I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: okarol on July 12, 2013, 02:22:13 AM
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Who Gets the Kidney? 5 Changes to the Allocation System
Posted on July 11, 2013 by nkf _advocacy
More than 96,000 Americans are currently on the waiting list for a life-saving kidney and if this year follows the trend of years past, there will only be about 16,500 kidneys donated. Clearly, the demand is far greater than the supply and therefore, no policy for allocating donor kidneys can possibly match every patient in need with a donor. However, when it comes to deceased donor transplants, recently announced changes to the allocation rules are an improvement over the current system. These changes were made by the Organ Procurement and Transplant Network (OPTN) and the United Network for Organ Sharing (UNOS).
1) Priority for the Most Highly-Sensitized
Transplant candidates who are only likely to match with 0-2% of deceased donors (CPRA score of 100%-98%) because they are highly-sensitized will be placed at the top of the kidney transplant wait list in order to help increase their chance of receiving a transplant.
Candidates with a less than 1% likelihood of matching (CPRA score of 100%) will also get first priority at receiving a kidney from anywhere in the country if that kidney couldn’t be matched to a highly-sensitized patient with a CPRA score of 100-98% in the local transplant unit or region where the organ was donated. While these candidates are still likely to remain on the list for five or more years, this new prioritization will provide them more opportunities to receive a transplant than under the current system.
In addition, under the new policy, candidates with a CPRA score of 20% or above will be assigned priority points that will help improve their chance at receiving a transplant when a match is available.
2) Blood Type B and Minority Access
People on the waiting list whose blood type is B will be able to receive kidneys from donors with blood types A2 and A2B under the new policy. However, not all candidates with type B blood can successfully accept a kidney from A2 and A2B donors, so the candidate will first have to undergo a blood test to see how their body will respond to a donation with these blood types.
Since many minorities have blood type B, expanding the blood types from which type B candidates can receive donor kidneys may slightly increase the number of minorities receiving kidney transplants. This can, help reduce racial disparities in access to kidney transplantation.
3) Improvements to the Waitlist
The new policy sets back the clock for adults 18 years and older who are on the transplant waiting list to the day they started dialysis. Candidates will still be able to accrue time on the wait list when registered with a GFR of 20 ml/minute or less. So regardless of when a patient is actually evaluated for the transplant waiting list, once they are placed on the list, their time spent on dialysis counts in regards to how they are prioritized on the list. This policy reduces disparities in transplantation among the under-served who may not have been prepared to pursue the option of transplantation when first starting dialysis. For children under 18, waitlist time is established based on the day they registered for a kidney transplant or the day they began dialysis, whichever occurred first. Children will still be able to accrue waiting time without being on dialysis.
4) Life-Expectancy Matching for the Top 20% of Kidneys
The new policy will match recipients and deceased donors according to the “life expectancy” of the kidney in about 20% of the kidneys. Candidates who are expected to need a kidney for the longest amount of time will be matched with the kidneys expected to function the longest.
This policy scores deceased donor kidneys using the kidney donor profile index (KDPI) to determine how long the kidney is expected to last. Transplant candidates are also scored using the Estimated Post-transplant Survival (EPTS). The EPTS is not a score based solely on age, but on other health factors such as whether the patient had received a prior transplant, diabetes status and time on dialysis.
While it is likely that mostly younger, healthier patients will end up with lower EPTS scores and receive priority for the kidneys with a KDPI between 0-20% (the top 20% of kidneys expected to function the longest), this policy will encourage more efficient matching of donated kidneys. It may also reduce the number of repeat transplants for these recipients. In addition, candidates will have to consent to receive a kidney in the bottom 15% (a KDPI of 85% or higher) since these kidneys are expected to have a shorter functioning life span than kidneys with a lower KDPI. Kidneys with a KDPI of 85% or higher will also be offered to a wider geographic area. For those candidates who are more likely to immediately benefit from a transplant rather than remain on dialysis, this will allow quicker access to a kidney transplant.
5) Priority for Living Organ Donors
In the rare instances where a living donor (of any organ or part of an organ) needs a kidney transplant, they will also be given priority assignment for organs with any KDPI score, including those in the top 20%. The National Kidney Foundation believes prioritizing prior living organ donors is ethical and fairly honors the gift they made.
Exceptions
While rarely used, a transplant physician’s right to give a donated kidney out of order, due to medical urgency is protected under this policy. However, all physicians in the local transplant region must agree to the change.
The National Kidney Foundation anticipates that this new kidney allocation policy will protect the gift of life. The policy will extend the length of time a transplanted kidney functions for a recipient, improve equity in the waitlist and improve the ability for those with rare blood types and high sensitivity to receive a deceased donor transplant.
However, there are still too few kidney donors to meet the needs of the more than 96,000 patients on the kidney transplant waitlist. Learn more about organ donation today!
http://nkfadvocacy.wordpress.com/2013/07/11/who-gets-the-kidney-5-changes-to-the-allocation-system/
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Does "younger" necessarily mean "healthier"?
