Saving lives with the Net

By Casey Freeman

Colorado Daily Staff Writer

July 24, 2005

Michael Wharton is just like most 23 year olds. He enjoys hiking, biking, snowboarding and riding his moped around town.

Except he's unable to do any of those things.

Wharton was born with a disease that makes it hard for his kidneys to filter out poison, so they shut down, making him susceptible to infections in his blood, bladder and urinary tract.

"I can't be 23, I can't do things normal 23 year olds do," said Wharton, who now lives across the street from the medical center in Fort Collins where he spends three days a week receiving dialysis for five hours. "I can't be myself."

Wharton said he has been "jacked around by doctors" for five and a half years trying to get on the United Network for Organ Sharing (UNOS) waitlist to receive a kidney. It's been difficult for Wharton because he is on Medicaid, which makes the process to get on the list even longer.

More than 89,000 people are on the UNOS waitlist. Every day about 74 people receive an organ transplant, while 17 people die waiting, according www.organdonor.gov.

While these may just be numbers to healthy Americans, they are real to Wharton. Both his mother and his best friend died while on the list.

Last October, however, the outlook changed for those in need of organs.

Bob Hickey of Edwards, Colo. received a kidney from Rob Smitty, a photographer from Chattanooga, Tenn.

Transplant surgeries happen every day, but this was the first of its kind. Hickey and Smitty met on a website called www.MatchingDonors.com that pairs potential donors with people in need of transplants.

It's a surgery that almost didn't happen.

The original date was postponed for two days because Dr. Igal Kam had ethical concerns because he thought it was possible Hickey had bought Smitty's kidney over the Internet.

Hickey says the only reimbursement he gave Smitty was lost wages from work and the price of his family's trip to Denver.

"We got a great deal of national and local press," said Hickey.

Wharton saw the coverage on the local news and started researching www.Matching Donors.com, and even spoke with Hickey a few times.

The website does no marketing, leaving its advertising to the word of mouth.

"It has been growing with all the good people out there," said Robert Volosevich Jr., vice president and spokesman for MatchingDonors.com. "Our main goal is really just to help donors let people know there are thousands of good people out there. We want people to do live donations."

In January, Wharton grew even sicker and too fatigued to get to his classes at Front Range Community College or his landscaping job.

Even though he could not pay the fee for www.MatchingDonors.com, the website allowed him to post a profile and use the services.

"So far I am extremely happy with MatchingDonors.com," said Wharton. "I've had people contact me and I've contacted people, but no donations are in the works."

Wharton has already made one connection that may not save his life, but will make it easier.

Sally Kennerson a regional sales manager for Schwan's Frozen Foods, heard Wharton's story and invited him to live with her family in Denver.

"Giving birth is one thing, saving a life is another," said Kennerson, who is a mother of three.

Kennerson used www.MatchingDonors.com to donate a kidney this March to a woman she had never met. She said she thinks the website had revolutionized donating organs.

"I'm kind of a free thinker and I think people should be able to choose who you give your organs to," said Kennerson. "I liked to be able to choose who my organs go to rather than just an organ bank."

Kennerson chose the recipient because she found her to be living a healthy life and thought she would be somebody who would take care of her kidney.

"It's nice to find a good home for my kidney," said Kennerson. "I wish I could give another one."

Ethicists in the medical field are torn on the issue.

"People have concerns about MatchingDonors.com and other similar kind of commercial ventures," said Mark Yarbrough, Director of the Center of Humanities and Bioethics at Health Science Center at the University of Colorado. "People think it is very important not to cross the line into creating an active market where you buy and sell organs."

Yarborough, who has a Ph.D. in philosophy from the University of Tennessee at Knoxville, said many medical ethicists and doctors have not made up their minds about Internet sites such as www.MatchingDonors.com and most of the talk has been speculation.

"Matchingdonors.com is clearly not buying and selling organs, but it's getting too close for comfort for those people who have strong concerns about avoiding any kind of commercialization of organs for transplantation.

"I think the underlying ethical concern are issues of fairness and equity and justice," said Yarborough. Yarborough said he worries that if people choose who they want to donate to, some potential recipients may receive organs solely because of race, religion or class rather than medical need or urgency.

"People will favor others regardless of need," said Yarborough.

But some people who have been through the waitlist feel UNOS is more harmful than helpful.

"UNOS is a disreputable firm," said Hickey, who was diagnosed with kidney cancer in 1997, and had one kidney removed in 1998. By then, the cancer spread to the other kidney. He spent nearly six years going to dialysis 15 hours a week while waiting on the UNOS list.

"They're supposed to be not-for-profit, but they pay lavish salaries," said Hickey.

Hickey said UNOS is trying to block live donations, because UNOS only receives money from hospitals and fees when donations come from cadavers.

Wharton hasn't even gotten to the UNOS list, and already has harsh words about it.

"UNOS is really not coordinated and no one seems to know exactly what they're doing," said Wharton. "The list is just unacceptable."

Even Yarborough is critical of the organization.

"There's a lot of frustration and distrust in the current system. A lot of people think it's unfair and they point to cases like Mickey Mantle," said Yarborough. "Things like that that engender a lot of mistrust in the system and people think it's rigged."

UNOS claims to have had no part in blocking Hickey's, or anybody's live organ donations.

"The transplant center decides if someone can donate or not," said Annie Moore, a spokesperson for UNOS. "We don't have any authority in that area. It's not even an issue for us. Our concern is if living donors are being informed, or if the donor is being exploited."

The medical director at www.MatchingDonors.com attended a UNOS meeting, said Volosevich.

"They (UNOS) support live donations," replied the spokesman.

Since Hickey's surgery, surgeons questioning the donor's motives have not interrupted transplants. However, there are some hospitals, such as the Health Science Center at the University of Colorado, that will not perform transplants when the match was found on the Internet.

Currently, there are more than 2,200 potential donors on www.MatchingDonors.com, with 182 recipients waiting for various organs from kidneys to livers or lungs.

"At the end of the day, if you transplant ten people instead of eight people, who can argue with that?" said Yarborough, who suggests using live donor agencies such as Donor Alliance, so the organs still go to the people who need them the most.

"I encourage people to explore it," said Kennerson. "Giving my kidney hasn't changed my life one iota, except I'm softer. This is an opportunity to give back."

Contact Casey Freeman on this story at (303) 443-6272 ext. 147 or freeman@coloradodaily.com

Copyright © 2005 Colorado Daily.com.

This article posted August 10, 2005.