Web site has live donors for those who need organs

When Kathy Lee found out her kidneys were failing, she turned to her doctor for help and her family and friends for support.

But the medicine Lee's doctor prescribed to halt the deterioration of her kidney function didn't work. And while some of her friends and family were willing to supply a kidney, they weren't suitable donors.

Then Lee turned to www.matchingdonors.com.

She had heard about the Web site from friends; it connects people in need of organs with those willing to donate them. Rather than go on dialysis or join the more than 90,000 people on the national list waiting for an organ from a deceased donor, she decided to join the subscription Web site to find a live one.

She met Billy Gibby within the week.

Gibby, a 25-year-old amateur boxer from Alaska, and Lee, a clinical researcher in San Diego, communicated by e-mail and phone for eight months. He told her of his desire to help someone in need. She asked him if he was sure about undergoing surgery - he wouldn't be paid and would face some health risks.

He was sure. In May, Gibby gave Lee one of his kidneys.

MatchingDonors has been connecting strangers for two years now, leading to 17 successful organ transplants. It's the first and only Web site to coordinate living-organ donations, an unusual approach that has garnered praise and scrutiny.

Some see the site as an innovative way to address a national organ shortage, while others view it as an unregulated process that undermines the traditional system.

For decades, transplants involved organs primarily from deceased donors. A national system, managed by the United Network for Organ Sharing, connects available organs with people who need them. When an organ from a deceased donor is found, a computerized system generates a list of possible patient matches ranked by a number of criteria such as blood type, time on the national waiting list and proximity. The organ is then offered to the person at the top.

The system is imperfect; the number of donors every year is a fraction of the number of people waiting for a match. The federal government estimates 17 people on the list die every day.

As an alternative, living-organ transplants have become increasingly popular. In 2005, there were nearly 5,800 such transplants, according to the organ-sharing network.

A donor can give one of the kidneys or a segment of a liver, lung, pancreas or other organ. The function of a living organ lasts several years longer on average than that of a transplant from a deceased donor.

So far, all the organ donations coordinated by MatchingDonors have involved kidneys, by far the most common type of transplant.

The vast majority of living-organ transplants are between people who know one another. However, patients seeking surgery who have no matches have generally been limited to putting their names on the national wait list.

Federal law prohibits the sale of organs. Some hospitals have altruistic programs, which allow a donor to give an organ anonymously to the next person waiting for surgery at their facility. But there's no standard national system to connect willing live donors and recipients.

MatchingDonors is the closest thing. The organ-sharing network has considered creating a similar system, but the idea is still under discussion.

"We really had no idea if this was going to have any effect on helping people," said Jeremiah Lowney, an internal-medicine physician and co-founder of the site. "We were surprised to get more donors than recipients."

More than 2,700 people have signed up as potential donors and 120 as potential recipients, according to the site. Donors register for free and recipients pay a fee, which is used to maintain the site. The fee is routinely waived for financial need or emergency cases.

Potential recipients pay anywhere from $99 to $595, depending on the length of the membership, to access the site, then post a profile and search potential donors.

The Boston-based Web site doesn't advertise, instead relying on word-of-mouth and Internet searches.

MatchingDonors said patients are typically contacted by potential donors within the first week. Most of the matches were complete within nine months, and all surgeries have been successful.

To Lee, MatchingDonors seemed like a pragmatic next step. For Gibby, it was a way to help another human being. But for some members of the medical community, it poses a complicated ethical dilemma.

There are no official standards for handling living-organ donations, though the organ-sharing network has issued recommended guidelines. As a result, the vetting of living-organ transplant donors and recipients is up to individual doctors and transplant centers.

Dr. Robert Steiner director of transplant nephrology at the University of California San Diego Medical Center, said counseling is a crucial part of any living-donor process. The burden is on the medical staff to assess a patient's motivation, physical health and emotional fitness for such a donation.

Emotionally, donors face the risk of resentment and depression if the surgery isn't successful or complications arise. Physically, they face a number of risks inherent with surgery and associated with the loss of all or part of an organ.

Kidney donors, for example, can live a healthy life with one kidney but face possible postoperative bleeding or kidney disease.

"Everyone assumes everything is going to go fine, and when it doesn't, that is when things start to unravel," said Dr. Robert Truog, a professor of anesthesia and medical ethics at Harvard Medical School.

