news-record.com

GREENSBORO — If you're on the waiting list for a transplant, isn't it only fair that you be an organ donor yourself?

That's the thinking behind the nonprofit group LifeSharers. Its members are organ donors who specify that their donations should go first to other LifeSharers members, if one is a suitable recipient.

Christina and Mitchell Lewars of Greensboro joined about two years ago. At the time, her father was fatally ill with polycystic kidney disease. She learned that she had it as well.

"I started doing research on organ donors ... and it was just really depressing seeing the thousands of people on the lists and how long they're waiting and dying because there were no organs," Christina Lewars said.

"Through a Google search I came across (LifeSharers) and really liked what they had to say. It gives you a better chance of getting an organ."

How much better a chance is difficult to say. Since the group was founded in 2002, there has never been a transplant between LifeSharers members.

The organization claims about 11,000 members nationwide, 68 of whom are on a transplant waiting list. Membership is free.

Members receive legal documents they can fill out to make their wishes known. These documents include a wallet card, letters to family and physicians and language to add to a health-care power of attorney.

"Directed donation" — putting conditions on who can receive one's organs — is legal in all states.

The United Network for Organ Sharing, the private nonprofit that organizes organ donation in the U.S. under a contract with the federal government, recognizes LifeSharers' work in promoting organ donation. But it disagrees with LifeSharers' approach.

It "would essentially punish transplant candidates who haven't made a particular personal decision," spokeswoman Mandy Claggett said. "And while we value that particular decision, we believe the transplant system should neither reward nor punish people for their personal decisions or beliefs."

Giving preference to members of a particular group "could be regarded as the camel's nose under the tent" in returning to an unfair system of determining who gets transplants, said Nancy M.P. King, a professor in the Department of Social Sciences and Health Policy and director of the program in bioethics, health and society at Wake Forest University Baptist Medical Center.

Before kidney transplants and when opportunities for dialysis were rare, people would be chosen for dialysis based not only on medical need but also on "worthiness," determined in part by a patient's standing in the community, King said.

"The general notion of something like LifeSharers is a little troubling, as it could appear you're joining an exclusive club and you're getting a particular privilege for joining," she said.

"It really does penalize people who may have good reasons for not making that choice or who have never heard of LifeSharers. The question is, what are the criteria that ought to determine who receives an organ, all other things being equal?"

LifeSharers' executive director, David Undis, believes it's only fair to give preference to people willing to donate organs themselves.

"There's nothing else you can do with your organs," Undis says. "You can donate them and save your neighbors' lives, or you can throw them away. If you're not willing to share your organs, why should you be at the top of the transplant waiting list when you need one?"

For the Lewarses, whose daughter may be at risk of developing the same disease Christina Lewars has, the group represents at least a little bit of an edge in getting a transplant organ if they should ever need one.

"You think about it a lot and worry about where you're going to get an organ if you need it," Christina Lewars said, adding that LifeSharers "just gives you a little more hope."

Contact Lex Alexander at 373-7088 or lex. alexander@news-record.com