Surgeons Erik Finger, left, and Rajinder Singh removed a kidney (shown on monitor) from a living donor during an operation at the University of Minnesota Medical Center-Fairview in Minneapolis. In an adjacent operating room, the organ recipient was prepped and waiting for the kidney.
Kidney exchanges use the oldest economic model of all – trade. Computer matching can start a chain of transplants, but the idea has a long way to go.
By Josephine Marcotty, Star Tribune
Last update: October 2, 2009 – 7:00 AM
Melissa Larson sat outside a Minneapolis coffee shop staring at the brochure her doctor had just handed her.
Kidney exchange, it read — a simple phrase for a remarkable idea that could save her life. One altruistic person donates a kidney, triggering a cascade of surgeries across the country, with one donor after another paying it forward in a never-ending chain of kidney transplants. Until, finally, she gets the kidney that’s right for her.
“This is the way I have to go,” Larson said, “and I’m going to take three donors with me.”
For two years the single mother from Monticello has been searching for a donor, a lonely and fruitless hunt that has exposed her to the failings of the nation’s transplant system. An epidemic of kidney disease has created an explosion in demand for organs. But without an organized system to connect patients with willing donors, Larson and thousands of others like her are searching for organs in an unregulated free-for-all.
Now, at last, Larson sees a solution in the works: An ingenious computer matching system that can reach across the country to connect donors with patients and bring hope to many of the 80,000 Americans on the kidney waiting list.
The idea still faces daunting hurdles. It needs buy-in from more of the nation’s 220 transplant hospitals, a broader set of widely accepted medical guidelines for living donors, and financial support from Medicare and other health plans. But with that support, exchanges have the potential to create a national matching system. That could save millions of dollars in the cost of treating kidney disease and end the ordeal of thousands of desperate kidney patients. Including Melissa Larson.
“I call it a revolution,” said Garet Hil, a communications and software executive who two years ago launched the National Kidney Registry, a nonprofit kidney exchange program in Babylon, N.Y. “For thousands out there, this is a way to get a transplant.”
Computer matching
Such kidney exchanges are brand new, but they rely on the oldest economic model of all — trade. Your wife gets a compatible kidney from a stranger, you give a compatible kidney to the stranger’s sister. Two perfect matches — or four or 10 or 100 — are made by a computer that chooses the best medical and geographic combinations.
To date only a few hundred transplants have come about from such kidney swaps in this country, and the four transplant centers in Minnesota are just now getting involved.
The logistics are breathtakingly complex and will never solve the overall kidney shortage. Nonetheless, they illustrate a fundamental shift in the hands-off medical ethic that has limited living donation. For the first time, people desperate for a living kidney donor can get help from nationally coordinated transplant programs.
“There is a need to build a national registry,” said Art Caplan, a bioethicist at the University of Pennsylvania. “We have it for blood. We have it for bone marrow. But we have to have the political will to do it.”
Ick-onomics
The price of admission? A willing donor. For Angie Heckman, it was her mother.
Heckman, a 33-year-old Ohio waitress, had been on dialysis for 11 years when she met Dr. Michael Rees, a transplant surgeon and researcher at the University of Toledo. She thought he would put her on the list for a deceased donor, a five-year wait. Instead, he asked her if she wanted to try something new — a kidney swap.
Rees had first heard of them in 2000. He was so intrigued that he set aside his research on using pig organs for people, and he started building an exchange. His father, a retired computer expert, wrote the first software program for the Alliance for Paired Donation, the exchange Rees now manages.
At the time, exchanges involved only two or three patient-donor pairs, and the transplants were done simultaneously, in one hospital. Surgeons believed it was the best way to ensure that no donor backed out at the last minute, leaving someone in the group without a kidney.
But that severely limited the numbers. For one thing, hospitals could rarely free up half-a-dozen operating rooms at once. Getting donors and patients together at the same time and place also was a logistical high-wire act.
Then in December 2006, Rees spent an hour-and-a-half on the phone with Alvin Roth, a Harvard economist who specializes in matching theory.
