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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

Wall Street Journal/December 13, 2007

By Laura Meckler

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.org.

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.

Excerpts: Organ Rejection

Ashwyn Falkingham, a member of a small religious group called the Jesus Christians, wanted to give one of his kidneys to Sandi Sabloff. Initially, Toronto General Hospital approved the transplant but later called it off. What follows are excerpts of writings from the main characters involved, plus selected questions and answers from a WSJ interview with David McKay, leader of the Jesus Christians.

Email from Kate Croft, Ashwyn Falkingham's mother, to Dr. Gary Levy, medical director of the multi-organ transplant program at Toronto General Hospital, upon request of her son:

Subject: For the Attention of the Living Donor Assessment Team

Date: Wed, 30 May 2007 20:30:40 +1000

From: Kate Croft

Dear Dr Levy,

My son Ashwyn has asked me to write to the hospital stating whether I believe he is capable of an independent decision. From what I've observed since he joined the Jesus Christian community over three and a half years ago now, this would be most unlikely. A possible decision may be put forward for consideration by any member, however the community must reach a consensus for any proposal to be acted on, and that process is very clearly guided and controlled by the leader, David McKay. This situation applies to all issues, from the smallest to the largest, whether it may be to arrange a meeting with friends or family for a cup of tea or a meal; moving to live in another country, or donating an organ.

In my experience, 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.

I believe that 75% or more [actually, it is closer to 50%] of the current members of this community have donated kidneys since Dave put forward the idea that altruistic organ donation is a worthy Christian activity. I believe that like those before him, Ashwyn is being coerced into conforming through mind control techniques, as well as the pressure of positive peer group re-inforcement techniques from the ever-growing number of successful donors within the group. I do not believe he would have made his decision to become a living donor were he not a member of this community.

It is also my understanding that all donations from members of this community with the possible exception of one, have been used to gain media attention and publicity for David and his followers. In all conscience, and with great regret, I can only state that in my view no hospital with any concern for its integrity should accept the offer of an organ donation from any member of this community in its current structure.

I am prepared and willing to discuss this matter further if required.

Sincerely,

Kate Croft

Letter to Ashwyn Falkingham from Toronto General Hospital:

June 27, 2007

Please find enclosed a copy of your hospital chart from UHN.

I understand that you have also requested written reason for the Hospital's decision not to proceed to accept your offer to donate one of your kidneys to a specific potential recipient.

Our transplant team and program are leaders in their field. They are often the first to try a new procedure or to offer a new service. In fact, we believe that there is likely no other Canadian health centre with a transplant program who would have seriously considered your offer, as we did.

Ultimately, I accepted the recommendation of the Executive Committee of the Multi-Organ Transplant Program that it was not appropriate to proceed. The major determinant was that we were unable to rule out the possibility that there was valuable consideration, in the form of publicity, associated with the donation. The benefit of publicity as a possible motivation for the donation is of significant concern as a matter of law, public policy and scientific standards.

We will soon be responding separately to your request for a copy of

Dr. Collins' report.

Sincerely,

Robert S. Bell, MDCM MSc FACS, FRCSC

President and Chief Executive Officer

University Health Network

Posting from Ashwyn Falkingham on Internet bulletin board on living donor issues, www.livingdonorsonline.org

[Note that the hospital's official reason for ruling out Mr. Falkingham as a donor was that he was being motivated by publicity; A crew from the Australian Broadcasting Co. was planning to follow him as he went through the procedure.]

Date: June 13, 2007

Subject: Ash's Anatomy

Hey,

Ash here. I was completely open and honest with [Toronto General Hospital] from the start about everything from the fact that I am a "Jesus Christian," to the fact that I eat from [trash] bins. They even knew from the start that there was this one ABC documentary following my progress in this donation.

They initially approved me to donate knowing all of this, and it was only after my parents complained to the hospital, and someone in 'a position of responsibility' (the hospital's words) decided that they needed to do further psychological testing, that they then revoked their earlier approval.

That irresponsibility in itself (rejecting the operation after having initially approved it) is cause for concern. But what was equally disappointing is that they eventually said that they had cleared me of any suspicion of undue influence (remember this is supposedly the only reason they initially rescinded their official approval) and the reason they would not go ahead with the operation was because of concerns of 'excessive' publicity.

Both my recipient and myself questioned them as to what this excessive publicity was, and were told that it had something to do with the documentary that they had known about from the start.

It was hardly excessive, they had agreed to it at the beginning of the whole thing, and they had only given one condition -- that it not air until after the operation. This agreement had not in any way been breached.

What resulted after they rejected the operation could possibly be called excessive publicity, but it only resulted because they were too afraid of some empty threats of bad publicity from my parents.

Posting on Livingdonorsonline, from Sandi Sabloff, the woman who was to receive Mr. Falkingham's kidney.

Date: June 2, 2007

Subject: From Intended Recipient of J.C. Kidney at Toronto

I am truly devastated and heartbroken that Toronto General has banned this altruistic donation, particularly since the hospital had approved the operation and sent me a letter confirming the operation date. They cancelled the surgery a week and a half after the approval, giving no explanation. Subsequently in a meeting - we were told that the upper administration in the hospital felt that Ash was under undue influence to donate. This, we believe, was due to some nepharious, vindictive pretend do-gooder with no conscience.

The hospital was obliged to check into any allegations and did so through the services of a forensic psychiatrist -. They could no longer claim undue influence. THE OFFICIAL REASON GIVEN WAS EXCESSIVE PUBLICITY (OF WHICH THEY WANTED NO PART-SO THEY SAID). THEY ALSO CLAIMED SUCH PUBLICITY HAS A VALUE ATTACHED TO IT SO SOMEONE WAS BENEFITTING -.

