Full of nerves,that’s how Aaron Ziegler felt as he walked into the Fergus Falls McDonald’s that hot summer day. The Elk River man took his time ordering a bag of French fries before joining his wife at a table. Across from them sat a man with whom Ziegler had exchanged letters, but the two men had never met. They were perfect strangers, except for one surprisingly intimate link: A year and a half earlier, doctors at the University of Minnesota had transplanted one of Ziegler’s kidneys in the other man’s lower abdomen. ¶ “It’s an odd thing,” says Ziegler, 37. “We had shared so much.” But what was he supposed to say to the stranger whose life he had helped save? ¶ The beneficiary of Ziegler’s generosity, Brett Bodway, from Fargo, also felt awkward. “I just didn’t know how to act,” the 44-year-old says. “It’s nerve-wracking.” ¶ For maybe half an hour, the men talked about the day of the surgery, when they lay unconscious in adjacent hospital rooms, never laying eyes on each other. They chatted about music and movies and Bodway’s desire to write a children’s book. And then, they went their separate ways. “It sort of brought closure,” Ziegler says. “I met this person, and he’s okay.”
“It takes a pretty special person” to give an organ away, Bodway says. “I don’t know if I would be able to do it myself.”
It can be hard to imagine making such a sacrifice. But Ziegler is not the only one who’s done it: Over the past decade, dozens of others have donated kidneys to complete strangers through a pioneering program established by the U of M’s Transplant Center in 1999. The success of the U’s nondirected donor program, the first of its kind in the United States, has led many hospitals, including the Mayo Clinic in Rochester, to launch similar programs.
But the need for donors is quickly outstripping the supply. More than 75,000 individuals are awaiting transplants, according to the Organ Procurement and Transplantation Network (OPTN), which oversees all organ placements in the United States. Public campaigns to promote organ donation have had some success—surgeons performed more than 17,000 kidney transplants in 2006, the last year for which figures are available—but the average wait for a kidney still tops five years.
Sixty-two percent of transplants involve kidneys from deceased donors. The remaining 38 percent come from living donors. But if you can’t find a suitable match among friends or family, you’re probably out of luck: Nondirected donations accounted for less than 1 percent of all living donations in 2006.
That’s a huge problem, says Dr. Arthur Matas, director of the kidney-transplant program at the U of M and past president of the American Society of Transplant Surgeons. But it’s not without solutions. “There are lots of little steps you could take,” he explains. “My personal opinion is that we need to take a big step.”
His proposal? Let people to donate kidneys for money.
Sporting corduroys, loafers, small spectacles, and a salt-and-pepper beard, Matas looks and acts like an unassuming academic as he greets a visitor to his office. The Winnipeg native spends most of his days on the 11th floor of the Phillips-Wangensteen Building on the East Bank of the U’s Minneapolis campus. Piles of papers and journal articles spill across two desks, a table, and the floor, along with bottles of empty Diet Coke and a jar of aspirin. A dozen cactuses line the windowsill. A Led Zeppelin CD plays in the background.
Matas used to work primarily as a surgeon. Now, he mostly does research, writing papers that focus on the long-term health outcomes of organ-transplant donors and recipients. Since his arrival at the U, as a medical intern in 1972, Matas has witnessed dramatic changes in what physicians consider acceptable in transplantation. And he has championed many of those changes. “I tend to be a devil’s advocate,” he says with a smile. “I don’t know what my reputation is. I prefer to think of myself as a seeker of truth.”
The first kidney transplant was performed by surgeons on a Chicago woman in 1950. Ruth Tucker’s new kidney came from a cadaver, and the organ worked for roughly three months before her immune system rejected it. Astonishingly, however, one of her kidneys began functioning again during that interval, and she lived another five years before dying of an unrelated illness.
Over the next few years, doctors had more success with kidney transplants on identical twins: An exact biological match seemed the only way to ensure that the recipient’s immune system didn’t reject the transplant, attacking the organ as it might any other foreign object, like a tumor or virus. Later, doctors figured out how to test blood and tissue types for matches that, if not identical, were suitable enough for transplantation. Drugs became available that suppressed the immune response and prevented rejection. Doctors began transplanting kidneys not only from deceased donors and identical twins, but also from living, genetically related donors, including, siblings, parents, and adult children.
