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Dialysis Discussion => Dialysis: News Articles => Topic started by: okarol on December 13, 2007, 11:16:28 AM
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For Religious Group,True Charity Begins On Operating Table
Sect's Kidney Donations Pose Dilemma for Doctors;
A Member's Mom Objects
By LAURA MECKLER
December 13, 2007; Page A1
WALL STREET JOURNAL
Ashwyn Falkingham wanted to donate one of his kidneys but didn't know anyone who needed one. With the help of a Web site, he met a woman in Toronto who was seeking a transplant. The two were a medical match, and he traveled from his home in Sydney, Australia, to Canada for final testing and, he hoped, for the surgery.
It's a "simple thing that can help someone," says Mr. Falkingham, now 23 years old.
But it wasn't simple, largely because Mr. Falkingham is a member of a tiny religious group calling itself the Jesus Christians. The group's 30 members, who eschew many of society's conventions, have embraced kidney donation: More than half have given a kidney.
They describe the act as a gift of love that implements Jesus's teachings. But critics, particularly parents of members, call the group a cult and charge that members are under undue influence of its charismatic leader.
In the end, the hospital in Toronto had to decide whether Mr. Falkingham's offer was a simple expression of altruism, as he had represented it to be, or an offer from a man no longer capable of independent thought, as his mother and stepfather alleged.
More than 460 people have given kidneys anonymously in the U.S. over the past decade, and many others have donated to strangers they met online, amid a huge shortage of available kidneys. Nearly 75,000 people in the U.S. are waiting for kidney transplants.
Many hospitals aren't interested in donors who don't have an established, personal relationship with the recipient. That is partly because of fears that such donors may be secretly -- and illegally -- paid. Other concerns: Stranger donors may be psychologically disturbed, unrealistically hopeful that donating a kidney will improve their own lives, or likely to back out.
The University of Minnesota has handled 42 transplants involving anonymous donors, including two Jesus Christians. Catherine Garvey, a transplant coordinator there, says neither case caused concerns. "There's definitely a religious reasoning to it," she says, "but people often quote a spiritual or religious reason."
The Jesus Christians were founded in 1982 by David McKay, a 62-year-old native of Rochester, N.Y., who moved to Australia in 1967. The Jesus Christians expect members to turn over their savings to the group and to forsake family, friends and possessions.
"We're people who have strong Christian ideals and are prepared to do outrageous things to express our love for God and others," Mr. McKay says.
Members, scattered over Australia, the U.S., England and Kenya, live communally, sometimes in campers. They scrounge in Dumpsters for wastefully discarded food. They spend their days handing out copies of "Survivors," a novel Mr. McKay wrote about events leading to the return of Jesus, and asking for money in return.
The group courts publicity. Members have cooperated with producers of TV documentaries done in Australia and England. Last year, at the Transplant Games for donors and recipients, several Jesus Christians participated, wearing red, Jesus Christian T-shirts.
Mr. McKay said he became interested in living kidney donation after watching "A Gift of Love," the 1999 movie about a high-school kid who donates a kidney to his grandmother. Mr. McKay preaches the value of donation to his group, and Mr. McKay has given a kidney himself.
Some Jesus Christians, like Susan Gianstefani, a 40-year-old mother living in London, found recipients online. She read a posting about Larry Rosenfield of Aspen, Colo., who had a genetic kidney disease, and donated a kidney to him in 2002 at the University of Wisconsin. Mr. Rosenfield later referred others who needed transplants to the Jesus Christians, and seven more transplants resulted.
"Good people are good people, and I don't care what they believe in," Mr. Rosenfield said.
Soon after Mr. Rosenfield got his kidney, Ashwyn Falkingham discovered the Jesus Christians. Then a 19-year-old student in graphic design, he was becoming disillusioned with the consumerism he saw in the advertising-related courses he was taking. Passing through the railroad station in central Sydney on his way to class one day in mid-2003, he met a Jesus Christian who was passing out books. Mr. Falkingham read the material, studied the group's Web site and began spending time with members.
He had always been close to his mother, Kate Croft. As she and his stepfather, Nick Croft, departed for a week-long vacation later that year, Mr. Falkingham promised not to join the group in their absence. But Mrs. Croft said that while she was away, she received the same email message from her son three days in a row: "What if I made a promise Jesus didn't want me to keep?"
When they returned, he had moved his things out of their house and joined the Jesus Christians. By the end of 2004 he had decided to be a donor. His first intended recipient died before the transplant could be arranged. Then, last year, Sandi Sabloff, a former sales executive from Toronto, who had suffered kidney disease for 18 years, noticed a post written by Mr. McKay on a U.S. Web site, livingdonorsonline.org13.