The bottom line, I believe, is that hospital is very worried about negative publicity especially in relation to the Jesus Christians.

The situation had turned into not only a farce but a nightmare - We had told them from the start that Ash was a Jesus Christian and that there was media interest. They have wasted our time, our money, our energy. They have created untold stress and anxiety and I am back to ground zero, feeling pretty hopeless and upset -

The Hospital's agenda - seemed to be a low key, simple, no fuss process, The Jesus Christians/ABC's agenda - was to have a media event celebrating live donation. I was sandwiched between these two opposing forces when all I wanted was a kidney to give me life. The Jesus Christians and ABC still got their media attention. The hospital maneuvered its way out of what they perceived as an awkward situation that could blemish their reputation.

Let us just say that their operations were a success but the patient may die.

Sandi

Posting to Livingdonorsonline from David McKay, leader of the Jesus Christians

Date: Aug. 7, 2007

Subject: Media as Payment-Toronto General

Ash finally got the official in-writing explanation from Toronto General Hospital last week for why they called off his donation to Sandi after Ash's parents made threats (apparently to go to the media) if the hospital went ahead with Ash's donation.

They said that they called it off because Ash was being compensated for the donation via media coverage! Seriously!

Talk about the pot calling the kettle black. Toronto General knew almost from the start that there would be media coverage, and they were as keen as we were to have the ABC do something positive about organ donations. But when it looked like the media coverage could turn nasty (which I am confident it would NOT have been, if the hospital had simply done the right thing and told Ash's parents where to go), then the hospital put its own obsession on dollars and cents onto Ash.

It was fine if media coverage could generate more money for them by portraying them as a progressive hospital pioneering international Internet-related organ donations. But when it looked like Ash's parents could put a blemish on their nice image, then they decided to make Ash the scapegoat. After releasing press statements that gave the impression that Ash had been refused because he was either a health risk, a nut case, or getting paid for what he was doing, the truth finally comes out (after MONTHS of delay, so they could be sure that the media would have lost interest by now), that they called it off because of THEIR obsession with what they could get out of the media, even though the official claim is that they were worried about what ASH was getting from the media.

What disgusting hypocrisy!

Posting to Livingdonorsonline from another Jesus Christian, Jayme Kronmiller, who would like to donate a kidney:

Date: Oct. 7, 2007

Subject: Wanting to donate, but don't want to hide my views

Hi, My name is Jayme, and I am a member of the Jesus Christians - I live here in the U.S. My blood type is B+, and I would like to donate a kidney to someone here in the U.S. if they can find a hospital that will accept a kidney from a Jesus Christian. My identical twin brother donated earlier this year at the Mayo Clinic in Rochester, Minnesota, but he had to hide the fact that he is a Jesus Christian in order to do it. [The Mayo Clinic says it will consider all potential donors, including Jesus Christians.] I had considered doing the same thing, but I feel that this is just giving in to the religious bigotry that is behind such a policy. If there really is something wrong with me, it should be stated and proven through some other means than my religious affiliation.

I have two other friends (also Jesus Christians), one living in Australia, and one living in England. I think their blood types are B and O. They, too, would like to donate a kidney if they could find a hospital that would accept their kidneys. They are both willing to come to the U.S. to donate. One of them (Ash) wasted several months trying to donate through Toronto General Hospital in Canada, only to be rejected by the hospital administration at the last minute because they were afraid of the general public hearing that they had accepted a kidney from a Jesus Christian. So he wants a hospital that will START with a statement that they will not be prejudiced against him because of his religion, and they will not refuse him after he passes all of the tests, even if religious bigots threaten to mount a campaign against the hospital for accepting a kidney from a Jesus Christian.

If you, or someone you know, would like to have a kidney from any one of us, please send me a PM or an email, and we will get back to you. Please understand that we are definitely not seeking payment, and we are doing this because of our Christian faith and concern for people suffering from kidney disease. There is no requirement in our community for anyone to donate a kidney, but we have been inspired by the stories we have heard from other members of our community who have donated.

In hopes of helping,

Jayme

Excerpts of email reply to Wall Street Journal questions to David McKay:

Q: How do you reply to Ash's parents' allegation that your group donates kidneys as part of a grand publicity stunt?

A: We have never made a secret of the fact that we believe the media is a powerful tool for education. We have tried to generate awareness of the need for more living organ donors, and our efforts have resulted in changes to legislation, both in Australia and in the United Kingdom, making it easier for live, unrelated donors to help people suffering from end-stage kidney disease. We intend to keep on using the media to raise awareness as well. The fact that so much of the media has tried to use our donations as a way to condemn organ donations has not stopped the message from getting through that people can and should be doing more to help those suffering from EKD. Ha, if nothing else, we can inspire people to donate so that those suffering from kidney disease will not be forced to stoop so low as to accept a kidney from a Jesus Christian!

Q: How do you reply to their allegation that their son was unable to make an independent decision on donation -- not because you were making him do it overtly, but because of enormous influence you and the group have over its members?

A: We have never denied that we have enormous influence, just as parents have enormous influence over their children. The real issue is not whether one has influence, but rather whether they have used that influence ethically. Every possible test has shown that those Jesus Christians who have presented themselves as donors have all been prepared mentally, psychologically, practically, and spiritually for what they have done. But to say that their son was not able to make an independent decision is an insult and an affront to their own son, and it has seriously alienated them from him. Anyone who has spoken to Ash knows that he is a man of character and strong will. I know, because I have gone through the agony of trying to get him to watch the Simpsons when he wanted to watch a documentary on freeganism while we were sharing that room in Toronto!

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