The Washington Post online via MSNBC, has a story questioning the accuracy of the numbers reported as waiting for a transplant. On the CKD discussion boards and CKD listservs this article has been met with hostility and roundly panned as factually inaccurate.
Not being on the transplant list maybe I'm missing something but the article seems about right to me. I suppose the offending paragraph is this one:
Although the need for organs far outpaces the supply, critics say the large number of inactive patients on the list may signal that potential recipients are languishing in limbo too long and that including them could mislead potential donors, recipients and policymakers about the magnitude of the need.
The first half of the sentence is a concern, "...the large number of inactive patients on the list may signal that potential recipients are languishing in limbo too long...". There is the hedge - using the word may - but I think this is a legitimate concern. I've heard a number of times from people who thought they were on the active list while they were in fact inactive for trivial reasons. The article provides the UNOS explanation - " Many patients are inactive for only short periods" and focuses on the "significant number" who have been inactive for over two years. It's not a bad thing to look into that.
That leaves the second half of the sentence, "including them could mislead potential donors, recipients and policymakers about the magnitude of the need". This doesn't make sense. I doubt whether it is 50,000 or 70,000 waiting to get a kidney makes a difference to those thinking of donating. As far as influencing policy makers, I don't think they believe we should have different policies if the list of people waiting for a kidney is 50,000 long or 70,000 long. And as far as misleading recipients, I can't come up with a scenario where the recipient's decision would be altered by the difference between one number and the other.
What I think is true is that kidney transplants are over sold by doctors (a recent example would be the recent KidneyTalk with transplant surgeon and liver recipient Dr. Woodle) and by the media. Over sold as a cure. Over sold as life saving. Rare is the kidney transplant article that does not describe the transplant as life saving ("new lease" is the same thing). It may be that this dramatic puffery is the best way to drum up donors but it also may be that acknowledging the gray areas and presenting conservative outcome expectations would increase people's confidence that they have all the information they need to make a decision.
I believe that if someone has all the information that they will donate and feel good about the decision. Not acknowledging the gray areas raises doubts and there is no need to do it. Kidney transplant - particularly living related, living unrelated, paired - is a great story. It's dramatic and important enough without being routinely described as literally life and death. To me 50,000 people waiting for a kidney, and 20,000 waiting to wait is plenty dramatic.
I am still quite upset about this article... It is totally misleading.. Maybe it's not right that some people are inactive for 2 years.. but they may have had a serious problem and are not completely ready for a transplant.. but that still doesn't change the need.. they make it seem like inactive people are "baggage" I agree if they just keep them on the list knowing they are not going to be eligible.. then those people should not be on it.. but what difference does it make?! whether the number is 50,000 or 90,000 .. these people have set the whole organ need cause wayy back..
I wish these people were on our side of the issue.. I want them to feel and see how agonizing the whole thing is.. It makes me upset that people will take this and think "I don't want to give my organs because the system isn't fair" .. personally I do not understand what difference does this make?.. this whole article was just a "hype" thing.. It's like they couldn't find anything better to write about... what about talking about the heprin situation?
I just hope that people know better than take this stuff for real..
But again... maybe I'm taking it this personally because I'm on the other side of it and have a "biased" opinion.
Posted by: Mishy | March 22, 2008 at 06:27 PM
I don't think asking for the program to be described in exact and transparent terms - so that the meaning of the numbers are correctly understood by all - will set the rate of donation back. Mishy, I think you're right that this bit of news doesn’t help, but if people don't have confidence in the program or the numbers is that the fault of the people, the program, or the messenger? I don't think it's the messenger or the people's fault.
And after reading Micheal's take I think that if the numbers do matter to someone they should be given numbers that are exact and transparent. They might not matter to you or me but they do matter; they should mean what people think they mean.
The article could have explored the impact further. I think it is the wait times that drive agressive donation campaigns and appeals, not the size of the list.
The larger question is how aggressive of an approach should should we take in appealing for living donation? For cadaveric donation? How many additional donors would there be under an opt out system? How many more donors would there be if lost wages and/or transportation expenses were reimbursed?
Posted by: Bill Peckham | March 22, 2008 at 07:05 PM
maybe you're are right Mr.Peckham.. number mean alot.. But they have no concept of the inactive status.. They are judging something they do not understand.. if they complained about how many people are on the list and not enough donors and maybe try to put the same impact..just in a more positive light..like talking about the realities of organ harvesting.. the idea that people think that a doctor will kill someone for their body parts.. but they chose to go in a negative direction.. they decided to make the our side "guilty" ..they chose it focus on something they do not understand.
Even if I can understand the whole inaccurate number thing..there are still thousands of people waiting for organs. and fact is we are still always short.. and people still die. For these people to write about how "unfair" it is..I'm sorry.. but It's unfair for someone having to go and endure hours of dialysis.. in pain. It's all unfair.. but for them to point out this small 'unfairness" is just plain mean. There are far more unfair things to worry about..
.. I am still a little hurt by the article..it hits to close to home..
Posted by: Mishy | March 23, 2008 at 06:14 PM