change the last several years (from reading Roth's book).

Does anyone have stories or advice about starting kidney chains through UNOS or NKR?

[Fr Pat]

     I have only read about the National Kidney registry, so I can't offer you any advice on comparing the two systems. You might want to post your question also at the FaceBook page of Living Donors On Line and also the Facebook page of Living Kidney Donors, as these days more donors check in there than here so you might get more responses with helpful information. I donated non-directed some 13 years back, before they had developed kidney chains.
   best wishes,
      Fr. Pat

[PastorJeff]

I donated through NKR to start a chain in 2012  Ask away.

[donor99]

My program worked with NKR until it became cost prohibitive, and now do our exchanges through UNOS. Both programs do an equally good job but with UNOS It's free!

[Karol]

Hello everyone,
I have passed all the tests to be a non directed donor. After reading Alvin E. Roth's book Who Gets What and Why I've connected with the idea that donor chains are extremely important for alleviating the number of people waiting for a kidney.

My transplant center has an excellent team, however, they don't work with the National Kidney Registry because of the cost. They do have a partnership with UNOS. I've heard that UNOS has had a lot of positive change the last several years (from reading Roth's book).

Does anyone have stories or advice about starting kidney chains through UNOS or NKR?

NKR has done 10 times as many paired donation exchanges compared to UNOS. If your center only uses UNOS, the wait will be longer.
Patients can multi list. My daughter is waitlisted in NKR through UCLA, and in both UNOS and Alliance for Paired Donation at Scripps Green Hospital in La Jolla, CA.

The OPTN/UNOS kidney paired donation pilot program has arranged 155 kidney transplants since its beginning on October 27, 2010.*
The National Kidney Registry has facilitated 1,540 kidney transplants through paired exchange since NKR became operational in 2008.**

* https://www.unos.org/kidney-paired-donation-pilot-program-five-years-of-lifesaving-service/
** http://kidneyregistry.org

[donor99]

Yes and the recipient only has to pay $3000 if they get a transplant. (some centers absorb the 3,000 dollar cost not all can)

[Karol]

Yes and the recipient only has to pay $3000 if they get a transplant. (some centers absorb the 3,000 dollar cost not all can)

I have never heard of the recipient paying the center fee. I'd love to speak to anyone you know who has.
If a center does few transplants, and is unwilling to invest in their own patient’s well-being, you may want to consider a different center.

[donor99]

Carol you need to do some fact checking before you make blanket statements, Maybe ask to see the contract that Programs need to sign to participate in the NKR. This person wishes to be a NDD in the UNOS program and he will not wait, but rather will help people very quickly. Yes NKR has done a great job and has done many transplants. Its easy to get things going without having to deal with that pesky Federal Over site that UNOS has to deal with. On December 1st there will be new regulations and requirements  for all  KPD programs, transparency is one of them. Lets see what happens when everyone has to play by the same rules. At the end of the day the best solution is to have one national program that everyone participates in, this way you don't have to participate in 2 or 3 programs....but one where all the pairs are entered. Having it be for free is not a bad thing.

[donor99]

also, the $3000 is not the center fee, it is the cost of the transplant, just like the SAC fee is not paid by the center but the patients insurance, why should they pay for this when the insurance company wont) its not the joining fee, the connectivity fee, the late data fee etc that the center pays to participate. Some centers choose to pay it, others do not, maybe they do better doing internal swaps, maybe they do just fine with UNOS or the Alliance, there are many large programs that do not participate with NKR  for many reasons and not being invested with their patients is certainly not one of them. There are 155 programs that participate with UNOS and hopefully that will continue to grow.

[Karol]

Nothing is free. We are all paying for UNOS fees.
The wait is longer because UNOS doesn't do daily optimizations to match people.
Having more programs is good, because the one program we have for deceased donor allocation is doing all they can, and it will take years before they can match living pairs efficiently.

[donor99]

There is a one time UNOS registration fee for the recipient (none for the donor) somewhere in the vicinity of 550 or 600 dollars last time I checked, it may be slightly higher now. They do update the system daily and do match runs 2X week with timely repairs of a match if needed. Lots of matches are found but fall through because of positive cross-match, Recipient ill or pair involved in another paired exchange. These things happen in the NKR and Alliance as well

[Patricia_Kravey]

I’ve seen many helpful replies from all of you on many different subjects on this forum so I was very grateful to see your responses- Karol I wish I was an O kidney donor so we could be having a different conversation, wishing you the best of luck.

I ask because my goal as a non-direct donor is for as many people to get high quality matches from my donation as possible. I only get to do this once and I want to make it count.

My preferred hospital works with UNOS rather than NKP. I’ve seen all the well-thought out material on NKR’s website and how long their chains can be.  I called NKP and asked what my transplant center needed to do be join NKR. NKR told me the transplant center only had to sign a piece of paper then there be would fee for coordinating the delivery of the kidney.

I also called another transplant center that currently works with NKR and the coordinator there was able to tell me it is a substantial fee for the transplant center to even join NKR then another fee each time a match is made. It was definitely the transplant center paying the center fee rather than the recipient though I’m not sure where the coordinating fee is covered.

Honestly, my evaluation is that NKR has a better chance of making longer chains with better matches because they seem to have more resources and do their matching more often-daily like donor99 said. It also sounds like NKR has been coordinating chains a lot longer than UNOS has been.

But after reading Roth’s book that showed confidence in the leadership of UNOS’ NKR program manager, Ruthanne Leishman, and speaking with her on the phone it sounds like UNOS’ strategy is to create smaller chains with 3-4 kidneys then leaving the chain open to create a another small chain. Where NKR is creating their very long chains all in one go.

Besides the NKR rep forgetting to mention my transplant center would need to pay a fee to join NKR he was very helpful and surprisingly encouraging that I should stick with my chosen transplant center (even if my transplant center wasn’t going to use NKR). The NKR rep and the UNOS rep were both very kind in answering questions I had about donating and kidney chains.

I think as long as no one on this forum is responding with sinister warning about either program I’ll feel comfortable going with UNOS since that is my preferred transplant centers preference.

While I was deciding if I wanted to donate through UNOS or to a person within my transplant center, my transplant coordinator found a match within the center-which put me a bit of a dilemma because I felt like I had to choose between the sensitized patient at my center or creating a kidney chain with a national organization like I’d set out to do. My proposed solution is to give my kidney to the sensitized patient within my transplant center then his paired donor agreed to give her kidney as the non-direct donor through UNOS.  All parties involved, including Ruthanne Leishman at UNOS, and the paired donor agreed this plan should work…so fingers crossed.

Both UNOS and NKR had really positive comments about my chosen transplant center so I hope the center has chosen a good match and the kidney takes. My surgery is set for Jan 12th.  Now trying to figure out and convey to my caretaker what the first couple weeks post surgery will look like-I’m finding many helpful posts here.

Just curious Paster Jeff, was NKR able to tell you how long the chain was you started- really making a difference for one person is what matters but it would be interesting to know what the outcome was.

[donor99]

From one Patricia to another...congratulations on your decision. Helping a sensitized recipient is outstanding, and their incompatible donor will give to another recipient and that recipients incompatible donor will give to another recipient and so on and so on. The chain will go on and on until it ends with the waiting list or a bridge donor that will continue the chain later on.

UNOS is a great choice, they do hold the OPTN contract that governs transplantation in the nation.

Good Luck, let us know how it goes!