Why does the waiting-time for a kidney-donation differ so much?

[Sunny]

As always Okarol,
You have come up with facts to answer our important questions. Thanks.

[pelagia]

If you want to get into the technical material, the current policies in effect now are given here (link opens a pdf), which I've also attached below:

http://optn.transplant.hrsa.gov/PoliciesandBylaws2/policies/pdfs/policy_7.pdf

The new policies being considered are given here:

http://optn.transplant.hrsa.gov/kars.asp  or  http://www.unos.org/kars.asp

and here's the actual text:

Kidney Allocation Policy Development

Mission

The National Organ Transplant Act (NOTA) requires that the Organ Procurement and Transplantation Network (OPTN) develop medical criteria for equitable organ allocation. The allocation policy has always balanced considerations of justice and utility in organ allocation. Over time, the kidney allocation formula has become unbalanced because the utility component (HLA matching) has diminished in emphasis.

The OPTN/UNOS Kidney Transplantation Committee is charged with reviewing the current kidney allocation system and making recommendations for improvement of the system.

Background

The current kidney allocation system has been in place for over 20 years. During this time, some changes have been made, but the system cannot keep up with current trends in medicine. As waiting times for kidney transplant increase throughout the United States, the need for review of the current system and discussion of possible revisions is great.

Under consideration

The OPTN/UNOS Kidney Transplantation Committee considered many concepts and approaches to allocation over four years. Throughout its review, the committee has been including concepts that meet the requirements of the OPTN Final Rule and the UNOS Statement of Principles and Objectives of Equitable Organ Allocation. The committee is now considering the following three concepts which would work together to determine a candidate Kidney Allocation Score (KAS):

Life Years from Transplant (LYFT): Determines the estimated survival that a recipient of a specific donor kidney may expect to receive versus remaining on dialysis. LYFT is primarily a measure of utility.

Dialysis Time (DT): Time spent on dialysis allows candidates to gain priority over the period they receive this treatment, adding the essential element of justice into the allocation system.

Donor Profile Index (DPI): Provides a continuous measure of organ quality based on clinical information. DPI increases individual autonomy by providing a better metric for deciding which organs are appropriate for which candidates.

LYFT, DPI, and DT are incorporated so that kidneys are matched to candidates based on the expected survival of both the kidney and the recipient.

Currently, the concepts are under review by the U.S. Department of Health and Human Services (HHS) Office of Civil Rights (OCR). The OCR is assessing whether the concepts are consistent with applicable federal laws, including the Age Discrimination Act. If OCR finds the concepts to be consistent, we will circulate a formal proposal for public comment.

[Dan.Larrabee]

I have a few twists to the question.

1st. I don’t believe that how long you have been on dialysis has much to do with it. I received my call for transplant and was on the operating room table and had never been on dialysis.

2nd. You can decrease you wait time if you have Type I diabetes and opt for a kidney and pancreas transplant. When I was on the list for a kidney only, they told me my average wait was 2 years. When I qualified for a KP transplant (kidney – pancreas), they told me my average wait was 6 months.

3rd. I was told that Salt Lake City, UT had the highest number of organ donors listed per capita. They said many have even moved to UT and got on the list here because the average wait was only 2 years. I know that UNOS has the big list, but I wonder why geographic location has anything to do with it. Have you ever been told you can list with multiple centers? The UNOS pamphlet even says the same thing.

By the way, my kidney and pancreas came from a 22 Male in California. I was on the KP list for only 6 months and 13 days. 

[Sunny]

Well, if they are going to change the list criteria, I might as well throw in the towel and do everything in my power to make my kidneys fail now. Currently, I am doing everything to make my kidneys last as long as possible which means I'm going to be too old soon and not on dialysis and thus I won't be qualified. I find this discouraging. I try very hard to maintain my remaining kidney function, and it ain't easy. I guess I'll just start drinking, or become a drug addict, and start eating McDonald's hamburgers everyday. Then my kidneys will finally fail and I guess I'll get moved up that list!