During the 1980s, immunosuppressants and tissue-testing improved considerably. Risks associated with surgery shrank, and doctors began recommending transplants for patients once considered too old or too sick to survive the operation. As a result, the waiting list for kidneys ballooned: People with kidney failure can live for years with the aid of dialysis machines, which remove waste and extra fluid from the blood—the kidney’s natural function. Dialysis is cumbersome and costly, says Matas, but it keeps people alive.
Still, even as the waiting list grew, the number of kidneys available from deceased and related donors remained limited. To meet the new demand for transplants, doctors expanded the donor pool, experimenting with kidneys taken from individuals who were suitable matches but genetically unrelated, such as spouses. “People said to us, ‘Goddammit, why are you making my loved one wait when I can be a donor?’” Matas says. “They pushed us to do it, and lo and behold, the results were as good as with living related donors.” By the 1990s, transplant centers were accepting living donations from recipients’ friends, coworkers, and even fellow church members.
For years, people had been calling the transplant center at the University of Minnesota–Fairview, offering to give kidneys anonymously to those on the waiting list. They had seen handmade requests for organs posted in parking ramps, church bulletins, and even a Perkins restaurant. The answer from the U’s transplant center, though, was always no. “You worry, ‘Why are these people offering to do this? Are they nuts?’” explains Catherine Garvey, a transplant coordinator at the center.
In 1997, however, the U’s transplant specialists got a note from a Texas man that led them to change their policy. The man, Roger, had received a letter from a Minnesotan named Bob, asking for a kidney. Both men were graduates of Boys Town, a Nebraska–based nonprofit that serves at-risk youth, and Bob had sent Christmas letters to every graduate whose address he could find. Even though Bob and Roger had never met, the Texan was moved by the other man’s appeal, and he wanted to help. Could he fly up for a donor evaluation?
Per policy, the center’s staff denied the request and, soon after, they got a livid phone call. “Who are you,” Roger demanded, “to tell me who my family is?”
Matas and his team decided to consider the idea. Reviewing the medical research on the subject, they could find only one published account of a nondirected kidney donation, done in the 1970s. In fact, the mere idea proved so controversial, that Matas and his peers assembled a panel of U surgeons, nurses, bioethicists, nephrologists, psychologists, and lawyers to examine the subject from every angle. The panel met every few weeks for nearly a year.
Some of the panel’s concerns were medical. Although donating a kidney is relatively safe—each year, just 3 in 10,000 people die from the procedure, Matas says, and donors aren’t more likely than nondonors to experience kidney failure later in life—it does involve major surgery and the attendant risks, including excessive bleeding, blood clots, bowel obstruction, pneumonia, and bladder infection. For up to two days following the surgery, donors can’t eat or drink on their own. They can’t drive or lift more than 10 pounds for up to six weeks afterward. It can take more than month before a person is ready to return to work and several months for a donor to feel normal again.
“You don’t realize how much you use your abdomen until you go through something like that,” says Audrey Bergengren, a 26-year-old marketing and communications manager, who donated a kidney to an unknown recipient through the U’s program two years ago. “It’s very, very, very painful.”
The panel’s other concerns were ethical—and vexing. Normally, the value of surgery is based on its potential outcome: Will the patient be healthier or happier—through the reduction of pain, removal of a tumor, delivery of a baby in distress, or unblocking of an artery? “Medicine has tried forever to avoid exposing one person to risk for a benefit to someone else,” says Jeffrey Kahn, director of the Center for Bioethics at the U. “When we do surgery on you to save someone else’s life, the argument falls apart.”
Doctors had reasoned that, for a living donor who knows or is related to the recipient, the risks associated with surgery are outweighed by the emotional payoff of helping a relative, spouse, or friend live a better, longer life. But they couldn’t grasp the idea that some individuals—for personal, religious, or other reasons—could derive the same kind of emotional benefit from donating an organ to a person they did not know. Given the risks, why would any sane, unrelated person volunteer?
