The Times reminds us why they are the greatest paper in the world with a fascinating account of kidney donation chains.
To illustrate with a simple example - John would be delighted to donate a kidney to help his daughter Sally, but he is not a good genetic match; Martha would be delighted to help her cousin Bill, but they don't match either.
However! If all four people register with the National Kidney Registry, they may discover that John is a match for Bill and Martha is a match for Sally, in which case, everyone wins. Using high-tech computer skills, the NKR team puts together much longer daisy chains:
As a dawn chill broke over Chicago on Dec. 20, Mr. Terry received a plump pink kidney in a transplant at Loyola University Medical Center. He did not get it from Mr. Ruzzamenti, at least not directly, but the two men will forever share a connection: they were the first and last patients in the longest chain of kidney transplants ever constructed, linking 30 people who were willing to give up an organ with 30 who might have died without one.
What made the domino chain of 60 operations possible was the willingness of a Good Samaritan, Mr. Ruzzamenti, to give the initial kidney, expecting nothing in return. Its momentum was then fueled by a mix of selflessness and self-interest among donors who gave a kidney to a stranger after learning they could not donate to a loved one because of incompatible blood types or antibodies. Their loved ones, in turn, were offered compatible kidneys as part of the exchange.
Chain 124, as it was labeled by the nonprofit National Kidney Registry, required lockstep coordination over four months among 17 hospitals in 11 states. It was born of innovations in computer matching, surgical technique and organ shipping, as well as the determination of a Long Island businessman named Garet Hil, who was inspired by his own daughter’s illness to supercharge the notion of “paying it forward.”
This is an inspiring feel-good story, which is fine, since public awareness and support makes this networking effort even more successful, so the Times does not poke at a couple of questions that might break the mood. But here we go:
1. Hey, those one-percenters are good for something! Let's hear about the founder:
Garet Hil and his wife, Jan, may never fully recover from the snowy night in February 2007 when they took their 10-year-old daughter in with flu symptoms and emerged with a shocking diagnosis of nephrophthisis, a genetic kidney-wasting disease. They could not imagine sacrificing her youth to dialysis.
Because Mr. Hil and his daughter shared the same blood type, he assumed he would be able to give her one of his kidneys. But two days before surgery, doctors canceled the operations after discovering that his daughter had developed antibodies that would most likely cause rejection.
Jan Hil and six other family members volunteered but were also ruled out. Mr. Hil and his daughter joined several of the registries that had started to arrange kidney exchanges, but the pools were small and they never found a match. Fortunately, one of Mr. Hil’s nephews then was tested and was able to donate.
After the successful transplant, Mr. Hil, a veteran business executive, could not shake his frustration that a more effective registry for paired kidney donation did not exist. “The exchange systems out there weren’t industrial strength,” he said.
By the end of 2007, the Hils had formed the National Kidney Registry and rented office space in an old clapboard house in Babylon, N.Y. The couple invested about $300,000 to start it, and Mr. Hil, who is now 49, ran the registry without a salary.
“The goal was very simple: get everybody transplanted in under six months if you had a living donor,” he said. “One of the things that drove us was the enormity of the problem. The other thing that drove us was that we understood the pain of being in that situation.”
Mr. Hil turned out to be the right person to infuse the budding science of kidney exchange with an entrepreneurial spark. A former Marine reconnaissance ranger with an M.B.A. from the Wharton School, he had managed a series of data and logistics companies in Boston and New York and understood the worlds of both computing and finance.
He had made his money and could step off the career track to give the registry his time and the resources of his software-consulting firm. He had a background in quantitative math and enough drive to plow through medical texts about organ compatibility. Over time, he led a team in designing sophisticated software that evolved to build ever-longer chains.
Disney-hero handsome, with a cleft chin and thick wavy hair, Mr. Hil marketed his registry to hospitals with PowerPoints and passion. The transplant world initially regarded him as an interloper. But he has now persuaded 58 of the country’s 236 kidney transplant centers, including many of the largest, to feed his database with information about pairs of transplant candidates and their incompatible donors.
They aren't kidding about the handsome, based on this pic from the organization website. Left unexplored - how did he accomplish all this without a Federal program or Congressional hearings?
Apparently competition is maybe not so bad - from a year-old story about an earlier chain we glean this:
Last fall, the United Network for Organ Sharing, an organization that oversees the nation's organ and transplant network, finally began its long-awaited pilot program that will attempt to do just that and link all of the eligible patients from the nation's more than 200 transplant centers.
But Garet Hil, founder and president of the National Kidney Registry in Babylon, N.Y., which organized the 32-person chain, said UNOS's pilot program "is a failure."
Mr. Hil, who runs a consulting and software development company, sits on the Kidney Paired Donation Pilot working group that has been trying to make the program work.
"I've witnessed a program with a flawed design, working in a bureaucratic way that's not going to get many people transplanted," he said Friday in a phone interview. "The program has been out since October and it's only done two transplants and we've done 60 since then -- including this chain" of which UPMC was a part.
He argues that his registry -- which he started three years after enduring struggles to get his 10-year-old daughter a kidney transplant -- is already a truly national program because it represents 55 transplant centers that collectively do about two-thirds of all transplants in the United States.
Eventually, he hopes, his registry will become the official national program.
"The transplant centers are going to vote by joining the registry," he said, noting that UPMC signed on with the registry late last year.
He has a host of criticisms with the pilot program, including that it allows only small chains that would give just two or three people new kidneys at a time, while the National Kidney Registry runs chains, like this recent one, where dozens of people get new kidneys.
Ken Andreoni, an Ohio State University transplant surgeon who chairs UNOS's kidney committee, has heard Mr. Hil's arguments and concerns before and he believes he's just being too impatient.
"I'm in this for the 50-year- and 100-year-long issues," he said, adding that they will take time to solve.
He concedes the pilot program is slowed by the bureaucracy of having to follow rigid rules that aim to maximize successful transplants and minimize risk.
But that's the price you pay when you're creating what is to be a real national program that answers to everyone, unlike Mr. Hil's registry.
50 years? What's the hurry?
Finally, these chains are often launched by Good Samaritan donors. Should we pay volunteer donors? This very tricky question is tackled in The Lancet.