[okarol]

When you need a kidney and a pancreas your status is different than just waiting for a kidney, because you cannot survive without a pancreas. The pancreas is a vital organ, performing functions necessary in the digestion process, so the recipient's native pancreas is left in place, and the donated pancreas is attached in a different location. I don't think you can compare the two wait time scenarios.

[kristina]

Well, if they are going to change the list criteria, I might as well throw in the towel and do everything in my power to make my kidneys fail now. Currently, I am doing everything to make my kidneys last as long as possible which means I'm going to be too old soon and not on dialysis and thus I won't be qualified. I find this discouraging. I try very hard to maintain my remaining kidney function, and it ain't easy. I guess I'll just start drinking, or become a drug addict, and start eating McDonald's hamburgers everyday. Then my kidneys will finally fail and I guess I'll get moved up that list!

Dear Sunny,
I sympathize with your concern (I am a few years older than yourself)
and I have no idea what to do for best either.
It seems for people on this age-borderline
there are several issues
which give us an uneasiness
and we don't know the answers.
Like yourself I "hang on" to my kidneys,
keeping to a kidney-friendly diet with a
controlled liquid-intake, weigh myself every day,
check my BP every day,
believing that to be the best for myself.

[dwcrawford]

Sunny ... shame on you... you're young.  What if  you were my age?  You'd surely have given up...(sometimes I feel like it but I'm just too cute... and too much fun to be around.... )

[pelagia]

Based on my reading, both the LFTY and DPI metrics will help to get kidneys to "older" folks.  I infer that under the new policy a kidney from an older donor is going to be more appropriate for an older transplant candidate than for a younger candidate.  On older kidney is not going to offer a younger candidate as much potential, so presumably the LFTY score goes down for a young candidate/older donor pair. In another way, this may not be the news any older candidate wants to hear - for example, kidneys from a 20 year old male who dies in an accident are probably not going to go to a 60 year old based on antigen matching.  I actually don't see any mention of antigen matching or PRA in the new policy.  Is that because it's not included at all, or is the Kidney Allocation Score (KAS) just a part of a new decision-making process? Another point is that the policy also states that the DPI, which provides a "continuous measure of organ quality" also "increases individual autonomy by providing a better metric for deciding which organs are appropriate for which candidates."  This would seem to build some flexibility into the system, but I suspect that in practice it would still play out so that that younger candidates would get the highest quality kidneys.

As for the time on dialysis (DT) criterion - this is clearly saying that those who are most in need get more points.  I can support that.  The LFTY criterion would work against those on dialysis (or not) whose overall health is such that they are at risk for not faring well after transplant (for example, someone with heart disease as well as kidney disease). 

Sunny, whatever the criteria, I think the healthier you can keep your body overall, the better you will fare in the long run.  You want that transplant team to think "she is an excellent candidate for transplant" when you walk through their doors.

[Stacy Without An E]

When I went to the orientation to get on the transplant list at UCSF, most of the information was old news because I had received two previous living donor transplants from family members.

We were in a small classroom and at the end of the presentation the speaker goes over the average wait for blood types.

I'm O Negative.

When she reached the O's, she said, "...you have an average five to eight year wait."

My jaw dropped and I blurted out the F-word.

Its been five years, two months and a handful of days and not one call.

It was suggested by a reader of my blog that I try applying to other hospitals nearby (Los Angeles and Portland)

I have called both hospitals numerous times and not one call back.

The transplant list is confusing, secretive, and the bane of my existence.

May all the members of IHD find their "mythical" kidney one day. 

Because I've given up hope of it every happenning.

[petey]

Oh, no, Stacy, don't give up hope.

Marvin's name has been on the "list" for so long and his PRA is so high (98%).  But, we still have hope -- hope for a miracle, hope for a long shot, hope to beat the odds that are so stacked against him -- but hope just the same.