Roth has devised many matching programs, including the national system that fits medical students with specialty training centers.
He also studies what has been jokingly described as “ick-onomics” — the economics of repugnance. For instance, most people abhor the idea of selling human body parts for transplant. But trade? That doesn’t usually trigger the same kind of visceral reaction, he said.
Roth, the Harvard economist, convinced Rees, the Toledo transplant surgeon, that if he started with an altruistic donor and did transplants sequentially, then no patient would ever be left in the lurch if a donor backed out. The chain would stop, but all the remaining pairs could still participate in another exchange.
“I could see these chains going on forever,” Rees said.
Chain of donors
Angie Heckman’s chain was Rees’ first.
It began with Matt Jones, a 30-year-old father of five who worked for Enterprise car rental in Petoskey, Mich. He was determined to give his kidney to anyone who needed it.
His first attempt to donate fell apart when the patient unexpectedly got a kidney from the deceased list. But after putting time and money into travel and testing, and persuading his fiancé at the time that it was a good idea, he wasn’t about to give up. He called Rees.
“He tells me, ‘I have this idea of doing a chain,’” Jones said in an interview. “‘It’s never been done. There are some people who think I’m crazy.’
“I said, ‘Sounds like a great idea.’”
Rees’ computer program matched Jones to Barb Bunnell, a 53-year-old Arizona woman. A week after Rees transplanted Jones’ kidney into Bunnell, her husband, Ron Bunnell, was on a plane to Toledo to give his kidney to Heckman. Then Heckman’s mother, Laurie Sarvo, gave a kidney to a woman in Columbus, Ohio.
The chain went on through two more married couples, siblings, a daughter and father and two friends. The last operation came in March, with a 60-year-old woman in Toledo who got a kidney from a Baltimore donor. “I want to turn every altruistic donor into 1,000 transplants, not just one,” Rees said.
Today, there are 200 patient-donor pairs in his pool, and 70 participating transplant centers. Nationally, there are now half-a-dozen large regional kidney exchange pools and several smaller ones.
In March, Rees described his chain in a New England Journal of Medicine article titled “A nonsimultaneous, extended, altruistic-donor chain.” The editors would not let him use the name he likes: “never ending altruistic donor,” or NEAD chain.
Hil, the New York businessman, launched the National Kidney Registry when his 10-year-old daughter couldn’t find a living donor. Eventually, a cousin gave her a kidney, but he saw both the problem and the possibilities, he said.
The number of transplants from swaps and chains is growing exponentially. In July, an eight-way multi-hospital series of transplants was conducted in four states over three weeks. In March, a series of six transplants was conducted at three hospitals around New York in 36 hours.
In Boston last spring, kidney exchanges were one of the hottest topics at the American Transplant Congress, a major international conference. Hundreds of surgeons, nurses and social workers absorbed PowerPoint slides that illustrated intricate webs of matches by race, age, medical condition, genetics and blood type. Instead of presentations on anti-rejection drugs, they learned about software programs.
This year, finally, the United Network for Organ Sharing (UNOS), which manages the deceased organ transplant system, is launching a living donor exchange program sanctioned by the federal government.
“We’ve been doing transplants for 55 years and it took 50 years to figure this out,” said Dr. John Friedewald, a nephrologist and assistant professor at Northwestern University in Chicago. He heads the UNOS kidney exchange committee.
He said that by 2010, there will be several hundred pairs in the UNOS pool drawn from all the major transplant centers.
Perfect symmetry
Transplant centers in Minnesota are just starting to participate in paired exchanges. At the University of Minnesota, there are a half-dozen pairs signed up and waiting in three different pools — the Alliance, the National Kidney Registry, and a small regional pool managed by the Hennepin County Medical Center. The Mayo Clinic works with Johns Hopkins hospital in Baltimore, which houses the oldest and largest exchange program.
“It’s a no-brainer,” said Bryan Erbst, of Marshfield Wis. He is signed up with his son in three pools across the country, and he is looking for more.
