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Author Topic: New kidney donation system could change who gets the best organs  (Read 3454 times)
justme15
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« on: September 22, 2012, 05:48:12 PM »

http://news.yahoo.com/kidney-donation-system-could-change-gets-best-organs-154846916.html?_esi=1


The way that donated kidneys are allocated to patients needing transplants might be changed in the next few years, so that the fittest organs would be given to those likely to live the longest with the donated organ.
That was the announcement today from the United Network for Organ Sharing (UNOS), the nonprofit organization that manages organ donations in the U.S.
More than 93,000 people in the United States are on the waiting list for a kidney transplant, and the demand far exceeds the supply.
Currently, when kidneys from deceased persons become available for donation, they are offered to transplanted patients based primarily on how long the patients have been waiting for an organ.
While this system can be thought of as fair, "it does not strive to minimize death on the waiting list, nor maximize survival following transplant," UNOS says. In some cases, patients that receive relatively poor kidneys are likely to live many years after their transplants, and later need a second or third transplant from the already limited pool of donated organs.
Under the proposed policy, kidneys would be given a score that reflects how long the organ is likely to keep working in its new owner. People needing transplants would also be given scores — based on their age, years on dialysis and other factors — that reflect how long they are likely to benefit from the transplant.
The top 20 percent of kidneys would be offered to the top 20 percent of patients based on this score, UNOS says. The remaining 80 percent of kidneys would be allocated in much the same way as before.
Children would be prioritized to receive high-quality kidneys — those in the top 35 percent. Patients with very sensitive immune systems, who are extremely limited in the type of organ they can receive, would also have priority over those with less-sensitive immune systems.
Organs with low scores would be offered to patients in a wider geographic area than under the current system, to increase the chances that they would be used rather than discarded.
The changes could result in more than 8,000 total extra years of life, among all patients receiving a kidney in a given year, UNOS says.
However, experts say the effects of the changes will be marginal, and do not change the reality that the demands for organs is still far greater than the supply.
"It's not a major change," because it only affects 20 percent of patients, said George Annas, chair of the Department of Health Law, Bioethics & Human Rights at Boston University School of Public Health. "Obviously, it's not going to solve the shortage of organs problem," Annas said.
To address this problem, doctors need to do more to prevent kidney disease in the first place, so fewer people need transplants, Annas said.
"You can't just look at a shortage problem from the supply side, you have to look at the demand side too," Annas said.
UNOS is seeking comments from the public on the proposed changes until December, and the organization will vote on the proposal as early as June next year.
Pass it on: A new proposal could change the way that 20 percent of donated kidneys are allocated to patients.
Follow Rachael Rettner on Twitter @RachaelRettner, or MyHealthNewsDaily @MyHealth_MHND.
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MommyChick
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Me & my precious Miracle !!!

« Reply #1 on: September 22, 2012, 06:00:53 PM »

Thanks for posting! My mom was just telling me about this story an hour ago & I wanted to look it up :)
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~ Hello All, My names Marna ~

- 1995 - 12 yrs old found out my kidneys were both failing
- 1996 - Dec. 3 I received my 1st kidney transplant at age 13, after 7/mths on the waiting list
- 2005 - In Aug. transplant failed after 9.5 years, had to have a nephrectomy due to being very ill & massive hypertension
           - End of Aug. 1st time on dialysis
- 2006 - Had my fistula placed & ready to go
- 2010 - My little Miracle was born 6/mths into the pregnancy, weighing 2.4 lbs & 13.25 in long
          - Found out my PRA is 100% & I have antibodies that CAN'T be decreased
- 2013 - Oct. 2nd  *** I finally received my kidney!!! ***
          - Dec. 3rd I had 3.5 parathyroids removed, due to them interfering w/my new kidney.
Chris
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« Reply #2 on: September 22, 2012, 11:19:51 PM »

Sensitive immune systems? I am not familiar with this and do not know what they mean by this.
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
justme15
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« Reply #3 on: September 23, 2012, 12:21:09 AM »

you know, I automatically assumed it meant those with high antibodies.  but upon reading it again, I'm not really sure either what 'sensitive immune systems' means.
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cassandra
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When all else fails run in circles, shout loudly

« Reply #4 on: September 23, 2012, 02:18:19 AM »

It's a pity they didn't think of that when I was young, and healtyish. But I think its a lot better for the young D- patients of today. And maybe also for the older waitinglisters. Quite some people are going through an awful time after a transplant with a great kidney, and than die. While it could have gone to someone who could actually have benefitted, i.e. live.

But sensitive immune system? No idea
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
MightyMike
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Why do bad things always happen to good people?

« Reply #5 on: September 23, 2012, 09:35:43 AM »

Sensitive immune systems means those who are more sensitive to "non self" HLA antibodies such as myself.  I have a higher PRA meaning chance in destroying a kidney.
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"The greatest pleasure in life is doing what people say you cannot do."
   -Walter Bagehot
==========================
December 2003 diagnosed with IgA Nephropathy 80% Function.
October 2004 started In-Center Hemo Dialysis Perma-Cath 5% Function.
September 2005 Living Related Donor (Mother) Transplant.
March 2009 Diagnosed CKD and IgA Nephropathy.
August 2009 Upper Left Arm Fistula.
November 2009 started In-Center Hemo Dialysis.
December 2010 started Home Hemo Dialysis.
January 2012 went back to In-Center Hemo Dialysis.
cassandra
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When all else fails run in circles, shout loudly

« Reply #6 on: September 23, 2012, 01:00:49 PM »

sorry Mighty Mike, what are 'non self' HLA antibodies?
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
MooseMom
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« Reply #7 on: September 23, 2012, 02:36:44 PM »

I'm sure everyone wants to see the perfect kidney matched to the perfect recipient, but how to go about meeting that ideal is fraught with all sorts of obstacles.