"He who has hope has everything."  (Arabian proverb)

[paris]

We have to keep living with hope.  Three years ago, I was told the wait time for me (O+ PRA100) was about 30 years or when hell freezes over.  Then I met JillD and Vandie.  They gave me hope.  Every year new things are being tried and new procedures created.  Two years ago, IVIG treatments weren't available at my center, now they are.  We just have to keep pushing for new procedures to be available in more and more centers.  Who knows what might be possible next year?   

[Sunny]

Amen Paris.
Things are always changing and science is constantly moving forward. That's why I hold out hope and won't give up (my above post was tongue in cheek).

[okarol]

Stacey,
When I was researching about getting Jenna multiple listed I called USF. The coordinator there told me the wait in the SF area was just as long as Los Angeles. He said other procurement areas had shorter waits. Nevertheless she was evaluated and accepted by California Pacific (looking back I don't know why we bothered, but it had been recommend twice by doctors down here in LA.) We never heard a word from them (no calls.) But when she multiple listed in La Jolla (and changed her primary wait time to their center) she got called twice as back up (she had 3 years and their wait time in 36 months on average.) If she hadn't had a living donor come forward I feel confident that she would have gotten a deceased donor kidney much sooner than here in LA. If we had to do it again I would go to San Diego again, and also list in Sacramento. Transferring your accrued wait time to the NEW center gives you good status at the new list you join, while you change your new status to your existing center. I hope that makes sense.
It's worth exploring.

[kristina]

When I went to the orientation to get on the transplant list at UCSF, most of the information was old news because I had received two previous living donor transplants from family members.

We were in a small classroom and at the end of the presentation the speaker goes over the average wait for blood types.

I'm O Negative.

When she reached the O's, she said, "...you have an average five to eight year wait."

My jaw dropped and I blurted out the F-word.

Its been five years, two months and a handful of days and not one call.

It was suggested by a reader of my blog that I try applying to other hospitals nearby (Los Angeles and Portland)

I have called both hospitals numerous times and not one call back.

The transplant list is confusing, secretive, and the bane of my existence.

May all the members of IHD find their "mythical" kidney one day. 

Because I've given up hope of it every happenning.

Dear Stacey,
I agree with petey, paris, okarol and Sunny. There is research going on all the time,
we only hear about the successes, but nevertheless, there are doctors
trying to find answers, I am sure.
Another point is that not too long ago I read
that more and more people in different countries
suffer from end-stage-renal failure.
The cost of more people having dialysis
might be another "incentive" to push science forward
to find a better solution.
Please don't give up hope.

[pelagia]

Stacey,
When I was researching about getting Jenna multiple listed I called USF. The coordinator there told me the wait in the SF area was just as long as Los Angeles. He said other procurement areas had shorter waits. Nevertheless she was evaluated and accepted by California Pacific (looking back I don't know why we bothered, but it had been recommend twice by doctors down here in LA.) We never heard a word from them (no calls.) But when she multiple listed in La Jolla (and changed her primary wait time to their center) she got called twice as back up (she had 3 years and their wait time in 36 months on average.) If she hadn't had a living donor come forward I feel confident that she would have gotten a deceased donor kidney much sooner than here in LA. If we had to do it again I would go to San Diego again, and also list in Sacramento. Transferring your accrued wait time to the NEW center gives you good status at the new list you join, while you change your new status to your existing center. I hope that makes sense.
It's worth exploring.

My husband changed where he was listed about a year into his wait (different center, same listing region).  The new center was very curious why he changed.  He told them that he felt like number not a person at the other center and that he was looking for more.

Stacey, I hope that you can find a center that treats you like a person, not a number.  Also, please don't forget that the statistics for waiting times for the various centers are on the web.  There's a thread about it here on IHD someplace. 

If anyone here on IHD ever needs assistance with finding information out there on the web, please let me know.  That's pretty much what I do for a living and I am happy to help if I can.