Matas and colleagues realized they would need to question their basic assumption: I would never do it, so why would anyone else? Eventually, through interviews, they came to accept that some people are altruistic by nature. “Some are so altruistic, they do things the rest of us think are crazy,” Kahn says. “But that doesn’t make them crazy. We call people like them heroes.”
IF the U was going to let people give organs away to strangers, Matas and the panel decided, there were going to have to be some ground rules. And, as with family members or friends, anonymous donors would have to undergo an extensive battery of medical and psychological tests. Additionally, the program would be completely anonymous. Nondirected organs would go to the first person that was a match on the U’s waiting list. This would prevent discrimination among donors. Additionally, it would safeguard against under-the-table, organs-for-cash exchanges, as outlawed by the National Organ Transplant Act of 1984. The only information given to a donor about the recipient would be age and gender. Even during surgery, every precaution would be taken to prevent donors and recipients from crossing paths: They would check in at different times, be assigned to different wings of the hospital, and their families would wait in different rooms.
With a protocol in place, the team decided to go ahead and bring Roger the Texan in for tests. “This was a major psychological breakthrough,” Matas says. Instead of asking Why? he says, “We were saying Why not?” Adds Cheryl Jacobs, a clinical social worker for the U’s living-donor program, “We knew what we were about to do would raise questions in the whole world of transplant surgery. But we couldn’t find a reason not to do it.”
Roger, the Texan who started the whole debate, was eventually ruled out as a donor for medical reasons. But Matas and the crew had been through a long discussion and had turned a corner. When the next letter came—from a woman in Alaska who wanted to donate a kidney to anyone in need but had been told she was ineligible by 30 other centers because she didn’t have a recipient in mind—the team was ready to act. The surgery, in 1999 at the University of Minnesota Medical Center–Fairview, was a success. Since then, more than 500 people have called to ask about the program and more than 100 have come in for evaluations. Forty-four individuals have made it through the screening and donated a kidney.
A year after its first nondirected donation, Matas published a paper about the procedure in the New England Journal of Medicine. Some experts criticized the article, claiming it was essentially a promotion for an unorthodox practice. But hospitals around the country soon followed the U’s lead in accepting nondirected kidney donations.
Today, there are dozens of places you can go if you want to give a kidney—and some allow you to stipulate, for example, the age of the donor. On the website Matchingdonors.com, people who need organs can post pictures and stories for a fee that ranges from $49 for a week to $595 for life. Potential donors can pick the story that moves them most, from “Just married…Need your kidney,” to “I Love Life! Please help me.” As of January, postings on the website indicated that more than 64 successful matches had been made since its launch in 2004, and more than 40 surgeries were planned for the next few months.
Services like these make many transplant experts uncomfortable. Kahn says they open up the possibility that recipients will secretly pay their donors. Such programs also favor kidney seekers who can pay to advertise, rather than those most in need. A survey of 132 kidney-transplant programs, published last year in the American Journal of Transplantation, found that roughly 30 percent of programs would consider donors who had found potential recipients online or in other public forums.
Theoretically, nondirected donorship expands the pool of kidney donors. In practice, it has done little to increase donations. Of the more than 6,400 kidneys taken from living donors in 2006, just 68 came from nondirected donors. Matas believes that number would increase dramatically if organ donors were compensated for their donations. Would you trade a kidney for, say, $90,000?
Critics decry the idea. Black markets for human organs already exist in such countries as Pakistan, Turkey, and the Philippines, they note, and only the most desperate step up to sell. “Poor people are more likely to donate because they need the money more than rich people,” says Mark D. Stegall, chair of transplant surgery at the Mayo Clinic in Rochester, summarizing the debate. “That’s the biggest concern.”
Middlemen pay as little as they can for organs that sell at high prices. And donors often end up worse off. In a study of more than 300 people who had sold a kidney in Chennai, India, for instance, researchers found that kidneys went for an average of $1,070. Ninety-six percent of sellers gave up their kidneys to pay off debts, researchers reported in the Journal of the American Medical Association in 2002. But most were still in debt six years later, and nearly 80 percent said they wouldn’t recommend that other people sell their kidneys.
