notinourhospitalyoudont.com
Tampa's Tribune reports today on the plight of Alex Crionas, who is being refused a direct donation from a willing donor (a friend of his) because, two years ago, Alex set up a website, http://www.SelflessAct.net to ask for someone to donate to him. Alex says that his friend - the prospective donor - was not recruited through the web site. But it isn't selling:Because Crionas had set up a Web site that was deemed to be in violation of its ethics policy, LifeLink, a Tampa- based organ transplant center, has refused to perform the living donor transplant that Crionas hoped would occur by March.What isn't clear in the story is why the web site matters if the donor does not come from that venue. The letter to Crionas reads like a disciplinary action from a high school principal:In early February, the center abruptly stopped an evaluation process to determine if 23-year-old Patrick Garrity would be a good match for Crionas.
His case had been reviewed, the letter said. ``In addition, we have reviewed your personal Web site.''The American Society of Transplant Surgeons and LifeLink are ``strongly opposed to the solicitation of organs or organ donors by recipients or their agents through Web sites,'' the letter continued.
``After careful deliberation, we will not consider any living donor for you.''
If it is in fact the case that the two didn't meet through the web site, it is really, really hard to figure out how a transplant program could arrive at the conclusion that the existence of the web site is enough to exclude any possible directed donor. In fact the decision seems pretty peculiar all the way around because the letter doesn't specify the degree to which the web site played a role in the decision. But on the other hand, this situation does raise the question of how a transplant program can disentangle claims about donor motivations when something like this web site is in evidence...
Clearly Crionas should go to Denver, where at least one hospital seems ready to consider even donors found through a web site, in that case matchingdonors.com. And maybe these guys should use their new found celebrity to form a rock group - they have the pose down.
[thanks Dave Undis]
Update: Alex writes in to the blog:
Who can say that there is more of a risk of financial compensation if the pair meets online as opposed to meeting somewhere else? The internet is simply a way to reach a larger audience, to expand one's circle of friends, among whom a donor may be found. It may be abused just as any other piece of technology that has developed faster than its regulations. That potential for abuse still does not justify denying the patient the benefit of the doubt, as it is virtually impossible to ascertain with complete assurance whether or not the donation is purely altruistic. This is why affidavits are signed. In my case, however, we did not even get to the point where we were offered that option. Thanks for the suggestion, by the way. I think we'll call the band, "The Rolling Kidney Stones".I'd give him a kidney just to see the band.
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Dear Editor,
In your recent blog regarding the Tampa Tribune story about the kidney transplant denied Alex Crionas, you state, "But on the other hand, this situation does raise the question of how a transplant program can disentangle claims about donor motivations when something like this web site is in evidence..."
Even if we had met through my website, why should the donor's motivations be called into question any more than if we had met at, say, the workplace? The internet is just as legitimate a meeting place as any other; in fact, even Robert Metzger, president of UNOS acknowledges this:
"In today's world, innovative ways of initiating friendships are continuously expanding and the internet is playing a major role in this process. Appropriate transplants have occurred between live donor/recipient pairs who have met online. Free, online chat rooms and forums exist where such donor/recipient relationships have developed."
http://www.unos.org/news/newsDetail.asp?id=391
Who can say that there is more of a risk of financial compensation if the pair meets online as opposed to meeting somewhere else? The internet is simply a way to reach a larger audience, to expand one's circle of friends, among whom a donor may be found. It may be abused just as any other piece of technology that has developed faster than its regulations. That potential for abuse still does not justify denying the patient the benefit of the doubt, as it is virtually impossible to ascertain with complete assurance whether or not the donation is purely altruistic. This is why affidavits are signed. In my case, however, we did not even get to the point where we were offered that option. Thanks for the suggestion, by the way. I think we'll call the band, "The Rolling Kidney Stones".
Best,
Alex Crionas
- by Alex Crionas on Feb 22, 2005 at 1:11 AM | link
The whole UNOS mindset needs to be changed. What can we do?
Sign This petition : http://www.petitiononline.com/48272/ .
Write your Senators, Your Congressman, Representatives! You never know if you or somone you know will be in need of an Organ Transplant!
Thanks for running this story, it gives the rest of us hope. Why do I say this? I'm one of the 87,000+ people waiting for an Organ Transplant!
- by Tetzman on Feb 23, 2005 at 8:49 PM | link