Internet site matches donors and patients
Some see problems, but founder of nonprofit cites its successesBy BRIAN NEWSOME
THE GAZETTE
October 23, 2007 - 7:20AM
Somewhere in the air between New York City and Denver last March, Linda Chalson’s sister was thumbing through a People magazine when a story on page 127, “Kidneys Online,” caught her eye.
She learned that people in need of transplants were finding living donors via a Web site called MatchingDonors.com.
Chalson, 58, had waited two years for a kidney. Her sister called her about the Web site when the plane touched down.
That month, 30-year-old Matthew Bowers of Colorado Springs also thumbed through the magazine. His eyes widened at the story.
“I never knew you could be a living donor until I read that article,” he said.
Curiosity led the two strangers to visit the Web site and eventually post personal profiles there, one of need and one of an eagerness to give. Four weeks ago, the healthy father of two gave his kidney to the retired New York City schoolteacher. The two formed a friendship in the process.
Such matchups are increasingly common. For would-be recipients, the Web is a way to broadcast a plea rather than relying on the federal government’s United Network for Organ Sharing list, which allocates organs based on a series of factors, chiefly how sick someone is.
Possible donors, in turn, find out how they can help people who need organs that are in short supply nationally.
“Linda is going to get to see her grandkids graduate high school,” Bowers said.
The Internet approach also raises ethical questions, such as whether the sickest get overlooked for the savviest, and whether the Internet provides a venue for illegal organ selling. MatchingDonors.com founder and chief executive officer Paul Dooley said the nonprofit site is widely accepted by doctors and ethicists, with success stories outnumbering concerns.
Two strangers
Chalson, a former elementary teacher with two grown children and two grandchildren, retired in September 2004, partly because she was becoming more fatigued. She has Alport Syndrome, an inherited and incurable disorder that attacks the kidneys. Her father and a brother died in their 50s, one of heart disease and the other of a stroke, and she thinks their poor health was related to the genetic disorder.
She was on the federal government’s United Network for Organ Sharing list for two years, but time was running out. She only had about 15 percent function left in her kidneys and would need dialysis if that percentage continued to drop.
Then her sister called. The next day, her daughter-in-law, who also had seen the story,
faxed over a copy of the article.
“I was a little nervous,” Chalson said about the idea of soliciting for an organ online.
After going to the Web site and evaluating its legitimacy, she decided to post her profile. A relative, a promoter by trade, helped her write it, emphasizing details about her family — her father was a policeman and one of her two brothers was a Marine who died in Vietnam.
A short time after Chalson registered, Matthew Bowers came across the same article that Chalson had read.
“It just blew me away,” he said. “I’m yelling to my wife and said ‘Hey, read this article.’”
Bowers spent the next few weeks researching organ donations online in his spare time.
“It’s amazing how many people are waiting for a kidney,” he said. He began to consider his excellent health history and wondered if he should volunteer to be a donor.
“Donating a kidney, to me, just really didn’t seem like a big deal,” he said.
His wife said the idea was “weird” and worried about the risk of surgery. She supported him, he said, because it was his body and he should decide what he does with it.
He decided he wanted to help someone affiliated with the Marines, since his wife and many of his friends are Marines.
He posted his profile, describing himself and expressing his willingness to help someone affiliated with the Marines.
The phone call
Bowers returned from work and saw an out-of-town number on caller ID. When he called it, he reached Chalson, who had responded to his profile.
It was a call she had been afraid to make. “I just didn’t know what to do,” she said.
In an awkward few seconds in which she said who she was and he affirmed his willingness to help, she broke down in tears.
Bowers spoke with Chalson’s husband, Allen, and the two talked about their families and discussed how they should proceed. Bowers went to Memorial Hospital to be tested for his compatibility as a donor, by no means a given. He underwent additional tests over the next several weeks, and months later he was on a plane to New York to meet the Chalsons and endure another barrage of medical testing.
Possible donors undergo blood tests, urinalyses, X-rays, ultrasounds and other procedures to boost the odds of a successful kidney transplant.
Bowers passed all the tests.
Chalson’s Medicare coverage paid Bowers’ medical bills. She covered his travel expenses, and on Sept. 25, the pair lay side by side at Mount Sinai Hospital in New York.
A few hours later, both were sore but couldn’t have been happier, they said.
“I showed up, went to sleep and woke up a little sore,” Bowers said, downplaying his sacrifice. “It’s a big, big deal for her.”
Already, Chalson says she feels stronger. Bowers is back at work as an assistant manager at Discount Tire Co.
A growing enterprise
The Bowers-to-Chalson donation is among 58 transplant surgeries credited to Matchingdonors.com, Dooley said. He formed the nonprofit organization after his father died in 1996 waiting for an organ. The first organ recipient through the site had surgery three years ago and now advocates for living-donor transplants, Dooley said.
Forty more surgeries are scheduled in the next few months.
Ethicists are exploring questions about Internet organ matchups, said Mary Ann Cutter, a bioethicist at the University of Colorado at Colorado Springs.
MatchingDonors.com warns in bold letters that selling organs is illegal, but there is no system to prevent someone from offering organs for a price. Some people might skirt the law by receiving generous compensation for travel, time off or other expenses, Cutter said.
Some have also said it creates favoritism, where someone may donate based on age, gender, race or even the bestwritten story, rather than need.
Such concerns have led some hospitals to refuse Internet-initiated transplants.
Dooley, though, said most hospitals have accepted the idea. Critics, he said, are often won over by the success stories. He pointed to Dr. Francis Delmonico, the immediate past president of the federal organ-sharing network that traditionally manages the nation’s organ supply.
Delmonico told People magazine he would refer people to MatchingDonors.com, saying, “I believe genuinely that those guys are trying to do good by patients.”
The United Network for Organ Sharing handles the national database for deceased and living organ donors and potential recipients. A host of factors determines wait time, from obvious ones such as the severity of an illness and time on the list to a person’s location and size.
Dooley conceded that some people have used the Internet site to try to sell organs, despite the warnings, but he said only about 40 people tried to use the Web site for that purpose out of the millions of hits on the site.
Regarding favoritism, Dooley said that with any philanthropic act, “People want to be empowered with the ability to donate where they want to donate.”
Bowers said he doesn’t understand why Chalson and his friends and family have made such a “big deal” of what he did, and he hopes more people will sign up on MatchingDonors.com.
“I don’t consider myself a special person,” he said. “I work all day long and try to get home as quick as I can to see my family.”
That’s something, he believes, that describes a good number of people capable of giving a kidney.
CONTACT THE WRITER: 636-0198 or bnewsome@gazette.com
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