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Author Topic: Living Donors are NOT a national priority in the U.S.  (Read 7388 times)

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Offline Donna Luebke

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Living Donors are NOT a national priority in the U.S.
« on: April 14, 2011, 03:12:23 PM »
I am asking all past donors and those pending to review what you were told regarding being given an allocation priority if ever needed a transplant? What did you understand this meant for you?

The recent changes to the deceased donor allocation policy prompted me to do a little research on the history of the "4 points" donors are given.  In the proposal was mention of the allocation priority only being at the local leel. Never heard this before and still cannot find the original 1996 policy.  What I found is that while being a previous living donor should give us 'preferred status' if should need an organ, it means nothing.  At a 2004 ACOT meeting, Dr. Robert Merion (U of MI) confirmed this when stated the 4 points means nothing in many donation service areas. 

The current OPTN policy giving donors priority is part of the 'allocation of deceased donor kidneys' stuff.  Here is what it says:

Priority on the Waitlist. A candidate will be assigned 4 points if he or she has donated for transplantation within the United States his or her vital organ or a segment of a vital organ (i.e., kidney, liver segment, lung segment, partial pancreas, small bowel segment). To be assigned 4 points for donation status under Policy 3.5.11.6, the candidate's physician must provide the name of the recipient of the donated organ or organ segment, the recipient's transplant facility and the date of transplant of the donated organ or organ
segment, in addition to all other candidate information required to be submitted under policy. Additionally, at the local level of organ distribution only, candidates assigned 4 points for donation status shall be given first priority for kidneys that are not shared mandatorily for 0 HLA mismatching, or for renal/non-renal organ allocation irrespective of the number of points assigned to the candidate relative to other candidates. When multiple transplant candidates assigned 4 points for donation status are eligible for organ offers under this policy, organs shall be allocated for these candidates according to length of time waiting. (OPTN Policy 3.5.11.6  Published November 9, 2010)

What this means to us:  where you live will determine how long you wait.  4 points gives us 4 years of credit on the wait list which in areas like LA, Boston, NY, Chicago and even Cleveland means nothing.  If you live in a donation service area (DSA) with long wait times, you will wait years.  What if I donated in a DSA with short wait time? Why not get a priority there?  My belief is that we were mislead to think that we had a national allocation priority up there with children and perfect HLA matches.  Some donors have been told they will automatically be #1 if need a transplant? If you are one of these--who told you this? Surgeon, coordinator, social worker?  Just because someone works in the industry does not mean they know OPTN policy.  If they did, they would be 100% compliant in donor followup data submission which has been a mandatory policy for 10 years. 

Next: I would like to take on the notion that living organ donors are 'fully informed'.  Suggest you get a copy of your donation medical records including the entire operative report (Anesthesia records, too).  The transplant community claims that living donation is only ethical in the setting that donors are fully informed. Since we are not, living donation in the U.S. has never been ethical.  I was never told my left adrenal gland would be sacrificed along with the kidney procurement; that I would be given Heparin, Mannitol, Lasix and 5 Liters of IV fluid intraop; and not told that my diaphragm would need 'reconstructed' since it was destructed with the removal of my 11th rib causing a pneumothorax.  I donated in 1994--finally read my donation records just this week.  Granted mine was an open lap but the surgery is essentially the same when comes to procuring the kidney.  There are risks with the lap not seen with the open--if a lap donor might want to read about your procedure in the Gruessner and Benedetti textbook.  Were you fully informed.  How much did the 5000 Units of IV Heparin given live liver donors contribute to the death of the man at the Lahey Clinic last spring?  No wonder I did not feel afraid for my surgery.  I had no clue what they were doing when I was asleep. 

Donna
Kidney donor, 1994    Independent donor advocate
MSN,  Adult Nurse Practitioner
2003-2006:  OPTN/UNOS Board of Directors, Ad Hoc Living Donor Committee, Ad Hoc Public Solicitation of Organs Committee, OPTN Working Group 2 on Living Donation
2006-2012:  Lifebanc Board of Directors

Offline Fr Pat

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Re: Living Donors are NOT a national priority in the U.S.
« Reply #1 on: April 14, 2011, 08:23:50 PM »
Dear Donna,
     A very informative document you recently shared on the LIVEDONOR listserv explained (if I have understood it correctly) that while there is a lot of variation on waiting time for a deceased donor kidney depending on where you live, the "median time" of waiting for a kidney is 1.37 years for a previous donor who has been credited with the "4 points", and the "median time" of waiting for a patient without those 4 points is 3.05 years.
So (while averages and median times include a lot of variations within them) a living donor could expect to have the waiting time cut in half (cut by about 1 year and 8 months).
     The document also stated that MANY living kidney donors in later need of a transplant were NOT credited with those 4 points, and the authors did not know why. So if we ever need a transplant and are put on the waiting list we should make SURE that those 4 points have been credited to us.
     Perhaps you could post the link to the whole document here as well, as I found it very informative?
         best wishes,
            Fr. Pat

