A Members-Only Club for Organ Donors

June 14, 2006 — -- Dave Undis founded the nonprofit group LifeSharers in 2002 with the philosophy that a real incentive -- other than altruism -- was missing from organ donation.

Be willing to give -- and you shall receive, was his thinking.

"We offer people a really good trade: You agree to donate your organs when you're dead and they're no good to you anymore. In exchange, you move up the waiting list if you ever need a transplant to live," said Undis, who lives in Nashville, Tenn.

So far, 4,526 people from all 50 states have joined LifeSharers, pledging to donate their organs only to other members when they die. If there is no suitable match, a person's organs can be donated to a nonmember.

Undis believes restricting organs only to people who are willing to donate their own is the fairest way to distribute precious organs, while others balk at the notion.

As Dr. Douglas Hanto, chief of transplantation at Harvard Medical School, puts it, an organ "ought to go to the person dying in the ICU, not the person sitting at home with a LifeSharers club card."

Undis is quick to point out that LifeSharers is free and open to everyone. So far, 24 people waiting for organs have joined LifeSharers.

But despite Undis' efforts, so far there have been no transplants from one LifeSharers member to another, as no one has passed away under the right circumstances to donate (such as brain death after a car accident).

A Persistent Shortage of Organs

More than 92,000 Americans are waiting for life-saving organs on the official United Network for Organ Sharing -- UNOS -- waiting list. Seventeen people die each day waiting for an organ, according to UNOS.

Some people, like Undis, would like other options.

"When I was waiting on the list, I would probably wish there was a second group I could go to," said Howard Kindred Sr., a liver transplant recipient in 1995 and founder of a Pennsylvania transplant support group called NEPATSG. "My wife was on a roller coaster ride -- along with my son -- not knowing if I was going to live or die.""As a country, we should be kind of ashamed," said John Landsberg, a LifeSharers member from Leawood, Kan., who donated a kidney to his son in 2001. "There's a huge shortage. We need to figure out how to allocate ... organ donations. If you're willing to donate an organ, you should be at the top of the list to get one."

What's Fair?

However, some view LifeSharers' mission as an attempt to jump ahead of those with the most need or the best medical match.

"To make belonging to the group trump all medical criteria seems unfair and hard to justify from an ethical standpoint," Hanto said.

Undis finds fault with this viewpoint.

"People always worry about what is fair to the people waiting for organs. What is fair to the people who are giving organs? Is it fair to take his organs and give them to someone who is too selfish or lazy to donate his organs?" Undis said.

Giving an organ to someone who is not an organ donor, Undis also said, is "like giving the lottery jackpot to someone who didn't buy a ticket."

Ethicist Mary Simmerling disagrees. Illness, and not a willingness to donate, should be the guiding reason someone gets an organ transplant.

"It ought not to be that way," said Mary Simmerling, senior fellow with the MacLean Center for Clinical Medical Ethics at the University of Chicago. "The fact that you're sick is your ticket to get in."

"There is something disturbing about the club feel of it," Simmerling said.

She believes every effort should be made to prevent special advantages in organ donation based on race, income, access to information or club membership.

Both Simmerling and Hanto believe organs should be distributed according to the official UNOS system created by doctors, ethicists, clergy, organ donors and recipients.

Hanto also points to another initiative, the Organ Donation Breakthrough Collaborative, which has tried to increase organ donation within the current system and benefit those most in need.

The Collaborative -- launched in 2003 by a division of the U.S. Department of Health and Human Services -- seeks to increase successful donations by identifying and sharing best practices between hospitals and health professionals.

Membership Expands

The incentive seems to be working for some. Undis said LifeSharers has grown at a rate of 45 percent since this time last year. Word spreads by word-of-mouth, media stories, the Internet and bumper stickers.

Families are often signing up together. Ten percent of the members are children signed up by parents or guardians, Undis said.

While there is much contention about the LifeSharers approach, everyone appears to agree on the goal -- increased organ donation.

As Undis explained, "Every year Americans bury or cremate about 20,000 transplantable organs. If we could just get people to stop throwing away organs that would save their neighbors lives, we could save thousands of lives every year."

For more information on LifeSharers, visit www.lifesharers.org or call 888-ORGAN88.

To register as an organ donor, call 800-94DONOR and make your wishes known (from U.S. Department of Health and Human Services):

1. Indicate your intent to be an organ and tissue donor on your driver's license.

2. Carry an organ donor card. (http://www.organdonor.gov/signup1.html)

3. Most important, discuss your decision with family members and loved ones.