What’s more, Americans unwilling to wait for a transplant are often buyers in such markets. Last year, in an interview published in the University of Pennsylvania’s Bioethics Journal, Francis Delmonico, the director of renal transplantation at Massachusetts General Hospital and a professor of surgery at Harvard Medical School, told the story of a New York woman who traveled to South Africa, where she received a kidney transplant that involved a seller from Brazil and a broker in Israel. Experts refer to such practices as “transplant tourism.”
“These markets that sell kidneys are indistinguishable from the markets that exist to sell children and women,” Delmonico said in the interview. “As a society, collectively, internationally, as a people, and as a human race, it is not for us to have members of our society have to sell themselves, in any fashion…. As a transplant surgeon, I find it abhorrent.”
But Matas notes that we’ve already attached price tags to other body parts and fluids. Men sell sperm. Women sell eggs. Surrogate mothers carry babies for other couples. College students sell blood and plasma. And courts regularly award damages for lost limbs. Matas dismisses the concern that putting a price on organs would attract primarily poor people as donors. “What’s wrong with that?” he asks. “It doesn’t feel right, I understand. But poor people can make independent decisions about what to do with their own lives…. If a person makes an autonomous decision after a lot of thought that this is in their best interest and they get something of value to them in exchange, then I’m not sure we should prevent it.”
So how much is a kidney worth? Matas has calculated the value at $95,000, based on the amount that Medicare would save in deferred dialysis costs for a patient. And that number doesn’t factor in improvements to quality of life, Matas says: Other scientists have estimated a kidney’s value at $250,000 or more.
Matas supports a regulated system in which only the government could buy and allocate kidneys. Individuals wouldn’t be able to go out and buy kidneys on their own, so wealth wouldn’t determine who lived and who died. And donors would have to go thorough extensive medical and psychological screenings. Such a system, Matas thinks, would be the best way to squelch what is being done poorly elsewhere: “People say ‘This is terrible—what is happening in other countries—so we shouldn’t do it here.’ The reality is that we should do it here because it is being done badly in other countries.”
For a long time, Matas was a lone voice. Surveys done in the early 1990s showed that just 25 percent of doctors and nurses thought a regulated kidney market was a good idea. (Surprisingly, 70 percent of the general public supported the proposal.) Today, he says, a majority of medical professionals endorse the idea of setting up some kind of trial experiment. Still, the idea makes many people squirm. “I give talks and people stand up and start arguing with me,” Matas says. “I’m the person they line up to throw tomatoes at.”
Meanwhile, altruistic donors in the United States give and give: They not only risk their lives, they also shoulder tremendous costs. The recipient’s health insurance pays for the donor’s surgery and hospital stay (and many transplant centers, including the U’s, offer grants to cover costs associated with transportation, hotel rooms, and childcare), but working donors must secure time off from their jobs—often without pay. Down the line, donors may have trouble getting health or life insurance because they have just one kidney.
“Currently, there are financial disincentives to be a kidney donor,” Matas says. “All of us in transplantation think these disincentives should be removed. The debate is about whether there should be incentives.” The more innovative proposals include tax breaks for donors, health insurance for life, or—at the very least—paid time off from work during recovery. “We should have a way,” adds Kahn, “to not ask people to pay to do a good deed.”
Even those who have donated kidneys for free can see some value in Matas’s arguments. “Honestly, I probably would’ve taken money,” says Ziegler, the Elk River donor. “I have four children that are all going to need to go to college some day. [But] I also think it’s kind of sad that we have to go into capitalistic mode just to get people to live.”
So, would Matas ever step up to give a kidney? He closes his eyes and clasps his hands behind his head. A smile washes over his face. “My wife and I debate this all the time,” he says, his eyes open now. “If the package of incentives were good enough, I would do it.”
Emily Sohn writes about health and science for the Los Angeles Times, Science News, and other national publications. She lives in Minneapolis.