His son Jake, 22, has been on dialysis for a year. Jake wants to be a teacher and is struggling to balance college classes with dialysis. Like his father, he thinks exchanges are long overdue, but his reasons are more profound. He got his first kidney transplant at age 17 from a deceased donor, but it lasted only a short while.
“You have to come to grips with the fact that you are waiting for someone to die,” he said. “That’s hard.”
But, like a Harvard economist, he appreciates the perfect symmetry of a swap.
“It’s a mutual exchange,” he said. “It’s not one-sided.”
Herding transplant centers
Although momentum for exchange pools is building, they are still as fragile as the people who make up the links. In one deflating session at the transplant conference, Rees explained step by step how one chain unraveled.
It started with 15 possible transplants at nine transplant centers. By the time everyone was ready to go, the first patient in the chain had died. The second pairing failed because the transplant center rejected the donor’s kidney — it was too small. The third failed because the donor backed out. Four more failed for a variety of reasons. In the end, instead of 15 transplants there were three.
“When I first started, these things broke my heart,” Rees said in a recent interview. “Now I take it as ‘get back to the drawing board.’”
The logistical morass starts with the 240 centers that do kidney transplants. Seventy participate in his pool; others participate in other exchanges. Each has its own medical standards for which donors they will accept for which patients. For example, he said, what if a 60-year-old donor from New York is matched with an 18-year-old patient from Los Angeles? Some surgeons would accept that, some wouldn’t. Some centers will accept only left-side donor kidneys, which are easier to transplant. Some will accept altruistic donors and some won’t.
Slowly, these individual standards are being incorporated into his computer system. But that, plus regularly updating patient status reports, takes cooperation from the transplant centers.
“But I have no teeth,” he said. “I am the beggar asking them to play.”
What about money?
Then there is the potentially fatal problem of money. Insurance plans don’t pay the cost of screening donors. For hospitals, that adds up to thousands of dollars for every potential donor. On top of that, the hospitals lose an average of $100,000 in potential revenue if the donor and the recipient go elsewhere for surgery.
Donors, too, often face thousands of dollars in out-of-pocket costs. The recipient’s health insurance pays for the transplant surgery. But donors have to provide for their own travel to hospitals that might be across the country, and take time off of work for recovery.
Although living donor transplants have the potential to save Medicare tens of millions in dialysis costs, exchanges get no public funding. By and large they are supported by hospital groups, big academic centers such as Johns Hopkins, or, in the case of the Alliance and the National Kidney Registry, charitable contributions. “I have not been able to talk the federal government into this, and it drives me crazy,” Rees said.
He estimates that Medicare could ultimately save $50 for every dollar it invests in paired exchanges.
Hil, who runs the National Kidney Registry, is equally frustrated. “It’s really stupid on Medicare’s part,” Hil said. “If we had funding, we would be doing 10 times as many transplants.”
Many say those logistical problems are simply part of being at the front end of something new, and that exchanges are inevitable. “It’s economically, philosophically and medically the right thing to do,” said Dr. Andrew Singer, director of the kidney transplant program at Johns Hopkins.
Rees hopes the Alliance, which he started with his fathers’ software program and $1.2 million in donations, can hang on until the concept takes off. “If I can’t fund this, it’s going to stop,” he said.
Still on their own
No one expects exchange pools to eliminate the deceased kidney waiting list, which now numbers 80,000. But some predict they could increase the number of transplants by up to 4,000 per year — the same number of people who die each year while waiting on the list.
But in truth no one knows.
By the time Melissa Larson heard about exchanges, she had been on the hunt for two years. She had recruited dozens of possible donors. But for the most part she doesn’t know who they are. She is frustrated because her transplant center, University of Minnesota Medical Center-Fairview, won’t help her find a donor partner for an exchange.
“I brought so many through I ought to be in that pool automatically,” she said.
But that is not how it works. Recruiting a donor is still up to patients.
She now wonders whether finding a donor is beyond her reach. She spends hours a day on dialysis. She is raising two kids, while working part time and juggling huge medical debts.
Now, she has to start all over again.
On her own.
marcotty@startribune.com 612-673-7394
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