Organ donors organize to share - East Valley Tribune: News

Organ donors organize to share

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Posted: Monday, December 5, 2005 5:10 am | Updated: 9:22 am, Fri Oct 7, 2011.

A small but growing national network says it’s only fair that registered organ donors be considered for organ transplants before nondonors.

LifeSharers, a network of 3,419 registered organ donors, includes 47 people in Arizona, eight in the East Valley.

Executive director David Undis founded the network in 2002.

"I kept reading stories about people dying waiting for organ transplants, and I kept reading stories about how few people had agreed to donate their organs when they die," Undis said. "It occurred to me that if you had to be a registered organ donor to be eligible for a transplant, it would fix this problem."

Undis said he did some research and found he wasn’t the first person to think of this, but he said he became the first to do something about it.

He developed LifeSharers, in which members practice directed donation. In signing up as a member they decree that their recoverable organs be offered first to other Life-Sharers members. If no Life-Sharers member is a suitable match, then the organs can be offered to the national transplant waiting list. In that way, members know other registered organ donors will have first access to their organs.

"It just seems to strike people as really fair that people willing to give their own organs should be first on the list," he said. "The people who aren’t willing to donate their organs should go to the back of the waiting list. About 70 percent of the organs transplanted in America go to people who aren’t organ donors. That’s a real good way to make sure the shortage continues."

LifeSharers currently has 22 members needing organ transplants. It has not yet had a member die in circumstances that permit organ recovery, Undis said.

Though the network is as yet untested, membership has grown 26 percent in the past 12 months. More than 360 of the group’s members are minor children enrolled by their parents. Two Arizona children have been enrolled by their parents.

East Valley members of LifeSharers live in Chandler (three), Scottsdale (three), Mesa (one) and Gilbert (one). None responded to a request for comment last week.

Sara Pace Jones, a spokeswoman for the Donor Network of Arizona, referred specific questions about LifeSharers to the United Network for Organ Sharing, (UNOS). But she did say that "the reason an organization like this would crop up is because there are not enough organ donors in the United States."

"So, really, what we need people to do, if they are committed to donation . . . is they need to make sure they’re registered to be a donor and the best way to do that is with the Arizona Donor Registry," she said. "That’s the best way we can solve the shortage here in Arizona."

Network spokeswoman Annie Moore said the organization has some concerns about LifeSharers, but does not discourage people from joining. Directed donation to a specific person is legal, and respected by the group, which manages the Organ Procurement and Transplantation Network, under which the national transplant patient waiting list is compiled.

Moore said her organization is concerned that Life-Sharers members might think they would get priority on the national transplant waiting list.

Undis said LifeSharers members designate their next of kin to ensure that their organs go to the specific Life-Sharers member in need of a transplant who is the most suitable match.

Moore said each organ has its own separate allocation policy. Many factors are considered when determining the most suitable recipient — medical urgency, location, closeness of the biological match and directed donation sometimes all come into play.

The national network does not consider whether the potential recipient is a registered organ donor.

But since the demand for organs far exceeds the supply — more than 90,000 people are on the national transplant waiting list currently and about 18 people die every day due to the lack of available organs — new strategies are being developed to increase the pool of available organs, said Jason Robert, an assistant professor of life sciences in the School of Life Sciences at Arizona State University. Robert teaches in the Bioethics, Policy, and Law program.

Robert said that the directed donation practiced by LifeSharers members could open the door "to potential problems, including queue jumping — directing donations to particular individuals allows them to move ahead of others in line — even others who have a much greater medical need for the organ."

"This is why, in general, physicians and ethicists encourage those who would be organ donors to donate their organs in an unrestricted manner," he said.

Robert said it’s too soon to tell what kind of effect Life-Sharers might have on organ distribution in America.

"Those who agree that willingness to be an organ donor should count in deciding who gets an organ should advocate for a change in the UNOS policy," he said.

Meanwhile, the group’s membership may continue to grow — LifeSharers is planning a large publicity campaign next year.

"We’re offering people a really good trade," Undis said. "You agree to give up your organs when you die and can no longer use them. In exchange, you could literally save your own life."

More online

Donor Network of Arizona

LifeSharers Web

United Network for Organ Sharing

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