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February 18, 2005

'Transplant Denied'

0217kdn2

That's the headline over today's Tampa Tribune story by Susan Hemmingway Johnson on LifeLink, a Tampa-based organ transplant center, and its refusal to transplant a kidney because the recipient advertised online for a donor — even though the eventual match was obtained from a friend who had absolutely nothing to do with the online effort.

Unbelievable, that these incidents keep occurring: don't the organ transplant groups realize that not only will they have to recant and go ahead with the transplant once public word gets out and outrage builds, but that they'll lose even more ground in their fight to retain their hegemony and teetering empire?

Attorneys and corporations know how to play this game so much better: they settle the case, then seal the files.

That keeps the hounds from baying at their doors for years, sometimes decades.

But hubris, especially the brand sported by physicians, is simply too great a force to overcome, I guess.

I have written here before about the coming end of the super–secretive organ transplant empire: specifically, for those who care to read further, in "BehindTheMedspeak" features on:

• October 21, 2004

• October 27, 2004

• November 8, 2004

• November 9, 2004

• November 20, 2004

• December 17, 2004

• December 26, 2004

Simply click on "All Archives" to the right, find the day you want, and there you are.

This is the first installment of 2005 to address the transplant uproar — and I guarantee you it won't be the last.

Anyway, here's the opening salvo in what promises to be an exciting battle down Tampa way — even though the outcome is already known.

    Transplant Denied

    Alex Crionas (right, above) wanted his plea for a new kidney to go around the world.

    He was determined to save his life and unwilling to wait any longer on a list of more than 60,000 Americans who need kidney transplants.

    Because of a disease that destroyed his kidneys, Crionas required dialysis treatments three times a week.

    The four–hour sessions were keeping him alive, but they were brutal.

    He was only 27.

    Somewhere, he believed, there was a benevolent stranger who had his same type O blood.

    His theory: Maybe a stranger would be willing to become a living donor, if he — or she — knew how badly Crionas needed a kidney and how miserable his life was.

    The stranger could make Crionas healthy again by having one kidney removed and giving it to him.

    The gift had to be free.

    Paying for organs is illegal.

    In 2003, Crionas set up a Web site (www.SelflessAct.net) bearing the motto "You only need one."

    As the only child of chronically ill parents, he couldn't expect a kidney from his family.

    The Web site would widen his chances, he believed, making his story available to anyone with computer access.

    He put up a graphic day-in-the-life essay that described his dialysis and information about organ donation.

    The site attracted e-mail but no donor.

    It also may have killed his chances to receive the kidney from a friend he met the old-fashioned way — in person, through mutual friends.

    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.

    In early February, the center abruptly stopped an evaluation process to determine if 23-year-old Patrick Garrity (left, above) would be a good match for Crionas.

    Crionas and Garrity met last year near Orlando, where they both live.

    The pair have known each other about four months.

    Garrity, a stand-up comic and Army National Guardsman, explains his generosity this way: Friends become like family.

    "I'd do anything for my friends,'' says Garrity, who drove with Crionas to Tampa in January to begin testing at LifeLink.

    The first tests looked promising, the men were told.

    But then LifeLink stopped returning their calls.

    In a brief letter dated Feb. 4 and signed by LifeLink medical director Victor Bowers, Crionas learned why.

    His case had been reviewed, the letter said. "In addition, we have reviewed your personal Web site."

    The American Society of Transplant Surgeons

    Amsoctransplsurg_2

    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."

    Crionas was stunned by the decision.

    "I was dumbfounded... I'm, like, are you serious?"

    The LifeLink letter said he could be put back on the national list to wait for a "deceased" kidney of someone who had made provisions to be an organ donor upon death.

    But Crionas, now 28, fears that wait might be as long as five to 10 years, due to factors such as his age and blood type.

    Most of the 87,000 people on national waiting lists for organ transplants are waiting for kidneys.

    Like Crionas, hundreds of others seeking organ transplants have decided to quit relying solely on the nation's organ distribution system to find them hearts, lungs and kidneys.

    They have set up Web sites and bought advertising space on billboards to make direct pleas for organ donors.

    The system — put in place through the 1984 National Organ Transplant Act — may not be ready for them.

