Under kidney transplant proposal, younger patients would get the best organs

[MooseMom]

This really is the most depressing topic.

[cariad]

Oh. My God. Just typed a response to MM and lost it. Going to have a good cry now. Will try to work up energy to respond later.

That's OK.  Don't waste your time and energy!  The whole "let's start selling kidneys" thing is off topic, and I apologize for that.  That's not in the proposal we should be focusing on.

I think I am guilty of letting the media guide my thinking.  It's pretty easy to condence a 40 paged document and reduce it to a scary soundbite.  The whole idea is not to deprive older people of kidneys but, rather, to better match the kidneys that come available like the doc said in the above-linked video.  The woman who had been waiting 15 years said that she'd rather her children have a kidney if they needed one, but of course any mother would say that.  She might not be so accomodating if the kidney she had been waiting 15 years for went to a child she didn't know.

Fifteen years...what a deeply depressing thought.  And that woman is in Chicago.  So am I.  I'm doomed.

I've had a couple of thoughts and wonder what the rest of you think.  Certain IHD members, myself included, bang on about "optimal dialysis" and how standard dialysis as practiced in the US in and of itself can CAUSE enough cardiovascular damage to a patient as to make him eventually unhealthy enough to stay on the waiting list, thus dooming him to a life on dialysis forever.  If we really want to be fair, we need to start BEFORE the patient gets to the waiting list; we should make sure that all patients are given dialysis in such a way that does not threaten their chances for a transplant.  I know that some people are just too sick to make it that long on dialysis, but there are so many others who are kept alive by violent dialysis sessions but are also damaged with each treatment.  Change the way dialysis is delivered, and more people won't die while awaiting transplantation.

The other thing that just struck me is the issue of multiple shots at transplantation.  If someone judges that you are too old for a transplant because you've "lived your life" and now it is time to give someone else a chance, then does the same rationale hold true if you've already had one transplant and now it is time to give someone else a chance too?  I'm waiting for just ONE chance while others have already had one, two or even three transplants.  As more people are stricken with ESRD, more people are transplanted, which means more kidneys end up going to more people who have already had a transplant and the rest of those who are waiting for just ONE go are pushed further and further down the queue.  I can't imagine the stress that would come if you knew that once you've had your transplant, you're done, so good luck, but on the other hand, I am now feeling the stress of what it might feel like if someone decides that being 53 means you're screwed.  I've skimmed the proposal and can't offhand find any reference to how they propose to change how they deal with people who have already been transplanted but have had the graft fail, but if someone else has read it and can explain this, I'd be grateful.  Again, someone has to make a value judgment and play God.

I am really confused. Sorry, but did some people just start commenting without reading the article? This has nothing to do with any sort of death panel. As MM said, it is NOT there. I would like to hear people's thoughts on the actual proposal.

Why should it matter how many transplants you've had already? Most of the time, it is out of the person's control how long the transplant lasts - it depends on how you tolerate the drugs, what condition you have that led to renal failure at the start, financial situation, the strength of the match, living or deceased donor, etc. Innovations in transplant and drug therapies, which were not around when I was a child, have allowed people to keep transplants longer. Under that system, people like me, monrein, Chris, and anyone else who saw their kidneys fail at a young age would clearly be discriminated against. And don't tell me that is what this proposal is doing. If, heaven forbid, my kidney fails at age 70, I will queue up with everyone else and accept my 55 to 85 year old kidney. Or I'll just take my chances with dialysis. Or I'll get one of the new medical technologies and marvel that we ever worried about this.

By the way, responding to MMs earlier post, I have always said I want to see socialized medicine in America. The poor are discriminated against in our medical system every day. You should not have to be wealthy to have good health. So I see no contradiction in my distaste for selling organs. Then again, it sounds to me like we agree anyhow. However, I don't see that reimbursement and tax breaks (which already exist) are going to increase the donor pool. Opt out would. Cash markets would create an underclass, with brokers operating similar to pimps. It's all selling bodies when you want to make a buck. I also don't get the paranoia toward opt-out but some of those people want to see cash for organs?? If the potential for fraud were just about money, I wouldn't like it but it wouldn't bother me as much. Paying living people for organs opens up a world of exploitation possibilities. That's the condensed version of what I wanted to say.

MM, you stated that we shouldn't look at odds of future lifespan based on age, well then you cannot do that with a kidney, either. There will be times that the 65 year old kidney will outlast the 25 year old one. Either you believe in that calculus or you don't, and if you do, I think the proposal makes sense, if you don't, then why be bothered by it? The older person will get the better kidney on plenty of occasions!

