JACKSON, Miss. -- Amanda Hayes of Yazoo City, Miss., has been waiting for a kidney since 1994, so she has some pretty strong opinions about organ donation.
She favors giving preference on the national organ donation list to recipients who have taken good care of their health, despite their disease, and would take care of the new organ. Hayes goes to dialysis three times a week, doesn't drink and keeps her weight at the right level.
"I'm keeping myself healthy. If I was able to give a kidney, I would be on a donor list," she says. "They should look at that closely."
For people like Hayes, 39, the waiting is one of the most frustrating parts of needing a new organ. And more people are waiting in the USA than ever before.
Last fall, for the first time in its history, the national organ transplant waiting list topped 100,000 people, according to the United Network for Organ Sharing (UNOS), the non-profit assigned by the federal government to maintain the list. The list is up to 100,457, and three out of every four are waiting for a kidney.
Waiting is their reality
Alan Hawxby, transplant surgeon at the University of Mississippi Medical Center in Jackson, says the growing list is evidence of a dire need for more organs.
"We do tell people what to expect," he says. "Waiting for them is kind of a way of life. It's just the reality of their lives."
For some patients, a kidney can take six months to find, but that's only for those with Type A blood. It can take two or three years or more to find a match for O and B types, Hawxby says.
UNOS says 45% of patients on the list have been waiting two or more years for a kidney, heart, liver or some other organ.
The growing list of Americans waiting for organs prompted David Undis, president of the non-profit organ donation network LifeSharers, to propose last fall that UNOS reorder the list to give preference to patients who had agreed to become organ donors before their illness. The waiting list is now calculated to give the sickest patients the highest priority.
Undis says only half of the people eligible to become organ donors actually sign up, meaning millions of viable organs are buried with their original owners every year.
Creating "A" and "B" priority lists favoring those committed to becoming organ donors would greatly increase the number of people who sign up to be donors themselves, he says. No one would want to take the chance of ending up on the "B" list, Undis says.
"Altruism, which is a wonderful thing, just is not a sound basis for public policy," Undis says. "There are nice people out there, but there aren't enough out there to fix this problem."
Creating a new system
Six-year-old LifeSharers, based in Nashville, is itself an attempt to create a preferential system in miniature. LifeSharers' 10,000 members all have agreed to donate their organs upon their death, with the stipulation that first priority goes to any LifeSharers member in need.
Undis says the idea has not yet been put into practice because no members have died. Incorporating the LifeSharers model into the national waiting list has not gained much traction with UNOS, which has committees tasked with tweaking the waiting list protocols.
UNOS president Robert Higgins, a heart surgeon, concedes that there are problems with the list, starting with the fact that minorities are disproportionately represented. "Certain populations wait a long time. We need more organs."
UNOS processes 7,000 to 8,000 organ donations each year. And while organ transplantation, once a chancy procedure, has become more routine, Higgins says the demand has increased as the U.S. population has aged and people have become less healthy.
Higgins contends the LifeSharers' proposal raises some complicated questions.
"If you had a child who had liver failure who wasn't a donor, that child deserves to have a transplant even if they weren't a donor," Higgins says.
Likewise, some people -- those without driver's licenses, for instance -- might never have been presented with the option of becoming a donor, he says. Higgins acknowledges that the problem will get worse as Baby Boomers age and chronic illnesses become even more common.
Logical, but will it work?
Mark Fox, associate director of the Oklahoma Bioethics Center at the University of Oklahoma-Tulsa, says fixes such as the LifeSharers plan have "inherent logic" to them.
Perhaps prior willingness to donate could factor in as a "tiebreaker" in awarding organs, but he says there is no evidence such a plan would increase donation.
"We are an age- and death-defying society," he says. Most people do not sign up to donate because they do not think about their own medical frailties, he says.
Fox says a benefit of the current system is that is it based on science and has been developed in a thoughtful and open matter.
Billions of dollars have been poured into refining organ transplant procedures and the medical machinery needed to keep patients alive while they wait, he says, but less effort has been put into healthy living strategies.
"We haven't managed the demand side of the demand-supply equation," he says.
Joyner reports for the
Clarion-Ledger in Jackson, Miss.
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