I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: F.A.Q. (Frequently Asked Questions) => Topic started by: Restorer on November 01, 2012, 12:08:53 PM

Title: Your Score on The Waiting List
Post by: Restorer on November 01, 2012, 12:08:53 PM
Yesterday I stumbled across the official policy for allocating kidneys. I read through it, and as written, it was fairly complex. I figured I'd summarize it and post it here.

Your "place" on the waiting list is more like a score, and it varies depending on the available kidney. Here's how you calculate your score.

- Your relative place on the waiting list, by time. The person at the very top of the waiting list, spot #1, who has been waiting the longest, gets 1 point. Everyone else gets a fraction of a point equal to their place on the list, sorted by time waited. If you're #200 out of 2000 people on the list in your area, you get 1800/2000 = 0.9 point.
- The number of years you've been on the list. For every full year you're on the list, you get 1 point. If you've been waiting exactly 2 years, you get 2 points. If you've been waiting 2 years and 11 months, you still get 2 points.
- PRA/Sensitization. If your PRA is greater than 80%, you get 4 points.
- Previous living donor. If you've previously donated a kidney, you get 4 points.
- Pediatric status. If you're under age 10, you get 4 points. Under age 18, you get 3. (This seems to confuse my nurses and techs, who keep telling me I'll get a kidney sooner because I'm young. 27 isn't young enough to qualify for any special treatment under the current system.)
- Your match with the donor kidney. As far as points go, they only count the two DR-type antigens. If there are 2 matches, you get 2 points. 1 match, 1 point. 0 matches, 0 points.
- There are no points for medical urgency, except in very rare circumstances, in agreement between all local transplant centers.

In addition, perfect matches go preferentially (and almost exclusively) to pediatric patients and patients with a PRA > 20%, whether locally, regionally, or nationally. If you would have received a kidney, but it was a perfect match for someone else with a raised PRA, you will get the very next compatible kidney ("payback").

Kidneys from donors under 35 go to pediatric patients first, unless it's perfect match for a sensitized patient (PRA > 20%), or a match for a highly sensitized patient (PRA > 80%) with more points than anyone else.

Edit: The official policy is here (http://optn.transplant.hrsa.gov/policiesAndBylaws/policies.asp), under Section 3.5 - Allocation of Deceased Kidneys (http://optn.transplant.hrsa.gov/PoliciesandBylaws2/policies/pdfs/policy_7.pdf) [pdf].

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That means that right now, I have somewhere between 0.1 and 0.15 point at CPMC and somewhere slightly over 4 points at UCLA. Come January, I'll get another point at CPMC. I have a long way to go.
Title: Re: Your Score on The Waiting List
Post by: okarol on November 02, 2012, 01:57:28 AM
Interesting, thanks.  :thx;
Title: Re: Your Score on The Waiting List
Post by: drgirlfriend on November 02, 2012, 10:20:52 AM
Thanks, Restorer! Where did you see the full official version?
Title: Re: Your Score on The Waiting List
Post by: bleija on November 02, 2012, 11:19:03 AM
that is really interesting. im glad my brother was able to donate, being 21 and him 22. not that i wouldnt take a 35 yr old kidney, happy thqt i got a younger one. my creatinine was .95 last blood draw. :)
Title: Re: Your Score on The Waiting List
Post by: Restorer on November 02, 2012, 05:15:17 PM
Oops! I was going to link to the official policy, but I forgot to put that in. It's in the OPTN Policies (http://optn.transplant.hrsa.gov/policiesAndBylaws/policies.asp), Section 3.5 - Allocation of Deceased Kidneys (http://optn.transplant.hrsa.gov/PoliciesandBylaws2/policies/pdfs/policy_7.pdf).
Title: Re: Your Score on The Waiting List
Post by: drgirlfriend on November 02, 2012, 08:48:51 PM
Thanks for the links!
Title: Re: Your Score on The Waiting List
Post by: Deanne on November 09, 2012, 09:02:24 AM
This made me wonder where I am on the list so I called to ask. Do most centers tell you your placement on the list? All they'd tell me is the scoring system, that they haven't yet tried to cross-match me with any donor, and that the average wait time for my blood type is about 2 years. I should've asked how many points I have, but I can figure that out for myself. It isn't hard to add up to 1.