Sugarlump, being denied a kidney transplant is not necessarily a death sentence as many people here have proved. Under this proposal, you would be offered first crack at kidneys between the ages of 35 and 65, with the range going up a year with your age. It is not like your kidneys are great at 35 and suddenly turn into a gopping mess at 36. People in their 50s would do fine under this proposal. Transplant is not a panacea. I cannot stress this enough. Yes, I have done well with it, others have seen their lives destroyed or died from it. Summary of the woman who had Harvard's first stem cell/kidney transplant: transplanted at 12, in a wheelchair by 18, taken off rejection drugs that were killing her, rejected the kidney. Refusing to give someone a transplant, while in my opinion still awful, is not condemning anyone to die. (OK, there may be rare instances....)

Does anyone have any criticisms of the proposal? I am interested to hear if I am missing something. I am not exactly young, and I think this proposal would work.

[MooseMom]

I would Faaaaar rather see an "opt out" system than a system whereby you can sell a kidney, and I think there should be a much bigger push in that direction.  But whenever an opt out system is proposed, people start yelling about how the government shouldn't make us do anything, blahblahblah, and I don't think Americans will EVER accept this.  Does anyone know if any individual state has an opt out system?  Maybe if we tackle this on a state level, some small progress might be made.

Why should it matter how many transplants you've already had?  Well, it shouldn't, but again, we are talking about scarce resources (cadaveric kidneys).  It shouldn't matter if you are young or old or live in Chicago or live in Wyoming, but it does.  The average waiting time for a kidney in Chicago is 6 years, and in Wyoming, it is six months, and the proposal is attempting to address that discrepancy.  If you are happy to get an EC kidney for your second or third or fourth transplant, that might be fine with you but it might not be with another patient.  Who gets to decide what is fair?  If you are 40 years old and need a second transplant, should you be automatically shifted to the EC list because you've already had one transplant? I don't know...I'm just musing.  But I have to admit that I wonder how one person can get more than one kidney while this poor woman has been waiting 15 years.  Of course, it's a moot point if that second kidney is directed to the patient from his/her donor, but is it fair that one person gets more than one cadaveric kidney while others are waiting 10-15 years, people who also have no control over their disease?  What a horrible thing to have to decide.

And yes, you are right in saying that a 65 year old cadaveric kidney might work longer than one that is half that age.  The proposal also addresses that point.

I think the proposal would work well enough, but it still doesn't address the central issue which is lack of organs.  However, I am not sure I like any proposal that favours any one group over any other.  And I don't like being viewed as a statistic and nothing more by people whose kidneys aren't failing.  But that is part of having a chronic illness, I guess; you're just swept away by the views and practices of people with better health and more power, and your life ceases to be under a modicum of your control, and your treatment is dictated by money and big industry and by people who think they are so marvellously wise that they have the right to decide if you are deserving of anything at all.

(Cariad, in my previous post, I was just commenting on the video from the link provided by Hazmat.  No one was talking about death panels.  Sorry if I confused anyone.)

[cariad]

MM, I'm just confused in general, so please don't take it personally! No one's fault.

I really don't get how this proposal favours one group over another, except pediatric patients and from a former pediatric patient who made it out alive, those kids need to be given special consideration. Dialysis is much harder on children, it stops their development. It may sound extreme to compare an 85 year old to a child, but my life experience is such that I *was* that child at one point, and in the article the man was 85. We cannot pretend that there is not some difference between these two populations. What 85 year old really thinks they should be given the kidney of a 30 year old? It doesn't make sense. I definitely see the postcode lottery that you mention. The wealthy are favoured, but what else is new in America? With hospitals having varying wait times, the wealthy can afford to go to the shortest wait, the working class probably won't be able to do that. Steve Jobs worked that system, and he gets more time now. I don't understand how people are not matched by medical status. You cannot even get on the list if there is some issue with that, at least not usually. Are they saying they would mindlessly transplant a 20-year-olds organs into a 65-year-old?? Sorry, but that is lunacy. Also, with HepC patients, they already will only offer them kidneys from other Hep C patients, at least that's what I've heard from people. It may not seem fair, but maybe HepC is one the most unfair things in the world, and unfair things are sadly part of life. Was it fair that I lost my kidneys before anyone knew what they were doing? Do I spend a lot of time raging against events that cannot be changed and that all turned out all right in the end? (Probably not and definitely not, respectively.)

