Some Jumping the Line on Organ Transplants

When Margot MacDougall joined the waiting list for a kidney two years ago, she was told it could be seven years before she got a call.

But last month, the 65-year-old Tiburon, Calif., grandmother and avid tennis player found a way around the long line -- through the Internet.

A day after paying the nearly $600 lifetime fee to post her profile on matchingdonors.com, MacDougall was chosen by a 37-year-old father -- a stranger from San Francisco. The donor, Victor Guerrero, told her he believed she would take good care of his kidney.

“I think in the future that’s the way it’s going to go,” she said of her still unusual approach. “I was shocked so many people out there are willing to do this for someone they don’t know.”

With nearly 90,000 critically ill patients in the U.S. waiting for lifesaving organs from deceased donors -- including more than 63,000 who need kidneys -- death often comes sooner than a match. More than 6,000 people die each year while still on the waiting list, which has been administered for two decades by the nonprofit United Network for Organ Sharing.

A small but increasing number of patients are seeking ways to jump ahead or avoid the line entirely.

“In the last several years, with growth in the waiting list and growth in waiting times, I’ve heard several patients express concern that the system isn’t serving their interests and that they’ll fall through the cracks,” said Dr. Mark Fox, a pediatric specialist at the University of Oklahoma and bioethicist. “I hear patients say: ‘I want to do what’s legal to take things into my own hands to improve my chances.’ ”

Sometimes the maneuvering amounts to a clear ethical breach. In a recently disclosed scandal at St. Vincent Medical Center in Los Angeles, for instance, doctors have been accused of improperly implanting a donated liver into a patient who was 52nd on the regional waiting list, bypassing dozens of people who were more entitled to the organ.

But there are other, legitimate ways of getting ahead, though they are sometimes controversial.

For instance, a prospective recipient might register at multiple transplant centers -- which requires the means to travel at a moment’s notice. Registering at more than one center increases the chances of a match because “local” registrants are given preference when an organ becomes available.

A person also might try to get an organ faster by relocating -- for instance moving to Florida, where waits for organs tend to be far shorter than those in, say, New York.

In addition, a person can leap to the top of the list if the family of a deceased donor directs an organ to that individual and it is a good match. Even if the organ is not a good match and it goes to someone else on the list, the intended recipient may benefit by receiving higher priority for a future organ.

Another approach, for people who are affluent, connected or lucky enough, is to bypass the list entirely.

One of the quickest ways to assure a transplant in the U.S. is to find your own living donor -- a practice that is becoming increasingly common.

In each of the last five years, the number of living donors -- the vast majority giving kidneys -- has nearly equaled or exceeded deceased donors. In 1988, the first year the United Network for Organ Sharing began keeping statistics, about 1,800 living donors gave organs; last year, there were more than 7,000.

Some recipients, like McDougall, seek donations from strangers on the Internet, much as one might seek a romantic partner. Her transplant was the 15th made possible by matchingdonors.com, which began connecting donors with recipients last year.

Other organ seekers buy billboards emblazoned with personal pleas. The colleagues of one New York woman who needed a liver ran a public relations campaign on her behalf.

For those with the resources, international brokers are an option. Some cash-strapped foreign donors are willing to part with a kidney or part of a liver for the right price, although selling and buying organs is illegal within the U.S., as well as many other countries.

One Los Angeles facilitator’s website lists an organ recipient’s out-of-pocket costs for a foreign transplant as $240,000 for a liver, for example, including hospital fees and travel. The site pledges that the organs are from government-regulated programs, not the black market.

Luck sometimes plays a role.”You don’t wait on the system, I learned that myself,” said Mike Jones, 47, who happened to meet the woman who donated her kidney to him at a leadership seminar in Los Angeles. “I do believe that you should have faith in the system and get put on the list but I also feel just because you’re on the list you don’t just stop there.”

People who otherwise might not donate may be inspired by a personal story -- more than by the abstract notion of organs in short supply.

“You know something, I think really and truly that motivation is what makes us human,” said Patricia Abdullah, 57, who donated a kidney to Jones after hearing him say he just wanted to live long enough to see his only child graduate from high school. “I think that human beings are motivated for each other at that deep level -- we don’t want people to die, and if you can do something maybe you will.”

The supply of organs from cadavers is falling further and further behind demand -- only 2% of deceased people are even eligible to donate and half of families who are asked decline. So desperate organ seekers are becoming increasingly inventive.

Consider the example of a transplant candidate who has a willing kidney donor who is not a good match. That person can be bumped up in priority on the list for a cadaver’s kidney if the living donor gives the organ to a stranger instead.

Or, elaborate exchanges can be arranged: If Patient A is in need of a kidney and has a sister who doesn’t match him, the sister can give to Patient B. In turn, Patient B would have a friend who matches Patient A and is willing to donate.

But the drive to gain an edge in the search for an organ raises some uncomfortable ethical issues. Matches for cadaver organs are made by computer based on numerous factors that are more or less objective, including a patient’s need, genetic match, physical size and proximity to the donated organ.

“The prisoner in California gets the heart transplant because he needs it and is first on the list,” Fox said. “It’s blind to whether you’re a saint or a sinner or a celebrity. That’s key to maintaining the public trust.”

Going around the list may give people an edge that has nothing to do with need, some ethicists and transplantation experts say. They worry that perceptions of unfairness could undermine the foundations of organ donation, souring families and potential donors on the very idea.

The possibilities -- and the ethical questions -- have multiplied in recent years as living donors have begun to play a more important role in transplantation.

“The problem becomes in my mind when you [as a potential recipient] set yourself up as worthy of some special consideration as being different from the 90,000 other people on the list -- because you can write more clever ad copy or you’re more attractive or because you’re a Catholic Democrat from Oklahoma,” Fox said. “If you have a computer in your home and speak English, your chance is better. I’d be glad to have friends in marketing. People with money or media savvy benefit. It’s not a level playing field.”

Transplant surgeons and other experts in the field once were reluctant to allow strangers as living donors -- partly because of the risks involved in organ-removal surgeries and partly because of questions about possible financial motives on the part of the donors.

But now many are more open to the idea -- largely because of strong evidence that even a poorly matched organ from a living donor gives the recipient a better chance at long-term survival than a perfect match from a deceased donor.

Recent statements by officials from United Network for Organ Sharing clarifying that they do not prohibit live-donor arrangements involving strangers have been welcomed by advocates of websites helping to link donors and recipients much like Web-based dating sites.

Dr. Jeremiah Lowney, a co-founder of www.matchingdonors.com, said that in the year since the website began matching donors with recipients, the number of transplant centers willing to consider candidates who met via the Internet has continued to grow.

Lowney said his website is helping to save lives by bringing organs into the system that otherwise would not be available.

“More and more transplant centers are realizing that what we are doing could potentially help a lot of people,” Lowney said, noting that his site has registered about 2,000 people willing to give a kidney or part of a liver or lungs to help someone they have never met.

“The reality is that 17 to 18 people die on that list every day, so the current list isn’t really working well.”