Addressing the issue of donor motivation is uniquely challenging in Internet matches. Some people simply want to help others, some have lost a relative to organ failure, and others are driven by different ideas. The extreme nature of the act sometimes appeals to people for the wrong reasons, including those struggling with mental illness, who aren't suitable for surgery.

Lee and Gibby were the first Internet-matched transplant pair for UCSD Medical Center. The hospital's ethics board closely reviewed the case and required Gibby to travel from his home in Anchorage to meet with the transplant team, then return home and consider his decision, before it would agree to the surgery.

The board determined that Gibby's interest was sincere.

He had long donated blood, then began donating platelets. But because he could only donate a limited number of times a year, he wanted to do more.

"I started reading about all the people on the waiting list," Gibby said. "If I could just help one person, that's one person who is on the waiting list that might not die."

Some hospitals have changed their policies on people who met via the Internet since the creation of MatchingDonors.

"People are coming around," UCSD's Steiner said. "It doesn't depend so much on how you meet; it matters what happens after that."

But some physicians contend that MatchingDonors undermines the traditional system. The site doesn't provide organs based on medical need, so patients with the best story or prettiest face might be favored. Also, people without Internet access or who aren't computer-savvy might not be able to participate.

"We have a situation where we are rationing organs, and in that situation we have to do what is best and the fairest for everyone," said Doug Hanto, chief of the division of transplantation at Beth Israel Deaconess Medical Center in Boston and former chairman of the ethics committee for the American Society for Transplant Surgeons, who has spoken out against the site. "We've all decided to participate in this and abide by the rules of UNOS to be fair to everyone."

Some surgeons and hospitals have refused to conduct Internet-matched transplants. In one case in Colorado, however, a surgeon relented under intense pressure and the hospital granted a "compassionate exemption" to its policy to permit the surgery.

The site's proponents say it shortens patients' wait time, removes people from the national waiting list and increases interest in organ donation.

"The way the system is working right now is failing," Lowney said. "We're bringing new people to the list."

MatchingDonors is just part of an evolving ethical debate over transplants, said Truog, the Harvard Medical School professor.

Initially, all transplants were restricted to matches between family members because in those cases the donor's motivation was clear, Truog said. But then the argument arose that people with an emotional connection also might be willing to take the risk, so friends and family became eligible.

But as more patients suffered waiting for a donor, some doctors started to argue that any willing donor should be considered.

"It's a little bit of a slippery slope here," Truog said. "Why is it important that they've known each other for years? What if they've known each other for weeks?"

Patients have long found creative ways to find donors, turning to their churches, workplaces or chat rooms. A few take their struggle public through Web sites, billboards and advertising campaigns.

Truog said what MatchingDonors has done is change the scale of the search, allowing patients to reach the entire Internet community. Because of this, the Web site has brought some of the issues surrounding living donation to the fore.

MatchingDonors was started by Paul Dooley and his physician, Lowney. Dooley's father had died waiting for a kidney transplant, and when he told Lowney about the experience, they decided to combine their skills to launch the site.

Using Dooley's experience running a job board that matched employers and employees, they created a similar format to connect donors and recipients.

MatchingDonors said it uses all the fees it collects to maintain the site but that it loses money monthly. However, because the company only registered as a nonprofit several weeks ago, proof of its financial background is unavailable. The company declined to show prior tax returns.

Federal law prohibits anyone from profiting from organ donation, which is clearly posted on the MatchingDonors site. Some visitors have tried to get patients to pay them, but the company asks such people to stop or leave the site.

Patients are responsible for finding their match, contacting the transplant center, coordinating necessary testing and surgery.

MatchingDonors has made arrangements with some airlines that provide free tickets for donors, but the cost of the surgery is the patient's. Lee's insurance paid for the surgery.

The process is complicated, said Lee, who worked with more than a dozen possible donors before whittling down her choices.

Lee and Gibby's surgery was successful, and both recovered quickly. Gibby even won a footrace within months of his surgery.

Although some recipients might choose not to talk to their donor after surgery, Lee and Gibby have remained friends.

"I think about what he (Gibby) did and I still get teary-eyed," Lee said. "Billy is a hero. There are a lot of bad things people do to each other. What can be bad about having MatchingDonors.com?"