I really don't see the correlation between people who have had transplants before and age matching in allocation. It is not a privilege to get a kidney as a child, it is a medical emergency and a full-on horror show. Does anyone who knows anything about transplant really think "Oh, that organ hog, she's on her fourth transplant and she's only 30!"? I think most people would think how awful it is that someone would need to go through so much so young. It really doesn't matter if someone else wouldn't want an EC kidney, if they are in their 70s, perhaps it is time to admit to oneself that a kidney around your own age would be a pretty fair offer. EC can be just a label - perhaps it will last for 20 years, no one can tell. They still have that shot, and they will likely get the call much earlier than if they insisted on a pristine kidney. At 70, I imagine my position would be get me off dialysis as soon as possible, and I will make the most of the transplant. I don't know why 70 year olds would consider it discrimination to not be offered a 19-year-olds kidney. I don't get it. I wouldn't be offered one either under this system, but that's fine. I would want that kidney to go to a four-year-old. I really would.

Hope I don't sound angry. I'm not. I am just trying to understand what the issue is, how this is unfair to older people? 

[MooseMom]

No one is suggesting that children no longer should be favoured.  They are favoured now, and no one is suggesting that should be changed, and no one is suggesting that it is a good use of a 12 year old kidney to be given to an 85 year old instead of to a 12 year old.

The proposal will pass and everything will be wonderful.  Nothing in life is fair, so I applaud the efforts of anyone who tries to make it so.  There will be winners and losers in this, as in any protocol that changes, and people will live and die just like they did yesterday and today, and nothing much will really change.

[okarol]

As a friend of mine said, the article that should be written is "Kidneys Rapidly Going to Disproportionately More and More Older Recipients, Trend Worsening Unless Checked!" but that's the truth, and the media doesn't find that titillating enough.

[WishIKnew]

So true!  I shared the article on my FB page and ALL of the responses I got were anti- Health Care Reform comments.  Obviously, my friends read the title and not the article and jumped right where the media wanted them to - "See, death panels are here!"     Bolderdash!!!!!

I like your friends headline - much more accurate!

I LOVE using the little animations, by the way!

[cariad]

Thanks, Karol. An important point to keep in mind.

I will try to read the proposal and comment before the deadline. I suspect that it will all be a waste of time, though. I think there will be such huge medical advancements that by the time they were to implement these changes, we'll be well on our way to saying "Who needs cadaveric donation anymore? There's a better way!" Fingers crossed.

[MooseMom]

I will try to read the proposal and comment before the deadline. I suspect that it will all be a waste of time, though. I think there will be such huge medical advancements that by the time they were to implement these changes, we'll be well on our way to saying "Who needs cadaveric donation anymore? There's a better way!" Fingers crossed.

That's what I'm hoping!!  Technology moves faster than bureaucracy!

[Katonsdad]

I have a question,

Is the old system broken ?   It seems to have worked so far . Why fix what works or God forbid is theis the start of
the Obama care revolution ? 

When dining out the ask for your name to be put on the list , not how hungry you are .

When giving out food at a food bank do they say well , you are older so you dont need as much ?

They leave well enough alone.  I will take the time to read the full measure and being in Richmond they will
be able to heaqr me !

BECAUSE I AM KATONSDAD

[MooseMom]

KATONSDAD, the new proposal has been in the works for at least 6 years, so it doesn't have anything to do with Obama, nor did it have anything to do with ex-President Bush.

http://optn.transplant.hrsa.gov/kars.asp

You can follow this link for answers to your question.  From there, you can follow another link to the actual document, the beginning of which is pretty good about explaining why they are looking to refine the allocation policy.

The system isn't broken, per se, but with more and more people on the waiting list, it is felt that the age of the donor organ should more closely match the age of the recipient.  But this is a simplistic explanation.  For more info, do read the document.  It's quite interesting.

[Katonsdad]

The information that is being piut out there is scaring a lot of people ......Along with family members.
If a person is 60 or 70 ,whatever age they have just as much of a "right" to treatment as the next person.

Seems the Kidney professionals are looking for a way to say , nope your to old for this

Below is there wording on how to submit a comment ,,,,,Notice the prefer email with a document attachment
or fax .  They do not want to see faces.,   They want a Plain piece of paper looking back at them not a face.
Makes them feel better that way .

Sorry for the RANT but this subject hits to close to home

How to Submit Feedback
The preferred method for submission is by e-mail to kidneypolicy@unos.org. Attachments are permitted in the following formats only: .pdf, .doc, .txt. Please note, e-mail addresses will not be shared with Committee members; only information contained in the subject line and body of the e-mail will be shared. Please do not include identifying information in the e-mail subject line, body or attachments as this information will not be removed prior to review.
For those without internet access, responses may be faxed to 804-782-4896 (attention: Kidney Transplantation Committee Liaison), or mailed to:
Attention: Kidney Transplantation Committee Liaison
United Network for Organ Sharing
700 N 4th Street
Richmond, VA 23219

[wj13us]

I've read it, well most of it scanned the rest.

