LIFESHARERS UNFAIR — UNWISE


 

This is my shortest blog ever.

 

Being as April is National Donate Life Month, I decided to re-visit my views on LifeSharers (www.LifeSharers.org).  Upon doing so I determined that I can neither support nor be a member of a group that is exclusive rather than inclusive. 

 

Yesterday I sent an email to LifeSharers Founder Dave Undis informing him of my decision and withdrawing my membership.  ,While I do not approve of the UNOS/OPTN approach, the LifeSharers concept is worse.  It is discriminatory and will punish innocent people on the waiting list whose only crime is that they did not take the time to become organ donors.  Frankly, I believe LifeSharers could cause the unnecessary death of a non-donor if it ever affects a transplant from a donor to a donor.  The end simply does not justify the means.

 

 

One of the keys to my decision was this one question and answer from the FAQ section (http://www.lifesharers.com/faq.asp) on the LifeSharers Website:  

 

Q. Shouldn’t organs go first to the people who need them most and have been waiting longest?

A. No.  Organs should go first to the people who have agreed to donate their own organs when they die.  This increases the number of organ donors, and that saves lives.  As LifeSharers increases the supply of organs everyone benefits, even non-members.  Besides, it’s a myth that organs are now given first to the people who need them most or have been waiting longest.  Some of the people who need organs most can’t even get on the waiting list because they can’t afford to pay for a transplant.  Many who have been on the waiting list a long time are removed from the list because they’re considered too sick to get a transplant. 

 

(Since writing this blog, LifeSharers has removed the “No” from their response.)

 

I cannot imagine being so uncaring as to say the neediest person should not be offered the organ first.  How cold!  How utterly inhumane.  That hard and immediate NO answer sent shudders up and down my spine.  That, NO is, to me, the height of arrogance and will result in a death sentence for some poor, end stage sufferer who neither cares about nor is involved in the politics of organ donation.  Worse yet, Dave Undis wrote the question and the answer.  I only reprinted it. 

 

UNOS has some serious questions about the ethics of the LifeSharers concept and I cannot believe that just because a few donor-to-donor transplants might take place that UNOS will suddenly find the practice not only ethical but also desirable and adopt it as the nation’s organ donation and transplantation policy as LifeSharers suggests it will.  That will happen about the same time the Shia and Sunni quit fighting, embrace Israel as their dearest friend and get together for a group hug.  In short, it’s a pipedream. 

 

 

Life — Pass It On.  If you are not an organ donor, become one today.  Don’t take your organs to the grave, they could save or improve many lives.  And — you will get a bit of immortality.

 

 

 

PEACE; from a grateful, no strings attached, heart recipient

 

Posted on April 3, 2008, in LifeSharers. Bookmark the permalink. 20 Comments.

  1. Thanks for replying to my post, Mr. Aronson. I am still trying to get at the root of the moral/ethical problem you have with the model, however.

    Since it’s true that lifesharers do donate to a specific person at the time their organs become available, then what you object to is the criteria by which someone chooses that specific person. You seem to reason that since there are some very needy people on the transplant list, we must be very careful when deciding who to donate to. If that’s correct, then what I’m curious about is by what criteria you think it’s okay to forsake the neediest person on the list.

    You imply it’s okay to donate to a specific relative or friend but don’t say why. Why do you allow an ethical escape clause for people who donate to family and friends? You cannot escape the fact that by doing so, someone else who has a much greater need is going to die. Why are you unwilling to characterize such a choice as elitist? Has such a donor, in effect, said “No” to the sickest person on the waitlist? If you’re going to carry the banner for those who are sickest, why not come out and accuse those who give to friends as being cold hearted? The simple reason is because it’s an untenable position in a free society. Your position against lifesharers is equally untenable.

    You claim lifesharers is elitist because it “automatically” eliminates people who didn’t know about organ donation. Your use of the word automatic here is misleading. There’s nothing automatic about it. Lifesharers have deliberated and made a conscious choice to donate to a specific person: someone like themselves who believes in the importance of organ donation. It is this deliberate choice that puts a lifesharer in the same moral category as the person who made a conscious choice to give to a relative or friend. Both donors have made a deliberate choice to benefit someone they share a bond with over someone else they do not, even if the someone else is closer to death.

    The bond that unites lifesharer donors is their shared belief in the importance of organ donation. If our friends are people who we share like values with, then lifesharers are but a group of friends who have agreed that, should the going get rough, they will look after one another. It’s your prerogative to call this model elitist, but then you should also step up to the plate and condemn any willing donor who fails to give his or her organs to anyone but the sickest among us.

