Transplant deals run into brick wall

Doctors won't touch arrangements made over the Internet

By Jim Erickson

Rocky Mountain News

December 13, 2004

Karen Traxler needs a kidney, so she turned to the Internet and within a week found 17 potential donors.

But when the 37-year-old mother of two related the good news to her transplant team at the University of Colorado Hospital, doctors there refused to test the potential donors to determine if they are a match, she said.

"They told me to stop rocking the boat, to try to sail into smooth waters, be patient and a kidney will come along," said Traxler, who lives near Red Feather Lakes, northwest of Fort Collins, and is one of 60,000 Americans waiting for a kidney transplant.

On Oct. 20, a transplant team at Presbyterian/St. Luke's Medical Center in Denver performed the first kidney transplant arranged through a commercial Web site.

Since then, St. Luke's, the University of Colorado Hospital and transplant centers across the country, concerned about the possible ethical implications, have refused to perform Internet-arranged transplants. Many won't even test potential donors found over the Internet.

During a visit to the CU hospital last week, Traxler mentioned to a transplant doctor that she had talked to several reporters about her plight. The physician called her a troublemaker and warned her to keep quiet, Traxler said.

"He said, 'If you stop talking to the media, I just know you'll get a kidney faster,' " Traxler said Friday. "There was a suggestion that if I kept quiet, that I would be rewarded."

Hospital spokeswoman Sarah Ellis said she could not comment on a conversation a patient "may or may not have had" with a physician.

The Oct. 20 transplant at St. Luke's sparked a nationwide debate over the ethics of Internet-arranged transplants.

In that operation, Robert Smitty, 32, of Tennessee, donated a kidney to Robert Hickey, 58, a retired health care executive living in Edwards, near Vail. They found each other over the Web site MatchingDonors.com.

On Nov. 11, the American Society of Transplant Surgeons issued a statement opposing the solicitation of organ donors through "commercial Web sites, billboards, media outlets or other forms of advertising when the intent of such solicitation is to redirect the donation to a specific individual."

Several transplant programs reacted by adopting the society's position and slamming the door on Internet donors.

Now Hickey, who says his life was transformed by the kidney operation, is mounting a legal attack on hospitals that shut out Web donors.

Hickey said he's found a law firm in Alaska willing to take the case pro bono. The lawyers are gathering written copies of transplant policies at hospitals across the country and researching the law that established the United Network for Organ Sharing.

UNOS, as it is known, has run the federal organ procurement and transplantation network since 1986.

"I'm just outraged," Hickey said. "People are being denied access to care, and for some of them it's going to be a death sentence."

"Any transplant surgeon who is refusing to do a transplant for somebody is acting unethically and violating the Hippocratic oath to do no harm," he said.

But Dr. Igal Kam, head of the University Hospital transplant team that operated on Hickey, disagrees. In his view, the Web sites prey on desperate patients and discriminate against the poor. Patients pay up to $295 a month to be listed on MatchingDonors.com, with no guarantee they'll ever receive an organ, he said.

"If anybody really wants to donate a kidney, he can go to a kidney transplant program, knock on the door, and say, 'I'm here to donate one of my kidneys,' " Kam said.

"It's already happening in America, and we call them Good Samaritan donors," he said. "But if we open it up and allow people to negotiate - donors and recipients over the Internet - we always create the risk that money will be exchanged between the donor and recipient."

Dr. Jeremiah Lowney, the Boston internist who co-founded MatchingDonors.com, said his Web site does not discriminate against the poor.

In fact, the second Web-arranged transplant is scheduled to occur this week and involves a teenage boy whose mother posted her son's profile on MatchingDonors.com for free, Lowney said.

"So these people who are saying, 'It's for rich people' or 'It's for people who are important' - that's just hogwash," he said.

This week's surgery involves a male donor in his 30s from the Midwest who will fly to an undisclosed location in the South to donate a kidney to a total stranger, Lowney said. The unidentified donor will pay his own expenses.

Nearly 1,600 people have signed up to donate organs through MatchingDonors.com.

"What we're trying to do with our Web site is augment the system, not subvert the system or go around the system," Lowney said. "We're trying to augment it by bringing in new people that otherwise would have never thought about organ transplantation."

Meanwhile, Karen Traxler is searching for a hospital willing to screen the potential donors she found through MatchingDonors.com.

She has compiled a list of 258 U.S. transplant centers and is calling each one on the list. She's contacted 14 or 15 so far, and only Johns Hopkins Hospital in Baltimore was willing to consider it, she said.

Traxler was born with a congenital kidney defect - four kidneys instead of two - that has worsened over the years.

Her two right kidneys were removed when she was 19. One of the left kidneys later failed, and just 11 percent of the remaining kidney is functioning, she said.

"At 10 percent I go on dialysis, and I'm really, really hoping that I can put that off until I can find somebody," she said.

Traxler has been on the donor waiting list at University Hospital for a little over a year. She hopes to continue working with the hospital to get the donor policy changed.

"They're denying me the right to have a good healthy life," she said.

"But what I'm doing is not just for me. It's for all those other people that are too sick to be able to fight for this, or too afraid of all the repercussions to be able to fight for this. And I believe strongly in my heart that it's right."

Copyright © 2004 The E. W. Scripps Co.

This article posted December 29, 2004.