I'm for it.  If I'm reading it right the main focus is to improve the longevity of a transplant by doing better matching.  And, statistically at least, there will be an increase in the average longevity of a transplant.  With a scarce commodity this is a welcome development.

So the unemotional, engineer in me says yes its a good thing.

The emotional also agrees.  Yes it does favor children.  But what kind of society would we be if we didn't put our children first?  Especially our sick children.  The way I look at it if I'm on a sinking boat and not enough room on the life boats for everyone,  there is no way I'd be on one of those life boats if there were still children on the ship.

For someone who seen it from both sides. A child who needed a transplant of most likely will need another at an older age.  The new system gives me a great deal of comfort.  Under the present system I'm not so sure I would go on the list since I would not want to deny child the chance I had.  But how can I be sure that a child would get the kidney I did not?  With the new system I'm more assured.

Bill

[KarenInWA]

I am more for this than against this.  I actually brought this up to the transplant surgeon during my eval appointment.  Come to find out this topic is his baby, and he has worked extensively on it.  He told me how much it killed him to have to put in a 16 yr old cadaver kidney into an 80+ yr old patient, who was next on the list.  He fought it, but lost in the end.  I think it is an absolute waste to give such a precious gift to someone who is that old.  I think doing that is a slap in the face to the donor's family, who I can only assume would want their son/daughter's organs to go to someone younger and who will be able to use them for as long as possible.  I think it is only fair to try and age match when it makes sense.  Younger patients should get younger kidneys, to lessen the chance that they'll need additional transplants sooner as their lives go on.  In the end, it works out better for all of us who need to spend time on the list.  Yes, I know that younger patients tend to be careless with taking their meds, that is also something this same surgeon talked about.  I don't know the answer to that.  But giving a young, healthy kidney to someone who is elderly and has already lived life just isn't right, no matter what way you look at it.  That's my 

KarenInWA

[Henry P Snicklesnorter]

.

[rsudock]

Moosemom and Cariad I love reading your responses! Glad we can voice our opinions and not feel like someone will attack us if we do...I will finish reading this and post later!

xo,
R

[cariad]

I don't follow what you're saying, Katsonsdad. This hits close to home for almost all of us here. There is nothing in the proposal that says that people over a certain age have no right to a transplant. No idea what Obama could possibly have to do with this and not sure why you brought him up except as an excuse to bash him.

Could people please read the article and comments at a minimum before they post? MM has read the proposal, so at the very least I would read her comments because she mentions what is and what is not in the proposal.

Karen, a 16-year-old kidney going to someone in their 80s? That should upset all of us. It looks bad for donation as well. That kidney could last someone 30-40 years, if not longer. Why would they do that? It sounds like this proposal is long overdue but I will certainly be back to post if I find anything worrying in it.

[MooseMom]

The proposal is well thought out though it IS long; still, it is not that complicated although there are a lot of numbers, percentages and graphs. 

When you read it, keep in mind several things;

1.  This is not an attempt to do away with the waiting list entirely.

2.  This IS and attempt to better match a donor kidney with an appropriate recipient.

3.  Very young patients still have priority.

4.  The emphasis is more on examining the merits of the kidney itself, not so much the donor as hyped.  It is not about giving more kidneys to younger patients, rather, it is about giving better kidneys to healthier patients who would expect to get the most years out of it.  Ironically, if it so happens that in any given year, there are more older donor kidneys available, then more older recipients would get them.  Hypothetically, if this year most of the cadaveric kidneys through some weird happenstance came from donors aged 45-60, then recipients aged 30-75 would get those kidneys (using the =/- 15 year template explained in the proposal).  In this instance, 20-25 year old patients would lose out even if they had been on the waitiing list a bit longer.

The proposal explains that only 20% of available cadaveric kidneys meet the "pristine" designation (my word, not theirs) that would go to younger patients. 

Age is not the only criterion by which these decisions will be made.  Overall health of the recipient is also considered (ie, their "diabetic status") along with other criteria.  But again, the emphasis is on the health of the donated organ.  Once that health status has been determined (and the proposal explains this as the KDPI, I think it is called...pretty sure that's it...you'll see it in the document because they bang on a long time about it!), then the allocation process really begins.

[Sugarlump]

This topic has made me think long and hard not just about my current situation but about the whole kidney donation thing as well, that I decided to do a bit of research and see how the UK list is currently managed.
As far as I can tell,
Young patients (0-19) are already given priority and some priority to younger adults (20-25).
Patients over the age of 65 are at some disadvantage from this weighting BUT there is no official upper age limit.
First priority is tissue match.
Second priority is youngest recipient
Third priority is longest time on dialysis
The agreed criteria is that the transplant has to have a likely success rate for two years minimum.
The best tissue match will always carry the highest weighting because this has the greatest chance of success and graft life.