Offline donor99

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Re: Living Donors are NOT a national priority in the U.S.
« Reply #2 on: April 15, 2011, 07:34:19 AM »
Donna, you are correct that the 4 points apply nationally. However any person who qualifies for the 4 points is prioritized at a local level above paybacks and children but below zero mismatches and renal extra renal. So prior living donors move near the top at a local level (ie in the sharing area where they live) It is my experience in NYC that it happens in several months. Patients will get offers rapidly but have the right to accept or decline. They may be offered an older kidney but wish to wait for a younger one. But they are prioritized in their local area. Its not perfect but prior live donors do not have to wait as long as other patients.

3.5.5.2 Exception for Prior Living Organ Donors. Kidneys procured from standard
criteria deceased donors shall be allocated locally first for prior living organ
donors as defined in Policy 3.5.11.6 (Donation Status) before they are offered in
satisfaction of kidney payback obligations.

Offline Donna Luebke

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Re: Living Donors are NOT a national priority in the U.S.
« Reply #3 on: April 15, 2011, 03:24:45 PM »
Donor99

This is not how the policy reads.  It says that your local surgeon will list you locally.  Might want to go to www.organdonor.gov and read the archived minutes from the May 6, 2004 ACOT meeting.  There is a section titled  Valuable Consideration—Preferred Status. 

Here is a snippet.

"It appears, then, that a waiting time advantage has been provided to kidney transplant candidates who are awarded four points for being a previous living donor…also noted that the allocation rule was recently modified to provide a greater advantage by giving candidates who are awarded four points top local priority for kidneys that are not shared as a 0-HLA mismatch.  (Note the repeated use of the word local, not national.  Then Share 35 passed giving priority to children. And we are behind a renal/non-renal patient.)

Kahan said that his impression is that the four points is not conferring a very great benefit. Living donors should perhaps be awarded six or eight points. The benefit could be extended to family members on a one-time basis. Merion said that four points does not mean a great deal in many areas.  Kahan asked if it would be possible to give them more points. Merion said that such an approach is basically planned obsolescence. The aim of the OPTN board was to give them ultimate priority after children, 0-HLA mismatch, and presensitized individuals. How often are they preempted? Kahan said that if we are talking valuable consideration without involving money, maybe we should give preference on waitlist to the family. "

The data does not bear out that donors are waiting a short time; just a shorter time. A few have died waiting and some never listed but chose to remain on dialysis.  Donors are told they will be automatically #1 if need a transplant.  There are still matters of donor's blood type, sensitization from pregnancies or if have had previous blood transfusions.  Have heard from donors who never were told about any allocation priority.  According to Bob Merion, it sounds like where you live will determine how quickly get transplanted.  In areas with long wait times, the points mean nothing.  Since Merion was part of the former SRTR and involved in data analysis, he probably has a better perspective on this issue.

Donor, 1994
Donna
Kidney donor, 1994    Independent donor advocate
MSN,  Adult Nurse Practitioner
2003-2006:  OPTN/UNOS Board of Directors, Ad Hoc Living Donor Committee, Ad Hoc Public Solicitation of Organs Committee, OPTN Working Group 2 on Living Donation
2006-2012:  Lifebanc Board of Directors

Offline Fr Pat

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Re: Living Donors are NOT a national priority in the U.S.
« Reply #4 on: April 16, 2011, 02:31:59 AM »
      I am still having trouble figuring out the meaning of the phrase in the next-to-last line: "In areas with long wait times, the points mean nothing". The study states that although the wait time varies a lot from location to location "...50% of the previous living donor registrants were transplanted in an estimated 616 fewer days (1.69 years)" than they would have been as non-donors. For someone on dialysis three times a week, that would mean not having to take an additional 264 dialysis sessions. From what I have heard from people who have been on dialysis, that would be quite a desirable achievement. Am I missing something?
     Fr. Pat

Offline Rob_h

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Re: Living Donors are NOT a national priority in the U.S.
« Reply #5 on: April 16, 2011, 10:13:25 AM »
Nothing was said to me about the four points or moving to the front of the list. 