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    • I do not intend to get into an argument over LifeSharers. I have better things to do with my time but let me respond to your last comment. In case you don’t know, I am a heart transplant recipient. I know what it feels like to be dying and hoping you’ll get a donor. Dave Undis does not.

      Lifesharers has not saved one single life so far, not one so don’t be fooled by the hyperbole offered by Mr. Undis. Secondly they may never save a life and here’s why For LifeSharers to grow large enough to have any effect every American would have to join — every one! When was the last time you heard of everyone joining anything? Besides, at their current rate of growth, about 2 to 3,000 members a year, it would take 500 years for LifeSharers to get a million members. But give them the benefit of the doubt. Maybe they can grow by 4,000 members a year. Then it will only take them 250 years to get to a million. There are 300 million people in the U.S.

      Like Mr. Undis I disagree with the manner in which UNOS has handled donantion and transplantation but for the time being it is what we have. the best thing a person can do is sign up to be a donor and get all their friends to do the same. The more donors the less likely it is anyone will die. this is a life and death issue and we don’t need Lifesharers type discrimination getting in the way.

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  2. I don’t see the difference in choosing to give an organ to my sister or choosing to give an organ to a stranger I’ve chosen. Of course, if I give an organ to my sister, someone needier on the waitlist might die. Does that make me an elitist? Cold hearted? Worse, did I cause an unnecessary death? Of course not. Anyone with any sense of human rights realizes that my organs are mine to donate to whomever I wish. I see no difference if I wish to give my organs to someone on the lifesharers list out of respect for their choice and sacrifice to become an organ donor.

    I respect Mr. Aronson’s choice to give his organs to whoever needs them first. But to berate someone just because they feel strongly about giving to a fellow donor is little more than grandstanding and name calling.

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    • I do not object to donation directed to a specific person, most certainly that is your right. I object to the concept of donating only to other organ donors. While the objective sounds good, it is in effect elitist because it automatically eliminates people who didn’t know about donation. If the LifeSharers notion were to be accepted (which it isn’t) the neediest would have to take a back seat to those who are members. LifeSharers founder Dave Undis gave a direct “no” answer to the question, “Shouldn’t sickest patients get first dibs on organs. that, My friend is cold hearted, elitist and wrong!

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  3. Of course if more people would volunteer to be organ donors then we would not have a problem of not enough organs to go around. Perfectly good organs get cremated and buried every day. I don’t need an organ. I hope I never do. Lifesharers is a good idea. If such an organization causes just one more person to give and that saves just one more life, then it’s worth it. I’ve been an organ donor as far back as I can remember. If we were smarter as a society then we would all be opted in unless there was written directives otherwise. Then think of the lives that could be saved.

    And yes. I’d rather my organs go to someone who is willing to be an organ donor themselves. If it wasn’t important enough for the most critical person to think of before they needed an organ then they can wait in line for mine and be eligible after those who have said, “yes. I’ll donate my organs.” Even as a child I expressed my wishes to my guardians. As an adult I have always expressed my wishes to those around me. I figure the more who know then the better the chances my wishes will be followed and the less chance of someone holding out and screwing it up.

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  4. Bob, you said “people who simply did not take the time to become organ donors”. We all know that when you get your drivers license you are handed a little card with like 3 lines and asked if you will be an organ donor. It isn’t about the time, it is simply ” will you donate or not” and at that time those people are thinking “yuck, no!” so they don’t sign up and then if they one day find themselves in need they are forever grateful to the altruistic of our soceity and in awe of them and hopefully that changes their lives as well. I think you are minimizing the thought process that does go into people saying “no ” to organ donation. My 5 yr old son needs a heart transplant and I haven’t yet decided what to think of lifesharers but I caught your defense of people who don’t sign up. Were you one before your heart transplant? Just curious……

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  5. I may be a bit confused… but isn’t this challenging cross-referencing you refer to similar (read: the same ) to what UNOS would be doing anyway? Any LifeSharer who needed an organ, would already be on the UNOS list, wouldn’t they? I mean, how else would you know a member needed an organ? Hmmm… I mean, does LifeSharers keep track of every one of their members organ needs, so that if a LifeSharer died in a way that their organs could be donated, their family member would contact LifeSharers, and they’d be… what… faxed a copy of every LifeSharer who needed an organ? Whether they could be on the list or not?!!