I'm not sure there ever should be defined age limits/ or restrictions on numbers of transplants. Everyone's situation is personal and different.
Only a doctor who knows the individual patient can asess how fit the patient is and how likely a success a transplant would be.
Basic statistics never reveal the things that make the real difference, how sick the patient is already, how likely they are to comply with medication (still the most common reason for graft failure) and the health of each kidney transplanted.

From personal experience, I don't think you could ever limit someone to 1 transplant as circumstances beyond their control could cause the
kidney to fail pretty quickly. In my case, 3 months (of which 2 spent recovering from transplant) would be pretty cruel. If my current (second) transplant does fail I would think seriously before going back on the list but would want this to be a discussion between me and my doc, not some man in a suit in an office that had never met me. I don't know if my current transplant was a marginal organ, I do know it was from a 60 year old and that it was a near perfect match. A gift I accepted as a chance of a better life and hope it succeeds. If I ever get the chance to donate any of my organs, I don't really mind who gets them, to help anybody rather than take them to heaven will be just fine with me.

Recent improvements in keeping transplants functioning/ better drug regimes can only help the situation where numbers on the list far outweighs the number of kidneys available. Although the number of people on UK kidney transplant list actually fell last year for the first time.

[MooseMom]

I agree there shouldn't be an age/number of tx limit.  A 40 year old may have multiple co-morbidities while a 60 year old may be far healthier.

I think the biggest difference between what happens in the UK and what the new proposal here outlines is the way the donor organ is evaluated.  Tissue match is just one criterion.  Condition of the ORGAN would be the main determinant, not necessarily the age of the recipient.  If the next donor organ to become available was 45 years old, if the recipient at the top of the list was only 25 years old but the second placed recipient was 50, the older recipient would get the organ because the condition of the organ would probably most closely match the condition and life expectancy of the 50 year old (assuming all other things were equal).

Interesting to hear what happens in the UK and important for you to know!  Thanks for posting that.

[lawphi]

I am in favor of strong preferences for young adults, especially for primary transplants.  We are talking an additional point or two if the donor is within 15 years of the recipient.   It won't really matter unless there is a three way HLA tie for the kidneys in that particular region or center. 

Doesn't UNOS "track" high quality kidneys and give points to a network that is paying in more organs to help them receive the same quality?

I also think the developments in living donor exchanges will decrease the dependence on cadaver kidneys for the younger population.  My husband's parents were ABO incompatible and there was not an option to trade in 1995.

[Sugarlump]

In the UK they do not disclose the quality of the transplant organ which means you might be fighting to save an organ that has little hope of winning the battle though also knowing you have a marginal kidney might make it even more stressful.

[mogee]

There are people who do not deserve an organ transplant.  Specifically, anyone who would insist on taking their own organs to the grave should not be eligible for a transplant.  The Israelis got this one right.  They are currently asking all Israelis to register as organ donors by a specific date (I believe it is sometime in 2012).  Those who fail to register are ineligible for an organ transplant.  If someone registers subsequently they are then required to wait a prescribed period of years before they are eligible.

It is time that we recognized, in some meaningful way, that refusing to be an organ donor results in hardship and death.  If an individual will not let his or her organs be used to save lives, he or she is undeserving of being saved.

[paris]

I have such mixed emotions.  Of course, I want the younger ones to get transplants and live long productive lifes.   But, no one wants to look death in the face and know time is limited.  The first 4 years on the list, I didn't sign up for extended criteria.  But, the reality of my situation made me know that was the better chance for me.    August 31, 2010 was a very long day -- from 7:30 am until 10pm waiting and waiting. I knew there were 5 of us in the ER being evaluted - all hard to match patients.  I also knew that one was a lady in her late 20's.  It wasn't hard to figure out who was there for the transplant.  I said from the beginning  - I hope it is hers. She needs it more than me.  But, it all just doesn't work out that simply.  It will always come down to the match.  Me, with 100% PRA, was a match.  I was told it was from a donor with high blood pressure, so I knew it wasn't perfect, but it was perfect for me.  Many here know how much I dealt with guilt.   It will be interesting in 5 - 10 years to see how this actually pans out.   What is the proposal for those who need a second or third transplant? Obviously, the patient would be older by then, so would they eventually not be eligable?  Oh, what an emotional subject this is.     

[okarol]

Luckily there are living donors or this would be an even bigger nightmare.