She had had no luck finding a living donor, and nobody in her family was a suitable match. "I kind of ran out of people" to ask, she said. She contacted Mr. McKay, who put her in touch with Mr. Falkingham.
After a phone interview with the hospital, Mr. Falkingham flew to Toronto in March. Mr. McKay accompanied him, and Mr. Falkingham said he made it clear to the hospital from the start that he was a Jesus Christian.
During the visit, Mr. Falkingham says, he met with a psychologist, a social worker and the hospital's bioethicist, who sought to discern his motives and make sure he understood the risks of the surgery. They asked whether he would receive any special status in the Jesus Christians after donating. He said he wouldn't. They asked whether he had been coerced in any way. He replied that he hadn't.
By mid-April, he and Ms. Sabloff said, the hospital had cleared him as a donor and set a date for the transplant: April 30.
Around that time, Mr. Falkingham's mother learned of his plans. She had at first accepted his decision to donate a kidney, but she and her husband developed reservations about the Jesus Christians.
Among the concerns, Mrs. Croft said her son refused to attend a family Christmas gathering without at least one other group member. And he wouldn't discuss his kidney donation plans without Mr. McKay present. "We need to hear from you and not anybody else," she said she told her son. He refused.
Mr. McKay doesn't deny that he and the Jesus Christians exerted "enormous influence" over Mr. Falkingham, but he says it wasn't improper. "Anyone who has spoken to Ash knows that he is a man of character and strong will," Mr. McKay said in an email.
When the Crofts found out in April that their adult son was planning to donate in Canada, Mr. Croft wrote to transplant programs across the country and to the health minister's office in Ontario laying out his concerns. The Jesus Christians "do publicity stunts to get attention. The kidney donation is part of this."
That same month, Toronto General Hospital put the transplant on hold. Mr. Falkingham asked his mother to write a note to the hospital saying that she believed he could make an independent decision.
Instead, she wrote the chief of the hospital's transplantation program, Gary Levy: "Ashwyn has not had the opportunity to make an independent decision since his recruitment into this group, and I do not believe he is genuinely able to do so at this time." She added: "No hospital with any concern for its integrity" should accept a Jesus Christian organ donor.
The hospital canceled the surgery and ruled out Mr. Falkingham as a donor.
Ms. Sabloff, who now needs kidney dialysis, was devastated. "I'm not saying it was that easy for the hospital," she said. "But they were more concerned about their reputation and everything else than worried about someone's life."
The hospital declined to comment on the case. In general, officials said, each donor is evaluated on a case-by-case basis, and the hospital's approval can be withdrawn.
Weeks after the decision, Mr. Falkingham said, the hospital wrote him with the official reason for rejecting him: He was motivated by the desire for publicity, it concluded, not by altruism. A news crew from the Australian Broadcasting Co. had been following Mr. Falkingham around, but the hospital had been aware of that.
Mr. Falkingham and Ms. Sabloff are now searching in the U.S. for a hospital that might be willing to perform the transplant.
Write to Laura Meckler at laura.meckler@wsj.com14
URL for this article:
http://online.wsj.com/article/SB119747536833823793.html
Hyperlinks in this Article:
(1) http://online.wsj.com/article/SB119747259790023695.html
(2) http://online.wsj.com/article/SB119747259790023695.html
(3) http://online.wsj.com/article/SB119490273908090431.html
(4) http://online.wsj.com/article/SB118901049137818211.html
(5) http://online.wsj.com/article/SB119240431698158666.html
(6) http://online.wsj.com/public/resources/documents/info-KidneyOp0709-10.html
(7) http://online.wsj.com/article/SB119239644419858530.html
(8) http://online.wsj.com/article/SB117345431796732257.html
(9) http://online.wsj.com/article/SB117012385185291935.html
(10) http://online.wsj.com/article/SB116924075025581883.html
(11) http://online.wsj.com/public/page/8_0004.html
(12) http://online.wsj.com/public/resources/documents/info-organchrtbk06-1228.html
(13) http://livingdonorsonline.org
(14) mailto:laura.meckler@wsj.com
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Fascinating. Thanks for posting this, Karol.
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It is bizarre that this little tiny group of parishioners - 30 worldwide - has such a large percentage who have donated kidneys. Most of the story is old news.
Two Jesus Christians offered Jenna kidneys during our donor search. One woman was living in Africa, so I didn't consider her, due to her location. Another was a young man about Jenna's age, which would have been great, but that was right at the time we found out that Patrice was a suitable match.
They sure get a lot of media attention wherever they go!
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I've heard of the group before, and it's great that they get so much attention focused on the need for kidney (and all organ) donors. It's so unfortunate that it has to come from a group that can easily be considered a cult that it turns a lot of people off to any issue the group might support.