Personally I would rather see a big effort made to expand the number of living donors, and/or find the causes of living donors becoming in need of transplant years later.  I am in favor of doing things for donors that do not disadvantage others, thus looking out for the future medical needs of donors seems worth considering.  But the points is too zero sum for me. best wishes, Rob Halverson

Offline Donna Luebke

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Re: Living Donors are NOT a national priority in the U.S.
« Reply #6 on: April 16, 2011, 07:05:57 PM »
John,

Since you are on the Board and the Kidney Committee, can you get an interpretation of this (previous) living donor allocation priority.  A donor has posted on the NKF listserve that was an altruistic donor who was told that if needed a kidney, would be on top of the list and also would any family member.  Some have never heard and some have heard about moving up on the list but not about '4 points'.

If there is a program out there telling any donor that they and their family get a priority, this is a huge problem. The current Kidney policy proposal to me reads as though we would be as though we are only locally listed and locally offered.  This information needed to be part of a standard donor consent packet. 

Thanks--not sure what you, Tom or Vicky were told. 
Donna
Kidney donor, 1994    Independent donor advocate
MSN,  Adult Nurse Practitioner
2003-2006:  OPTN/UNOS Board of Directors, Ad Hoc Living Donor Committee, Ad Hoc Public Solicitation of Organs Committee, OPTN Working Group 2 on Living Donation
2006-2012:  Lifebanc Board of Directors

Offline donor99

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Re: Living Donors are NOT a national priority in the U.S.
« Reply #7 on: April 17, 2011, 11:04:17 AM »
Donna,

The minutes from the ACOT meeting discussion are not the policy that is in UNOS. Every prior living donor gets 4 points that apply nationally, locally they are prioritized as already discussed. There are no points for family members so if that is being stated somewhere they are wrong. I am on the kidney committee as well. I'm also am on call for kidneys as a transplant coordinator and what I've stated already is what is currently in practice.

Many new ideas are being discussed, but this is the current policy as it is being practiced in the country.

Best,
Pat

Offline donor99

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Re: Living Donors are NOT a national priority in the U.S.
« Reply #8 on: April 17, 2011, 12:02:05 PM »
also if you can get through the language it actually says what I'm saying in the policy:

Priority on the Waitlist. A candidate will be assigned 4 points if he or she has donated for transplantation within the United States his or her vital organ or a segment of a vital organ (i.e., kidney, liver segment, lung segment, partial pancreas, small bowel segment). To be assigned 4 points for donation status under Policy 3.5.11.6, the candidate's physician must provide the name of the recipient of the donated organ or organ segment, the recipient's transplant facility and the date of transplant of the donated organ or organ
segment, in addition to all other candidate information required to be submitted under policy. Additionally, at the local level of organ distribution only, candidates assigned 4 points for donation status shall be given first priority for kidneys that are not shared mandatorily for 0 HLA mismatching, or for renal/non-renal organ allocation irrespective of the number of points assigned to the candidate relative to other candidates. When multiple transplant candidates assigned 4 points for donation status are eligible for organ offers under this policy, organs shall be allocated for these candidates according to length of time waiting. (OPTN Policy 3.5.11.6  Published November 9, 20

the category is prior living donor and each donor gets 4 points

this is the tricky part

 Additionally, at the local level of organ distribution only, candidates assigned 4 points for donation status shall be given first priority for kidneys that are not shared mandatorily for 0 HLA mismatching, or for renal/non-renal organ allocation irrespective of the number of points assigned to the candidate relative to other candidates. When multiple transplant candidates assigned 4 points for donation status are eligible for organ offers under this policy, organs shall be allocated for these candidates according to length of time waiting. (OPTN Policy 3.5.11.6  Published November 9, 2010)

at the local level candidates assigned 4 points for donation (the category) will be given priority.....they are not competeing with Cleveland or California but with other patients in their category (prior living donor) and DSA.....they are above everyone except 0 mismatches and renal extra renal in that sharing area "irrespective of the number of points assigned to the candidate relative to other candidates" ie  candidates in other categories ...paybacks,  kids other adult candidates. (a waitlisted adult could have a million points and the donor still moves above.)
In the event of a multiple live donors in the same sharing area competing against eachother in their category the will be prioritised by waiting time.

I know UNOS is trying to simplify policy language but it will take some time. And yes in a perfect world a prior live donor should get the next suitable kidney from anywhere in the country but its not likely that everyone would ever agree to that. But the truth is that donors do get near the top of the list and do experience shorter waiting times in their sharing area.  Im my sharing area a donor who is not sensitized waits a few months.  Far better that the average wait in my DSA of 5-7 years

Hope this cleared it up....the document from 2004 you cited muddies the water but remember its from 2004 and not now.
 

 

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