Sunday, February 08, 2009

Thank you so much for all your feedback and opinions on the comment posted by “Dave.” As promised, here are my opinions and the reasons behind them.

The idea of LifeSharers – the business which was promoted in this comment section here is an American organization which effectively asks people to sign up as members of a group which wants to only donate their organs to fellow LifeSharers. Their reasoning is that this way, people who are signed up on the ODR will be prioritized, which according to them is the way it should be.

It’s a very interesting theory. Basically utilizing a principle of exclusion - “if you don’t then I won’t help you” attitude rather than leading by example.

I can see the idea behind it. The desperation which those waiting for transplant feel when thinking “if you needed this transplant you’d sure as hell be more proactive about carrying a card” but the iea and the reality are extremely different and this principle is not workable in real life.

LifeSharers claims “There is a simple way to put a big dent in the organ shortage -- give organs first to people who have agreed to donate their own organs when they die... Giving organs first to organ donors will convince more people to register as organ donors.”

This doesn’t really make any sense. The only way that would happen is if the law was changed to say that you could only receive an organ if registered as a donor. Which is not the case; this instead is a small group of already pro-organ donation people who have agreed to prioritize each other, not a national movement which will cause a shift in mentality.

The group claims “It will also make the organ allocation system fairer. People who aren't willing to share the gift of life should go to the back of the waiting list as long as there is a shortage of organs.”

Again, I do see where they are coming from. That frustration and anger definitely hit me when I was waiting; knowing that people who would shun the idea of signing up giving something like squeamishness as a reason would have the same priority as me, but that was merely a desperation to survive, fear of not making it. In reality, I feel Organ Donation has to remain a freely given gift. The minute you start attaching conditions it becomes something else.

Other than any ethical issues, the system itself is simply not workable. Emma and Jac in particular have made some great observations on this on the comments section; do have a look at all comments if you can. You might find it hard to believe that some people don’t know how to register or even understand what organ donation is, but every time I do another talk, I meet people that don’t fully understand it all, even though if they sat down and thought about it and knew what to do, they’d probably be willing to donate.

Some of the comments on this very blog have exposed myths still believed within the transplant community. Just to clear those up now: anyone can sign up as a donor – it’s up to the medical team to decide whether the organs are viable. It is not helpful not to sign up because you suspect your organs would not be useable. All the major religions support organ donation. Those infected with HIV cannot be organ donors.

Organ donation is so complex, with so many issues and questions, myths and facts, that if we cannot clearly define it how can we judge people who have not had any personal experience and assume they know enough to be signed up or to miss out?

And on a more emotional level, I just don’t like the idea of it. I find it somewhat spiteful and selfish, and completely contradictory to everything that, to me, organ donation represents; giving, selflessness, bravery, generosity…a gift.

Do keep the feedback coming if you still have opinions on this one; I find it all very interesting indeed.


Holly said...

I blogged about this exact subject two weeks ago, over on Bebo...

Was great to see you on Friday Em! Must indulge in chip butties together more often! haha! x

Unknown said...

Hi Tinypoppet:

Thanks for your thoughtful response to my comment.

LifeSharers is not a business. LifeSharers is a 501(c)(3) non-profit organization staffed by unpaid volunteers.

LifeSharers members do not want to donate their organs ONLY to other members. We want to donate our organs FIRST to other members, then to everyone else if no member needs them. We don't want our organs to go to waste.

LifeSharers doesn't utilize a principle of exclusion. LifeSharers utilizes a principle of inclusion: I will give you preferred access to my organs if you will do the same for me. And we'll both invite everyone else to join us. LifeSharers doesn't exclude anyone. We'd love nothing more than for every single person to join. Membership is free at or by calling 1-888-ORGAN88.

You wrote that it doesn't make sense that giving organs first to organ donors will convince more people to register as organ donors. The growth of LifeSharers proves the opposite. LifeSharers has over 12,000 members, and many of these were not registered organ donors before joining LifeSharers.

