Patients increasingly going online for kidney donors
Online organ donor use debatedTuesday, October 30, 2007
Diane Suchetka
Plain Dealer Reporter
Vadim Finkelstein needs a kidney.
Without one, the 39-year-old Solon man has to undergo dialysis three times a week, four hours each time. Afterward, he's so weak all he wants to do is go home and crawl into bed.
Thirty miles away, in Mentor, a technician pokes a needle into Steve Derezic's arm and hooks him up to the dialysis machine at his side. Derezic is 49. He has been on the national organ transplant list for three years. It could be two or three more years before he reaches the top.
Nearly 100,000 Americans are in the same boat. And it's full of holes.
Of the 91,376 people waiting for kidneys last year, 4,276 died.
So Finkelstein and Derezic, like thousands of other patients, are reaching for a life raft: the Internet.
"Please help my mommy," people plead in their online ads. "Too Young to Die," they say, hoping they've found the words to persuade a stranger to give up a piece of himself.
"It's like playing roulette," says Donnie Doyle of Minnesota, who's using an online classified ad to search for a kidney for his 24-year-old son. "I can hit bigger numbers by doing this.
"It's not the easiest thing to do, to say, 'Yeah, you can have one of my vital organs.' "
It's not the easiest issue for the rest of us to come to terms with, either.
"It's a very huge ethical conundrum," says Dr. Mark Aeder, surgical director of kidney transplants at University Hospitals Case Medical Center and a former member of the ethics committee of the American Society of Transplant Surgeons.
Professional organizations find themselves smack in the middle of the debate. And they've taken different sides.
The nonprofit United Network for Organ Sharing, which oversees America's transplant list, for example, says it will not participate in the solicitation of organs for specific patients.
"We want to make sure that the potential living donor knows what is involved, what the medical risks are, and what options he or she has," the group's statement says. "We also need to maintain public trust in the national transplant system and to ensure that candidates are considered equitably."
The Society of Transplant Surgeons had opposed the transplantation of organs that patients found for themselves. But it shifted its position in 2006. Now, it supports the public pleas because of the organ shortage, its statement says. It does so under two conditions: that the donor is motivated by kindness and that measures are in place to ensure the safety of the patient and the donor.
"It's still not a well-accepted policy," says Aeder. "We, as a group, are trying to find our own comfort level, as everybody else is."
One of the biggest concerns, he says, is making sure donors know all the risks - physical and emotional.
"You have to do everything you can to protect the individual who steps forward to do that," Aeder says. "They should never come back and say, 'I'm sorry I did this.' "
People have solicited for organs for years - on billboards, through churches, in news stories.
What's heating the debate is increased use of the Internet and Web sites such as MatchingDonors.com.
"It's controversial for two reasons," says Marty Smith, director of clinical ethics at the Cleveland Clinic.
The first, he says, is fairness.
The traditional system, the national organ transplant list, prides itself on its objectivity. When an organ becomes available, it goes to the patient who is the best match, according to the nonprofit organ network. Recipients are chosen by blood and tissue type, how badly they need the organ for survival and how long they have waited - not financial status, gender, religion or ethnic background, the group says.
That's not the case when donors and patients go in search of each other.
Does the writer who composes a beautifully passionate plea for an organ have an advantage over a mediocre writer who's closer to death? Smith asks.
And what about other traits?
Are deeply religious parents of young children more likely to find donors than single atheists?
Money comes into play, too.
Those who are poor are less likely to have home computers and Internet access. And Web sites often charge for the ads.
Patients pay $295 for a 30-day posting on MatchingDonors.com; $441 for 90 days; and $595 for a lifetime. But it waives the cost for those who can't afford to pay, its founders say.
The big money concern, though, is that donors might really be sellers who want to be paid for their organs.
The co-founders of MatchingDonors.com have taken steps to keep that from happening. They post a warning on their Web site, in big, red letters: "It is absolutely against the law to have any financial benefit from organ donation," it says. "If you are paid, or request to be paid, for any transplant you will be prosecuted to the full extent of the law."
"I think there is the potential for mischief," says Dr. Jeremiah Lowney, a Boston internist who co-founded MatchingDonors.com in 2004, "but probably no more than for any other live-donor transplant.
"We've had people who've called us and said, 'Hey, this guy just called me and said I'll give you my kidney, but I want $20,000.' The good thing about it is most of our patients, actually all of the people who've come on the Web site, have had four or five people interested in helping them out. So the incentive is not there to pay someone on our Web site, because there's so many other people willing to do it for nothing."
And what about the guy who donates his kidney to his brother? Lowney asks. "That's great. But did the mother say, 'You better donate to your brother or you're going to be out of the will'?"
The strongest argument in support of Internet organ matches, though, is that they help everyone on the national list of potential recipients, by moving them all closer to the top.
That, some say, gets to the real problem: Not enough people donate organs after death.
"The current system isn't working," Lowney says. "There are potentially thousands and thousands of unbelievably beautiful people willing to donate out of the kindness of their hearts. And we can't continue to ignore them."
Ethicists agree that more donors are needed.
"If we got more people to donate organs after death, we probably wouldn't even be having this debate," says Smith, the Cleveland Clinic ethicist. "I think this could prod us as individuals, and maybe as a country, to keep thinking about better ways to solicit donations after someone has died."
Until then, those who need organs and their families say they see nothing wrong with using the Internet.
"This is just additional hope," Finkelstein's wife, Alina, says about her husband's posting on MatchingDonors.com, which she hopes will end his four years of dialysis. "It makes the pool wider. I can't say enough about these people who donate. They're giving life."
Dr. John Nekic, a Boston physician who posted brother-in-law Steve Derezic's plea for a kidney on MatchingDonors.com, agrees.
"My sister's children have seen more ambulances than any child should ever have to see," he says. "I'm just trying to preserve the children's innocence - that's the bottom line.
"Is it fair? I don't know. But if another 10 people can get organs, that's 10 more families whose quality of life is improved."
To reach this Plain Dealer reporter:
dsuchetk@plaind.com, 216-999-4987
http://www.cleveland.com/plaindealer/stories/index.ssf?/base/news/1193733244223070.xml&coll=2
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