    In November, after the first kidney transplant involving people who met through a Web site,

    Matchingdonors_4

    www.MatchingDonors.com, the transplant surgeons' society issued a statement against personal or commercial Web sites that solicit organs.

    The surgeons group urged centers not to accept patients who found living donors through Web sites.

    Meanwhile, Robert Metzger, president of the United Network for Organ Sharing (UNOS),

    Unos_1

    which oversees the nation's transplant centers, acknowledged in a January memo to the organization's board of directors that the Internet can be like any community gathering place.

    People meet online in chat rooms or through message boards, Metzger said.

    The challenge for organ transplant centers is figuring out what is or isn't appropriate.

    Easy access to the Internet — unforeseen two decades ago when the Organ Transplant Act was created — is making possible sites such as www.EveretNeedsALiver.com, www.MyDaddyNeedsALiver.com and www.SaveOurSonny.com .

    The sites have worked for some.

    Last year, a Houston man who had liver cancer started a Web site and bought a billboard in his quest for a replacement liver.

    He got one within days when a sympathetic family directed that the liver of their recently deceased relative go to him.

    The commercial site www.MatchingDonors.com produced its first successful match last October.

    It charges people in need of transplants up to $295 per month to post their stories and photographs, in hopes of finding a "personal connection" with potential donors who can cruise the site for free.

    In New York, two women recently created Links for Life, an organ donation campaign (www.LinksForLifeCampaign.com), after starting www.DonationForCynthia.com last July, in hopes of finding a kidney for a 25-year-old niece.

    They offer services at no charge to people who need help starting their own sites.

    So far, more than 20 people have signed up, and all are linked to each other's sites in an effort to raise their visibility, says founder Irma Woodard.

    Everet Barrington, a 47-year-old man who lives near San Antonio, Texas, became a member of Links For Life last fall.

    Hepatitis C, contracted from a blood transfusion after a car accident, has destroyed his liver, and he needs a new one.

    For nearly five years, he has been on the national waiting list for a liver.

    He wears a pager to alert him in case one became available.

    The pager has never gone off.

    "I wake up and watch my wife and daughter cry," Barrington says about why he started EveretNeedsALiver.com through Links For Life.

    He prints out every e-mail.

    They've filled two boxes so far.

    He hears mostly from well-wishers.

    He has yet to find a donor.

    Some have called from Asia or Africa to offer their livers in exchange for sponsorship to move to the United States.

    "They don't realize they can't live without a liver," Barrington says, although living donors are sometimes able to donate sections of their livers because the organ regenerates.

    The possibility of money or compensation being exchanged is what makes some doctors leery.

    "That can be an issue when a living donor donates," says Richard J. Howard, a transplant surgeon at Shands Hospital in Gainesville and president of the transplant surgeons society.

    "This has happened in the past... Donors come back and say, 'I gave you that kidney and now my mother needs an operation,' or 'I can't make a payment on my car,'" Howard says.

    Another problem is that organs might go to those in need based on their compelling stories or appearance, he added, which would be unfair to others on waiting lists.

    Howard and his colleagues have considered how far the personal pleas might go.

    "We were talking about this, and someone said, 'Can you see this as a TV reality show? Three patients are allowed to present their stories and the audience votes on who gets a kidney,'" Howard says.

    At LifeLink in Tampa, medical director Bowers feels so strongly about the issue that he puts asking for organs on a personal Web site in the same category as buying or selling them.

    Both are "inappropriate," he says.

    There are no laws against the personal or commercial Web sites that seek altruistic organ donors.

    The 1984 National Organ Transplant Act forbids commercial transactions for people's organs.

    Last week, Bowers declined to talk about Crionas' case.

    But, in general, "I just think it's wrong," he says of personal Web sites.

    "It undermines the whole basis of our current system... I think if someone actively solicits, whether it would be through a Web site, a TV advertisement or billboard, that is not appropriate."

    Crionas, who is disabled and on Medicaid, says he would have taken down his site if he had known that it could jeopardize the gift of a kidney from Garrity.

    The issue hadn't come up earlier when Crionas had another donor lined up for an operation that was supposed to take place through LifeLink in December or January.

    A friend from North Carolina who he had known for years backed out of a promise to give him her kidney.

