By SHABINA S. KHATRI
FREE PRESS STAFF WRITER
March 8, 2007
What’s growing inside Sonya Cook is a miracle of life.
Anchored within the abdomen of the 38-year-old African-American woman from Detroit are two tiny kidneys from a Chinese toddler, both growing to adapt to their new adult host. The organs, donated by the American adoptive parents of the 2-year-old girl who died from the flu, have kept her alive and off dialysis for the past two years.
They have also forever changed her outlook on life – and organ donation.
“Before I lost my kidney function, I did not believe in transplants,” said the single mother, who went on dialysis five years ago. Now, she asks: “What if you need an organ? Are you willing at the time of death to give your organs?”
“We’re offering what I think is a really good trade – you agree to donate your organs when you die, and, in exchange, you increase your chance of getting a transplant when you live.”
- Dave Undis, Lifesharers founder
A Nashville, Tenn.-based organization called LifeSharers says people like Cook shouldn’t be able to get organs unless they first agree to donate their own. That belief is at the heart of a debate about how to effectively jump-start Americans’ desire to donate their organs and, in the process, prevent thousands of deaths each year.
LifeSharers, which says its national membership is on the rise, says it is helping to solve a growing problem, but critics are skeptical about the group’s effectiveness – and contend that its organs-for-donors policy isn’t ethical.
“Over 6,000 people a year die waiting for transplants while neighbors are burying or cremating 20,000 organs a year,” said Dave Undis, LifeSharers founder. “If you had to be an organ donor to be eligible for a transplant, this wouldn’t be happening.”
Statements vs. intentions
What’s happening now is that many Americans’ words don’t match their intentions. According to a 2005 Gallup poll, 95% of Americans said they support organ donation, but only 78% of those surveyed said they would actually donate their organs.
And, according to the poll, the number of organ donors is even scarcer among minorities. While nearly three in five white people indicated they were very likely to donate their organs, two-fifths of Latinos and only about one-third of blacks or Asians indicated that.
Meanwhile, demand for organs continues to grow faster than supply. Each week, the U.S. government says, more than a hundred Americans who need transplants die before receiving them. There are more than 95,000 people on a national waiting list, according to the United Network for Organ Shortage.
That’s where LifeSharers comes in. Undis said the group isn’t the perfect solution, but it’s one way to help tackle the shortage. Since it started in 2002, membership in LifeSharers has grown to more than 8,000.
The group operates like this: Members agree to donate their organs upon their death. They also agree to offer their organs first to other suitable LifeSharers members before making them available to others on the national transplant waiting list.
Typically, transplant recipients are matched to organs by factors like need, health, age and geography. But under the law, people can specify that family and friends be given priority for their organs. For members of LifeSharers, the circle of preferred friends from which doctors can choose a recipient consists of thousands of other LifeSharers.
Undis said LifeSharers does not participate in the matching process, but the group encourages members in need of organs to register with the national waiting list. If a LifeSharer member died in a way that made donating their organs possible, Undis said a hospital would be able to search for other LifeSharers on the national list.
So far, no one in LifeSharers – which currently has 47 members on the national transplant waiting list – has died so no organs have become available through the program. But Undis said he anticipates membership will skyrocket once people see the network in action.
“We’re offering what I think is a really good trade – you agree to donate your organs when you die, and, in exchange, you increase your chance of getting a transplant when you live,” Undis said. “Giving an organ transplant to someone who refuses to be an organ donor is like giving the Powerball jackpot to someone who didn’t buy a ticket. You got to be in it to win it, right?”
A doctor’s view
The idea that people would only give to other donors doesn’t sit well with Dr. Jeff Punch, chief of the division of transplantation at the University of Michigan Medical Center.
Punch said that he’d want an organ “to go to who we collectively as a transplant community would determine is the person with the most need,” adding that an alternative system like LifeSharers sounds rational, but would be “very inefficient and not very fair to the vast majority of people.”
Gift of Life Michigan, the state’s largest organ recovery organization, also doesn’t advocate the organs-for-donors approach. “There is no magic bullet for solving the shortage of donated organs,” spokeswoman Jennifer Tislerics said.
The group and its national affiliate instead advocate more inclusive measures, including action taken earlier this year by the Michigan Secretary of State’s Office, which launched an online campaign to attract donors. The effort has paid off: since January, about 29,000 Michigan residents have signed up to be organ donors.
Still, the need in Michigan for organ donors remains high. More than 3,100 Michiganders are waiting for organs. Last year, more than 160 died before receiving a transplant, and 95 were removed from the list after becoming too sick to survive surgery.
The latter is constantly on the mind of 59-year-old Fenton resident Ronald Jedrzejas, who has been waiting for a kidney for four years.
“There’s always the threat in the back of my mind that one of these days I’m going to come down with an illness that will disqualify me for a transplant,” said Jedrzejas, who lost his kidneys to cancer in 1999. “I would be in very tough emotional health if that happened.”
Though he had signed up to be an organ donor years before needing a transplant, Jedrzejas said he worries that LifeSharers would exclude those who don’t have healthy organs to donate.
“Lots of people with high blood pressure, liver damage, kidney damage – there’s not much left to donate,” said Jedrzejas, who adds that he wouldn’t totally rule out joining LifeSharers. “That doesn’t mean they don’t need a kidney as bad as I do.”
Why people don’t donate
There are many reasons people don’t donate, including cultural, religious and moral beliefs. Cook, the Detroit mother, said that for her, it was the belief among some African Americans that organ donors’ bodies will not be presentable for funerals.
Some believe they are too old to donate, and others, like Martin Djelaj of Shelby Township, worry about violating the tenets of their faith.
“That was my No. 1 concern,” said the 24-year-old real estate investor who is Catholic. “But I came to find out that it’s OK.”
Last month, Djelaj was upgraded to preferred status with LifeSharers, which requires members to wait six months before becoming eligible for an organ transplant as a way to encourage people to join while they’re healthy.
“I think it’s a very fair idea,” Djelaj said. “There are so many people who want an organ but aren’t willing to share one.”
Even though Cook used to be one of them, she doesn’t believe in the LifeSharers approach.
“It should go by greatest need and match,” said Cook, who acknowledges that if her donor’s parents had been members of LifeSharers, she may not have gotten her transplant.
Cook is now a volunteer at Gift of Life Michigan and has signed up her 4-year-old daughter as an organ donor. She’s grateful for the second chance at life.
“Not for one day will I ever say that I hate that this happened to me,” she said.