You wrote that the only way that giving organs first to organ donors would make sense is if the law was changed to say you could only receive an organ as registered as a donor. LifeSharers has proposed that UNOS establish two waiting lists: the 'A' list for registered organ donors and the 'B' list for others. Under our proposal, all organs would be offered first to registered organ donors on the 'A' list. People on the 'B' list would get the leftovers. If UNOS adopted our proposal, just about everyone would register as an organ donor. Thousands of lives would be saved every year.

You wrote that organ donation should remain a freely given gift. That is a lovely sentiment. I wish there were enough people out there willing to give the gift of life. Sadly, there aren't. More than half of the 100,000 people on the national transplant waiting list will die before they get a transplant, and every year Americans bury or cremate 20,000 tranplantable organs. If giving people an incentive to donate will save more lives, shouldn't we do that? Shouldn't saving the maximum number of lives be the primary goal of our organ donation system?

More education is not the answer. That's been tried for 20 years. The result is an ever-increasing organ shortage and thousands of needless deaths every year. For the sake of the people dying waiting for transplants, shouldn't we try something different?

Sarah Milne said...

Before William wason the transplant list,I was an avid supporter of he 'opt out' system. When we were listed I found the fact I was waiting for a gift rather than for somone to die very important. Since he has had his transplant, the fact that it is a gift is even more significant to us.
I don't like the sound of the LifeSharers notion. I can see why and how it would boost organ donation but I have seen children with acute liver failure that started suddenly with a virus and left them with days to live without a transplant. The thought of someone in that situation dying because they had never thought of organ donation and had never heard of LifeSharers is just unthinkable.

Education and awareness does work. There has been a lot of awareness over the last year and the unit we are in have certainly noticed the impact in the number of transplants they have done. I will be working towards raising awareness to make sure the trend continues but also to campaign for resources. The more successful transplants that are done, the more resources are needed in after care as well.
Keep up the good work Em and LLTGL
Sarah xx

Tinypoppet said...

With 12,000 members out of over 300,000,000 I'd say it very much is about exclusivity. It may well be open to everyone but it still works on the assumption that anyone who doesn't join just doesn't care enough about organ donation.

It excludes anyone who does not understand enough about it and does not trust this small clique. It excludes those who have never been forced to think about organ donation before, such as, as Sarah says, parents of a child who suddenly goes into liver failure, pretty much overnight.

You say that most members were not previously registered organ donors. I'd very much like to see proof of that.

And most overwhelmingly the fact you say education does not work shows to me just how little understanding the LifeSavers group actually have about those who are ill informed about organ donation, rather than those who were for it anyway. Instead of trying to counter ignorance, you penalise it instead, which simply leaves me cold.

It will remain in my view an unworkable solution and one created by people who don't fully comprehend the complexity of educating society about organ donation.

Anonymous said...

Dave- having run stalls with leaflets about organ donation, I think you are wrong to say education is not the answer. At every event I have been to I meet more people who know so little about organ donation pr who have never thought about it.

My instinct is to help educate these people, not to put them lower down the list if they are unfortunate enough to need a transplant.

I don't think it's about how long people have been trying to educate about organ donation, it's about how many people it has reached. It's also about encouraging families to talk because convincing one generation to sign up does not mean they will necessarily encourage their children to do the same.

I agree that we need to solve the shortage but surely the answer is to reach more people, not to start penalising people for not signing up. Even if your scheme is to benefit those who have signed up, surely you can see that that is paramount to penalising people who have not by putting them lower on the list.

As others have said, I can see how frustration might lead you to think that those who aren't willing to donate shouldn't be high priority for organs but the truth is not everyone who hasn't signed up is unwilling to donate.

Unknown said...


The organ shortage continues to get bigger and bigger despite more time, money, and effort spent on education. That's what I meant when I said more education isn't the answer. Certainly it works for some individuals, but not often enough to reduce the organ shortage. If education was the answer, the organ shortage would be going down, not going up.