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You forgot to mention the rich, famous & politically connected such as Natalie Cole (self professed drug user which is normally a disqualifier from being on a transplant list), Dick Cheney (heart transplant), Carrol Shelby (Heart Transplant), Evil Knievel (liver Transplant), Steve Jobs (liver) also see: http://www.ranker.com/list/famous-kidney-transplant-recipients/david-jones
My advice is to learn to play guitar, sing and make your name known.
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I thought Cole received a directed donation from the donor's family - which is an end run around the list.
So if they are counting adult time from the day you started dialysis, how are they counting it for people with failing transplants? Do we get on the minute they admit it's failing, or do we have to wait until we reach that magic 20? (Like we're going to feel all that much better if we're hovering at 21 for a year or two....)
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I have a 2% chance of matching anyone (PRA of 98) and I have been on dialysis the second time around for 8 years.
So now I zoom to the top? S C O R E!!!
It really doesn't seem fair that I didn't get evaluated because I didn't want to do all the yearly tests and now my time COUNTS??
I can't hardly believe this.
:waving;
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You forgot to mention the rich, famous & politically connected such as Natalie Cole (self professed drug user which is normally a disqualifier from being on a transplant list), Dick Cheney (heart transplant), Carrol Shelby (Heart Transplant), Evil Knievel (liver Transplant), Steve Jobs (liver) also see: http://www.ranker.com/list/famous-kidney-transplant-recipients/david-jones
My advice is to learn to play guitar, sing and make your name known.
I wouldn't take a lot of notice of this list. There are three Australians in the first ten or so. Kerry Packer had a kidney donated by a friend/employee and to the best of knowledge no money was involved - if there was good luck to him. Charlie Perkins and Jimmy Little were both Australian aborigines. The aboriginal population has a much high rate of diabetes and kidney disease than the rest of the population, and neither Perkins or Little were rich or well known enough to skip up the queue. And I suspect queue-skipping is not done in Australia
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Last year I was in the hospital for problems after my transplant. When I left ICU and went to the floor they put me in this gigantic room with 3 couches, a table, and another small room attached. I had been on that floor before but not that room. They told me the small room had been a kitchen and they thought the room had been redone from Gov Bob Casey got his liver transplant. I enjoyed the extra space and the comfy couch. Some people said he jumped to the top but I have no idea.
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Ed and I wonder what this does to our spots on the list. kind of worried about it since I haven't started dialysis yet. But then I've been told I don't have good access points, so I worry about starting to early too.
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Its always annoyed me that people who have ruined their kidneys through drug use or poor management of diabetes and/or high blood pressure are given equal weight to people who have genetic kidney diseases. Not fair so much.
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Are these changes now in effect or going to be put into effect at a later date? Any details?
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I thought Cole received a directed donation from the donor's family - which is an end run around the list.
So if they are counting adult time from the day you started dialysis, how are they counting it for people with failing transplants? Do we get on the minute they admit it's failing, or do we have to wait until we reach that magic 20? (Like we're going to feel all that much better if we're hovering at 21 for a year or two....)
You are correct that Cole received a direct donation but does that change the history of drug use?
When my kidney of 14 yrs failed it took almost a year (including a course of anti-rejection drug prednisone which made me very sick and received a new fistula) to get back on dialysis. A few months after that I started the series of tests to get on the list and 3 months later I was listed and the counting of adult time started.
Eight years later I changed my transplant from 'active' to 'hold' because the company I worked for 22 years relocated to another state and the lifelong kidney transplant immunosuppressive drugs for kidney transplantation act did not pass.
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Are these changes now in effect or going to be put into effect at a later date? Any details?
They are set to start in 2014
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Its always annoyed me that people who have ruined their kidneys through drug use or poor management of diabetes and/or high blood pressure are given equal weight to people who have genetic kidney diseases. Not fair so much.
I say this all the time. You wanna dig your grave with a fork? Go ahead. Just make sure you finish the job.
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:bump; Bumping this for Lisa!
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Its always annoyed me that people who have ruined their kidneys through drug use or poor management of diabetes and/or high blood pressure are given equal weight to people who have genetic kidney diseases. Not fair so much.
I say this all the time. You wanna dig your grave with a fork? Go ahead. Just make sure you finish the job.
Sigh. I suppose there are some people with diabetes or hypertension that "dug their grave with a fork". But there are some of us who have eaten carefully, exercised lots, and still gotten diabetes, hypertension, and now kidney disease.
By very careful of blaming the patient. Many of those problems have genetic components as well. Sometimes damage may have been self-inflicted, but very often it is not. Even if it was, the drug abuse or other self-inflicted damage may have come about because of depression or other problems due to genetics or abuse.
cheers,
skg
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Is there any news on how this will be implemented? It seems that any sudden change would put a lot of people suddenly much higher on the list - it would give me an extra 3-4 points at CPMC based on the new list date alone. Has anyone found a link to the official, legal, technical description of the new system?
Edit: Never mind, I found the notice (http://optn.transplant.hrsa.gov/news/newsDetail.asp?id=1604). "Effective date: To be determined, implementation pending programming." In two phases, the first one to gather all the data needed and develop individual policies, and the second to actually implement it all. Late 2014 sounds optimistic, given the speed at which the medical bureaucracy moves. :banghead;