A blog entry on the Renal Fellow Network caught my eye.  It made me realize that you could amend the UNOS rules all you want to try to ensure that the number of years of survival per kidney is maximized, but if said recipient is not particularly adherent to their immunosuppressant regime, then anything that UNOS does is moot.

http://renalfellow.blogspot.com/2012/09/medication-nonadherence-in-renal.html

I haven't heard of "sensitive immune systems", either.  I guess that's the problem with getting such nuanced information from Yahoo.com.  LOL!
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
MommyChick
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Me & my precious Miracle !!!

« Reply #8 on: September 23, 2012, 04:56:28 PM »

I'm with MM on this.. I believe the "sensitive immune system" has to do with a persons High PRA amount. I know my PRA is extremely high too!
MM- maybe we would have a better chance at winning the lottery then finding a kidney, haha  :rofl;
Good Luck!
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~ Hello All, My names Marna ~

- 1995 - 12 yrs old found out my kidneys were both failing
- 1996 - Dec. 3 I received my 1st kidney transplant at age 13, after 7/mths on the waiting list
- 2005 - In Aug. transplant failed after 9.5 years, had to have a nephrectomy due to being very ill & massive hypertension
           - End of Aug. 1st time on dialysis
- 2006 - Had my fistula placed & ready to go
- 2010 - My little Miracle was born 6/mths into the pregnancy, weighing 2.4 lbs & 13.25 in long
          - Found out my PRA is 100% & I have antibodies that CAN'T be decreased
- 2013 - Oct. 2nd  *** I finally received my kidney!!! ***
          - Dec. 3rd I had 3.5 parathyroids removed, due to them interfering w/my new kidney.
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #9 on: September 27, 2012, 12:40:28 PM »

My comment: here's a little more info on this. And there's a poll online.

Proposal to Change the Allocation of Deceased Donor Kidneys: Smart Allocation or Discrimination?
September 25, 2012 By eajkd 2 Comments

Last week the United Network for Organ Sharing (UNOS) set forth proposal 3.5 to change the allocation of deceased donor kidneys. The new proposal aims to improve transplant access to blood type B donors (longest waiting time), increase transplant access to minorities, improve transplantation rates in highly sensitized candidates, enhance sharing of kidneys between regions, and reduce the discard rate of organs. Specific policy changes to achieve these goals include allocating rare A2 blood type kidneys to blood type B recipients, awarding points on a sliding scale to sensitized patients, and allowing patients to accumulate wait time from the point they started dialysis. What has garnered the most attention however, as is summarized in a recent New York Times article, is improving the number of life-years gained from the current deceased donor pool by matching the top 20% of kidneys to the 20% of transplant candidates expected to live the longest.
Kidney quality will be determined by the KDPI (Kidney Donor Profile Index), eliminating standard criteria (SCD) and expanded criteria (ECD) definitions. Donor organs will be divided into 4 groups: KDPI ≤20%, KDPI >20% but <35%, KDPI ≥35% but ≤85%, and KDPI >85%. Organs with KDPI ≤20%, or the “best” organs, will be allocated to those recipients expected to have the longest estimated post-transplant survival (EPTS).  EPTS is based on four factors: age, length of time on dialysis, prior transplant, and diabetes status, all of which are negative factors. Higher EPTS scores are associated with lower expected patient survival. Therefore, this policy creates a disadvantage for older patients, patients with a prior transplant, those who have been on dialysis the longest, and diabetics.
So what is more important—saving more lives or being non-discriminatory? The proposed changes are estimated to result in an additional 8,380 life-years achieved annually from the current pool of deceased donors. It is difficult to argue against allocating the limited pool of kidneys to save as many lives, and for as long as possible. But at the same time, we must ask if there could be a way to still help the older diabetic patients who perhaps need a kidney even more desperately than the younger healthier candidates. Often, elderly diabetic patients do not need a kidney to last longer; rather they need a kidney faster. Evidence of this can be extracted from trials of ECD kidneys. In a 2005 study published in JAMA, it was shown that older diabetic patients enjoy a mortality benefit from accepting an ECD kidney by spending less time on the wait list, while younger healthier patients do not experience the same benefit. A recent study published by AJKD also demonstrated excellent graft survival for elderly transplant patients with ECD kidneys. Therefore, if allocating the “best” kidneys to young healthy patients, perhaps kidneys with a high KDPI should be preferentially allocated to patients with a high EPTS score; or in other words, to elderly and diabetic patients who have been waiting on dialysis the longest. This would allow them to receive exactly what they need—a kidney transplant as fast as possible.
The policy is set for public commentary from September 21to December 14, 2012. It shall be considered by the Board of Directors in June 2013. Approved or not, a heated debate on the allocation of deceased donor organs in the USA is about to ensue.
Dr. Vinay Nair
Mount Sinai School of Medicine
eAJKD Advisory Board member
Share your perspective by taking our quick poll, or leaving a comment: http://ajkdblog.org/2012/09/25/proposal-to-change-the-allocation-of-deceased-donor-kidneys-smart-allocation-or-discrimination/
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
Chris
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« Reply #10 on: September 27, 2012, 10:09:41 PM »

So how many diabetics, elderly, or what other health problems they may discriminate against end up dying due to the hands they are dealt with? Was that taken into consideration of potential lives saved versus potential deaths with these changes?
 
Just sounds like I'm screwed if I need another transplant later or anyone else who may need another transplant. When it comes to the ECD will patients be told of potential dangers of donor and be able to decline and still  wait for the next call.
 
Lots of things to think about.
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
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