Published: May 08, 2007 12:54 am      

ORGAN DONATION: Donating life to club members raises questions

NIAGARA FALLS — At some point, Marlene Ford and her husband will have to depend on the kindness of strangers.

It has been three-and-a-half years since her husband Paul, 56, went into kidney failure. He has been making regular visits to the hospital for dialysis while waiting for a donor. There are no family matches.

Ford, 48, has met people who have been on dialysis for 16 years.

“The machine he is on is keeping him alive and killing him at the same time,” Ford said. “He needs to be on it to get rid of bodily fluids.”

Ford’s husband isn’t at the top of the list for a new kidney. When patients get close, Ford said the hospital gives the family a beeper so they can rush to the hospital.

So when Ford heard about LifeSharers, she and her husband decided to join. LifeSharers is a non-profit network of organ donors who promise to give fellow members first dibs on their organs to those in need. Their Web site claims those on the transplant list can improve their odds by becoming a member, which is free.

According to Upstate New York Transplant Services, more than 96,000 people are on the transplant list nationwide, 500 of whom live in Western New York. Every day 18 people who are on the list die while waiting for a transplant while one person is added every 10 minutes.

LifeSharers founder David Undis said the organization is based on the idea of members first, not members only.

“We don’t argue that organs should only go to organ donors,” Undis said. “This country has been trying to increase organ donors using only appeals for altruism. What we offer is a really good trade: You agree to donate organs after you’re dead, in exchange you may get a life-saving transplant.”

Undis said there are 47 LifeSharers members on the transplant list. If another member dies, he said those members will be first to receive the organs if they are viable. To date, the organization has not had a member die and become an organ donor.

Ford said she liked the LifeSharers concept.

“I’m not a selfish person at all,” Ford said. “I’m willing to give something up to get something. One hand washes the other. Give a little, take a little.”

It’s a theory that United Network for Organ Sharing thinks may not work. Spokeswoman Anne Paschke said when someone needs an organ, they are put on a list for deceased donor transplants. It is rare for an organ to be marked for one person; organs go to people on the list who meet the medical criteria, distance requirements and other factors.

According to the LifeSharers’ Web site, if a member dies, the highest-ranked LifeSharers member on the UNOS list is the designated recipient of the organ as long as it’s a match. The LifeSharers’ agreement and donor card both say “it is my express wish that my organs be donated first to members of the LifeSharers network, unless no LifeSharers member is a suitable match. For each part of my body donated, I designate as done that LifeSharers member who is the most suitable match as defined by the criteria in general use at the time of my death.”

Paschke said LifeSharers’ system may conflict with UNOS’s system.

“It can sound like a good idea if you don’t know how things work,” Paschke said of LifeSharers, which formed in 2002. “The system is set up to save as many lives as possible. With the liver and lung and heart, the people with the highest medical urgency get the most benefit. (LifeSharers) is like a social club. Transplantation is medicine, not a social reward.”

Paschke said potential donors should sign up with their state’s organ donation registry through www.donatelife.net, as well as tell their families about their wishes.

Niagara County has fewer than 10 LifeSharers members, but there are more than 8,500 nationwide. Ford said she has offered to campaign for the organization locally and to promote organ donation. She believes more organ donors could be found amongst the older population, people who may believe their organs aren’t viable for donation.

“I think people are just not aware,” Ford said. “They think they will do it another day. Well, for people who need organs, another day may never come.”

Contact reporter Tasha Kates at 439-9222, ext. 6241.