    That's when Garrity volunteered to take her place.

    Crionas says he remembers mentioning his Web site in passing during a psychological screening at LifeLink.

    He isn't sure what to do now.

    But he may apply to other transplant centers.

    Each is able to make its own policies, and another center might be willing to consider the issue of personal Web sites on a case-by-case basis.

    Meanwhile, the national waiting list isn't an acceptable option because it is restricted to the organs of kidney donors who have died, he says.

    Crionas believes his chances of a successful outcome will be greater if he receives the kidney of a living donor such as Garrity.

    Plus, he can't endure the wait — and a poor quality of life — until it becomes his turn on the national list, he says.

    "There's no way that I'm waiting 10 years."

Reporter Susan Hemmingway Johnson can be reached at 813-259-7951; email: shjohnson@tampatrib.com

[via David J. Undis, Executive Director,

Lifesharers

LifeSharers.com]

February 18, 2005 at 02:01 PM | Permalink


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Comments

living donor


Liver Donation

donate kidney or a piece of my liver
I am 35 years old and completely healthy.
I come from germany
My blood type is AB+ and my last such antibody test was negative.
interested? Visit: http://livingdonor.6x.to/ or
please send me an e-mail at: newlife5@web.de

Posted by: donator | Mar 10, 2009 8:36:30 AM

I am an attorney with 28 years of litigation experience. Lifelink has no moral to make judgments and deny life to a young man. My sister in law died last saturday and personnel from LifeLink started calling her sisters on the phone. The first two that they called told them in no uncertain terms that they would not approve of it. Finally the got one of the sisters who did approve (there are five of them). So with the opposition of most of her sisters LifeLink went ahead with the procedure. They took everything from her (bones, skin, heart, etc.) and left her body so mutilated that it was necessary to hire someone to try to make her look like a human being for the service. They mortuary did a good job but the body did not actually look like her. These people are merely vultures without morals, they did the procedure even when the deceased had never volunteered for it and with full knowledge that almost all her sisters opposed it. On top of that they treated the body with no respect either to the deceased or to her family. I would never be an organ donor nor do I advise it to anyone.

Posted by: Hector Diaz-Olmo | Jun 22, 2006 8:16:07 PM

i what to donate a kidney.my blod tpe is AB4.if you are intersted...please reply me to my email adress:transplant_kidney@yahoo.com

Posted by: gianini | Sep 14, 2005 6:24:50 PM

Yes, we need donors, but we also need a system to plug them into UNOS waiting list. A donor doesn't know the process to donate an organ because NKF, American Society of Transplant Surgeons, and hospitals like Life-Link don't educate the public on living unrelated donation, only on cadaveric donation. I see a future, where people donate organs like they would donate blood. We need to change people's attitudes towards donation and we better do it quick before the UNOS and the transplant hospitals make the web out to be the bad guy and it scares away all donors.

Lou Lamoureux
kidney transplant 9/25/00
http://www.cycling-videos.com/blogger.html
US Transplant Games 2002,2004
World Transplant Games 2003

Posted by: Lou Lamoureux | Feb 23, 2005 12:41:28 PM

It's pretty easy to snipe at the "system" from afar but it's not a system problem, it's a math problem.

For the record, we don't need UNOS or matchingdonor.com, we need donors. If you're healthy and have 2 kidneys, you can walk into any kidney transplant center in the United States and donate one of your kidneys, in an anonymous and altruistic manner. Right now. No internet access or bureaucracy necessary.

Of course then you wouldn't get to choose for yourself who was worthy enough to receive your generous gift, but you can't have everything.

I think at last count we need around 60,000 of them, a pretty small number in relation to the population. If you want to get rid of the debate (and UNOS) altogether, that's the way to do it. They're all well-credentialed folks, I'm sure they wouldn't mind finding something else to do. I know I wouldn't. Everybody get in line.

Maybe we could start a website to replace all those self-righteous fat-salaried slackers in those bureaucracy laden NGO's who haven't solved world hunger yet too. All you need to do is get some food and feed them, what's so hard?

Sorry to be argumentative, but it's not as easy as you make it out to be.

Posted by: Mike | Feb 21, 2005 8:56:07 PM

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