Houstonians (And Others) Angle Their Way Up The Organ-Donation Queue
LifeSharers, a budding network of more than 12,600 people across the country, including 70 or so in Houston, was founded on a single, seemingly simple premise: that people who agree to donate their organs after death should receive priority if they ever need one.
Members get first the first crack at each other's organs.
Sasha Albertini, an IT worker in Houston, joined LifeSharers in 2004, thinking it the right thing to do.
"I'm not one of those people who's terribly attached to my body after I no longer need it," she says. "I still have good stuff, and, frankly, I would hate to see it go to waste."
She has since lost a kidney to a massive infection. Now she takes comfort in her slightly better odds of receiving a transplant if the other one goes. She calls the network "a leg up."
David Undis, a retired insurance professional from Tennessee who started LifeSharers in 2002, says even the smallest edge can mean the difference between life and death. There are currently 78,000 people on the kidney waiting list, and, in general, death is more likely than a transplant.
Surveys vary, but no more than half of adults in the United States are believed to be organ donors. Of them, even fewer can actually donate. Less than 1 percent of U.S. deaths -- between 15,000 and 20,000 -- occur in conditions that are conducive to donation (someone needs to be brain-dead first, usually from a car accident or stroke). There were about 8,000 deceased donations last year.
"I was just appalled at the terrible waste," Undis says. "You've got all these people dying waiting for organ transplants, and you've got all their neighbors throwing away the organs that could save their lives."
One-third of LifeSharers members were not organ donors until they signed up.
Undis wants his concept implemented on a national level by the United Network for Organ Sharing, which manages the waiting lists and has a heavy hand on transplant policy. He believes the number of organ donors would skyrocket as people scrambled to make sure they got on the "A" list.
UNOS has roundly rejected the idea. Dr. Michael Shapiro, the chief of transplants at the Hackensack [NJ] University Medical Center who chairs the UNOS ethics committee, says that while it might seem sensible at first, a closer look reveals some serious problems -- both ethical and practical.
LifeSharers weights donations on what Shapiro calls a "goodness thing" -- which he compares to moving war heroes up the list and bumping criminals down.
"We don't believe that organs should be allocated based on a person's social worth or social utility," he says. "We don't allocate organs because someone is better than someone else."
Shapiro also wonders how to stipulate when someone must sign up in order to be considered for a transplant. In other words, what's to prevent people from joining only after they need an organ?
LifeSharers currently has a 180-day moratorium. The average wait for a kidney transplant is three to five years.
As it stands, transplant law allows donors to direct their organs to specific people but expressly forbids them from limiting donations to specific groups -- like members of a certain religion or race (both have been tried). This has left LifeSharers to perform some serious legal limbo.
Upon a member's death, family or friends must place a call to LifeSharers in order to find out who needs a transplant. They can then pass the names over to the hospital.
And they must do so on their own accord. The LifeSharers donor card -- which directs organs to "that LifeSharers member who is the most suitable match" -- falls well outside of current legal boundaries.
As Shapiro puts it, "The LifeSharers donor card can say anything it wants, but it has no legal or ethical bearing."
The system has yet to be put to the test; no LifeSharers member has died in the right circumstances. But 46 currently need a transplant. Undis says that with the current size of his roster, there's an even chance that one could take place within the year.
Once it does (and if it can), Undis expects that roster to grow. If it gets big enough, he hopes, UNOS might be forced to reconsider his plan.