    I am a bit concerned about how it all works out, and plan to ask some questions myself, but assuming that the above bit isn’t true, I am assuming you wouldn’t just get a list of LifeSharers’ members who are on the UNOS lists, and it would be up to you to decide which of those individuals should get your loved ones organ(s). Who would want THAT repsonsibility, especially at such a tragic time?!! I am assuming you would work with the UNOS coordinator, to match up a LifeSharer’s member and the official UNOS list. I would think most people would pick the LifeSharers whom are closest to the top, in their individual need. If that were the case, it wouldn’t take that much extra time, I’d think. However, since they’ve not yet had a LifeSharer die who could donate their organs, so they haven’t in effect, ‘tested the system’ yet, I’m not sure, even if they have a good answer for me at this point, whether it would be valid or not.

    I’ll have to send them an email and see what their answer is…

    (Actually, just re-read their information on their site, and… well, read at the end…)

    I would like to say tho’, that I do think the idea itself is a good one, and even if not ‘everyone’ joined, but the movement took off, there’d be so many more organs for donation, and maybe eventually nobody would have to die, waiting for an organ. Because one thing ol’ Bob is wrong about… the agreement says you agree to give your organs to a LifeSharers member FIRST, but if one can’t be found, then definitely it would go to the next person on the list. As the membership grows, the chances of a LifeSharers member needing an organ will likely be less, so it would go to the next person on the list. And so on, and so on, and so on…

    After re-reading the information on LifeSharers’ site, I realize that the agreement is that: “the highest-ranked qualified LifeSharers member (if any) on the UNOS match run is the designated donee of that organ if that person is a suitable match.” So it taking all kinds of time seems to be a little mis-leading, isn’t it? The whole point of a UNOS match run is that the people on that match run are the ones who best match that organ already. As to best medical match, UNOS has to do this in each case anyway. Just because someone is at the top of the list for say… a heart… and they are on the UNOS match run for a donor heart, UNOS would still have to check out if they are still a good medical match. Things can change in a matter of hours…

    So, if I’m understanding it correctly, if a LifeSharers member dies, their family member calls LifeSharers, gets a list of members who need organs (they are on the UNOS list), gives it to the representative of the local organ procurement organization, with the instructions that the highest ranking LifeSharers member should get each organ. And that, if one can’t be found for any organs, they are to go to the person at the top of that particular list.

    Sounds pretty simple, and not overly time-consuming… not any more than usual organ donation can be… A lot goes on behind the scenes…

    Won’t it be interesting… the first time a LifeSharers member does die in such a way their organs can be donated… and if it gets out in the media…. I’m sure there will be people having all kinds of opinions on it…

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  6. Jen — the problem is, the LifeSharers system delays (if not prevents) the actual organ donation from happening. When someone dies in such a way that organ donation is possible (and only 2% of us do), there is a very limited amount of time to obtain consent (if the donor didn’t already sign the state’s donor registry), test the blood for diseases and matching purposes, contact potential transplant recipients, arrange for several surgical teams to travel to the donor’s hospital and do the surgery.

    If the family wants to direct an organ or two to someone they know waiting for a transplant, that’s a great opportunity for them. IF, however, the family wants to donate to “someone on the LifeSharers list”, that would involve a lot of challenging cross-referencing to see if any are a medical match, and if so which one is the best medical match for that particular donor.

    As an aside, there are a lot of people who THINK they’ve properly signed up as an organ donor in their state, but don’t have the right information about how to actually do so. And there are millions more who did sign up through the official methods for their state — typically a donor registry or through the DMV. I sure don’t think it’s ethical for LifeSharers to penalize them by putting them to the back of the recipient list. Luckily, LifeSharers has no such authority.

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  7. We’ll have to agree to disagree. I’ve been a member for a long time and I’ve never heard a word about Dave’s EGO. You are making it personal and it needn’t be.

    I don’t think everyone will join, no. But what if a large # of people did – say, a million? Same result, in my opinion. More organs.

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  8. Jen:

    I am sure that you, like most of the LifeSharers members are sincere in your belief that you will help someone. LifeSharers, though, is not the way. Think about it. You say that if everyone joined there would be plenty of organs to go around. In the history of the world., how often has “everybody” joined anything. And that’s the point, unless everyone does join LifeSharers, which will never happen, people will die because the LifeSharers approach is not fair. In Dave Undis own words, people who are in the greatest need or who have been on the list longest SHOULD NOT GET ORGANS FIRST. A lifeSharers member should. I doubt, Jen, that you would want anyone to die for Dave Undis’s ego.

    If you thinkk logically about getting EVERYONE to join LifeSharers you will know it is impossible. There are 300 million people in the U.S. LifeSharers has grown at the rate of about 2,000 members a year for the last six years. At that rate it will take 500 years for the organization to get a million members. I rest my case.

