Tuesday, November 04, 2003 -
TEWKSBURY Nancy Bromander spends three evenings a week hooked to a dialysis machine at Lahey Clinic.
She needs a new kidney to replace her failing pair, and her name has been on the national waiting list for 6 1/2 years. In June a kidney became available, but it didn't meet the 38-year-old's requirements for a transplant.
The disappointed Bromander has plenty of company.
This week, the national organ donor waiting list set an infamous record when the number of names exceeded 83,000.
Every 14 minutes or so, another name joins the list.
Sadly, each day 16 patients on the list die waiting for an organ transplant. About 6,200 such Americans died last year.
The problem too few donations in the face of ever-growing demand prompted a former insurance executive from Tennessee to take action, to found Life Sharers.
The basis for Life Sharers is this: Members may receive transplantable organs such as kidneys, lungs, heart, pancreas, liver, eyes and tissue if they should need them. In exchange, they must agree to donate their organs if they die and their organs are usable.
"This is all about reciprocity, doing for others what you want them to do for you," said David Undis, the founder. "What we're trying to do is encourage people to donate organs. Lots of fine organizations have been trying to get people to do this out of the goodness of their heart."
But it's apparently not enough.
People choose not to donate organs for many reasons, some of them obvious.
"It's a very unpleasant subject to think about, so people tend to put it off. Some people think it's never going to happen," Undis said. "So we're trying to give people a good reason."
Life Sharers hasn't yet had the chance to prove itself.
In its first 16 months, it has a total of about 1,620 members, with every state represented except the two Dakotas.
No members have yet died. Therefore, no one has donated or received an organ in this members-to-members program.
"And we're not rooting for anyone to die," Undis said. "We'd like to see for us to have millions of members and save millions of lives every year. The larger we get, the more valuable we'll become."
Life Sharers has come under fire, however.
Organ-donor organizations have not embraced Life Sharers. Most have taken a wait-and-see stance.
"Part of the problem is that their theory is based on an incorrect assumption that the primary reason for the shortage is that people say no to donations. But the primary reason for the shortage of organs is that very few people die in a manner suitable for donations," said Sean Fitzpatrick of the New England Organ Bank, a nonprofit agency that procures organs for transplant from hospitals in New England and Bermuda.
Some 200 New Englanders die annually with harvestable organs, yielding 600 organs.
"We're in a situation where even fewer people who are suitable donors die each year because of seat belts, air bags, motorcycle helmets, all those good things. But those safety improvements conspire against people waiting for organs," Fitzpatrick said.
Nevertheless, he said the current system, based on "altruism," works well.
"Currently in Massachusetts, 65 percent of families who have the opportunity to donate actually do donate, so you think that on the very worst day of someone's life when their child or husband died in an accident and they're offered the opportunity to save someone else's life, about 65 percent say yes, and they are not doing it for the purpose of repayment or for the purpose that maybe they'll get an organ," Fitzpatrick said.
Still, Life Sharers has stirred an important discussion, he said.
"If they are out there talking about donations, it can't be all that bad," he said.
Life Sharers splits opinion among the medical community.
"The problem is we've lost so many people waiting for organs I've lost many patients that we should do whatever we can do to increase donors. I'd grasp at anything," said Dr. Susan Black, a family practice physician in Tewksbury. "No, it doesn't sound wrong to me, doesn't sit wrong."
But the group has raised questions of ethics.
Should it take an incentive, in this case self-interest, for people to donate their organs?
Do generous people willing to donate their organs when they die deserve a place in the organ-receiving line ahead of people unwilling to part with their organs?
The big question Life Sharers may face one day is this: Suppose a Life Sharers member died and his or her organs became available, and suppose two people need that organ, one more than the other. Should it go to a Life Sharers member who needs the organ over a non-member who may, for sake of argument, need the organ more?
Undis sees no dilemma over which to agonize.
"Our members are people who are willing to donate their organs to people who are more deserving of getting them, so the question you could ask is: How can you bypass giving the organ to someone who's willing to be an organ donor and give it instead to someone who's too lazy or selfish to sign a donor card?" he said.
Life Sharers, like the national waiting list managed by the United Network for Organ Sharing in Richmond, Va., charges no fee for receiving organs. Members retain the right to donate organs to family members.
Like the national list, it won't accept organs from people with cancer, HIV infection, hepatitis and other serious ailments that make organs unusable.
Life Sharers makes applicants wait for 180 days as a way of discouraging people who are sick and immediately in need of particular organs.
In Tewksbury, Bromander, who waits for a kidney, has little moral problems with Life Sharers, though she didn't sign up. She had had a kidney transplant in 1987.
"When I had my first transplant, I waited a year and five months," she said, "but now, there are so many people on the list, and I've been waiting 6 1/2 years."
She paused and sighed when asked her prognosis.
She said, "I think it (the idea of Life Sharers) is good. People are tired of waiting."
So far, only 24 Massachusetts residents signed up for Life Sharers, which Undis called disappointing.
Eryk Boston, 32, of Chelmsford, four months ago became the first resident from the region to join.
Self-described as healthy and a nonsmoker, Boston gives blood prolifically he's closing in on the two-gallon mark. For years he has designated on his driver's license his agreement to donate his organs. It stems in equal parts from a sense of self-preservation and concern for others.
"I did not consider selfishness to be such a damning thing. But I'd rather call it self-interest. I'd support anything that gets more organs into the supply," said Boston, a former soldier and state representative candidate in the Libertarian Party who plans to pursue a law degree. "I figure if I wasn't around, I could give them to someone who could use them."
Peter Ward's e-mail address is pward@lowellsun.com .