    Become and organ donor, put it on your drivers licence, tell your family and work to get others to do the same. Forget Undis. His concept is fatally flawed and when I say fatally I mean it. Some is going to die because of LifeSharers. Maybe several someones.

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  9. The whole point of Lifesharers (in my opinion and why I joined) is that if EVERYONE joined, there would be plenty of donor organs to go around. That is the goal. If you and others put that goal down, disparage it, and don’t understand it, then YOU are the ones holding people back from joining and creating a larger pool of donors.

    We are going to die. It’s our choice whether to leave something behind to help the living. Lifesharers helps spread the message that we need to all join together to help each other.

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  10. Response to Jeff Reichert:

    Polls show 90% of Americans support organ donation. But only 50% have bothered to register as organ donors. So it’s clear that the problem is not lack of understanding.

    Public education and appeals to our better nature have been going on for 20 years. Every year the organ shortage grows, which proves that puclic education and appeals to our better nature are not the solution to the problem. If 99% of the public would do the right thing, there would be no organ shortage. Lots of people need another good reason to donate. LifeSharers gives people that reason — a chance to save their own lives by donating their organs after they die.

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  11. I’ve heard too many people say that they didn’t know a thing about donation until they were either faced with an illness or the death of a loved one. LifeSharers is deceptive because it assumes that everyone knows about donation and that some just choose to not register. Baloney.

    Don’t sentence to death those who are ill and who hadn’t registered because they didn’t know anything about donation; rather appeal to people’s better nature, provide public education and 99% of the public will do the right thing and register.

    We have a lot of work to do.

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  12. LifeSharers has accomplished nothing! At the current rate of growth it will take 250 years to get to a half million. A lot of noise, but no motion.

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  13. LifeSharers has accomplished nothing? It’s true that we haven’t arranged any transplants yet, but we’ve recruited thousands of organ donors.

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  14. I stand by my blog. To this point LifeSharers has accomplished nothing. Most of its claims are speculative and there is no reason to believe it will change anything. Change is necessary but we need positive change, not change that could cause deaths in the process. LifeSharers is a bad idea.

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  15. A question for Jeff Richert: what is deceptive about LifeSharers? If we’re doing or saying anything deceptive I’d like to fix it.

    Dave Undis
    LifeSharers

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  16. LifeSharers is not exclusive. Nothing could be less exclusive. We welcome everyone, we turn away no one. Membership is free. We devote a lot of time, money, and effort to recruit new members. We’d love nothing more than for everyone in the United States to join.

    LifeSharers is not worse than the UNOS/OPTN approach. Under that approach, more than half of the people who need transplants die waiting for one. About 8,000 people die each year under the UNOS/OPTN approach. By increasing the number of registered organ donors, LifeSharers will result in more transplants and fewer deaths.

    LifeSharers is not discriminatory. Everyone is welcome to join. Membership is free.

    LifeSharers does not punish people on the transplant waiting list. They’re all welcome to join LifeSharers.

    If it is cold, uncaring, inhumane, and arrogant to not give an organ to the person who needs it the most, then the UNOS/OPTN system is cold, uncaring, inhumane, and arrogant because that system doesn’t give organs to the people who need them most. Location, ability to pay, age, and time spent waiting often trump medical need.

    If it is cold, uncaring, inhumane, and arrogant to not give an organ to the person who needs it the most, then how would you describe people who are willing to receive an organ transplant but are unwilling to register as an organ donor? Those people receive about half of all the organs transplanted in the United States.

    The bottom line is simple – if you allocate organs first to registered organ donors you get more registered organ donors and you save more lives. Saving the maximum number of lives should be the pre-eminent goal of the transplant system. If anyone thinks the system should have a different goal, please describe what that goal should be and why it’s a better goal than saving the most lives.

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  17. Glad to read you have reconsidered on LifeSharers Bob. I was wondering what you where thinking. But it goes to show how difficult it can be to really understand the full ramifications of what Mr. Undis is proposing. Not good and definately deceptive. We need more sick people to recieve the gift, not less as he proposes. Keep up the good work.

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  18. Bob,
    This is a very clear response to the LifeSharers’ proposal. While the need for transplant continues to grow we see more ideas come forward on how to help those waiting recipients. Unfortunately LifeSharers is simply the wrong proposal. We will continue to work towards encouraging more people to say yes to donation and thank you for your ongoing help in this endeavor. People should go to http://www.donatelife.net to learn how to register in their state and share those wishes with their family. Doing so provides hope to thousands.
    Susan Mau Larson
    LifeSource

    Like

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