Lack of Unified System Hampers Kidney Transplants

And yet, more than a decade after the first organ swap in the United States, the transplant world remains disjointed, with competing private registries operating with little government oversight or regulation. The federal government started a paired exchange pilot project in late 2010, but it lags far behind nonprofits like the National Kidney Registry in making successful matches.

Whether the disparate groups will join forces is uncertain. But the continuing fragmentation may be preventing potential transplant matches. And it means that a number of sensitive ethical concerns, like ensuring that kidneys are allocated according to universally accepted priorities, could go unsettled for years.

“It’d be best if we could have a master registry,” said Katrina A. Bramstedt, a transplant ethicist and co-author of “The Organ Donor Experience: Good Samaritans and the Meaning of Altruism.” “But there are so many little kingdoms in the transplant world, and I don’t know that we’ll ever break away from that.”

Registry leaders regularly call for a unified system even as they expand their own domains. Some are national in scope, others are regional, and some exist within a single hospital.

“Unfortunately, I’m part of the problem, and I regret that,” said Dr. Michael A. Rees of the University of Toledo Medical Center, whose registry, the Alliance for Paired Donation, put together the first non-simultaneous kidney chain. “Dealing with the egos of transplant surgeons — and I’m one of them, and we all think we have the right way — is like herding cats. It’s such a solvable problem. We just need to work as a single entity.”

In late March, a consortium of medical societies plans to hold a “consensus conference” near Washington to begin the search for common principles, and perhaps a common structure.

“Organs should be seen as a national resource,” said the meeting’s organizer, Dr. Sandy Feng, a transplant surgeon at the University of California, San Francisco, medical center. “And so we should look for agreed-upon principles to guide practice.”

The conference agenda includes discussion about whether there should be a single registry or whether multiple networks might work more effectively because of the logistical challenges posed by chains, Dr. Feng said. If there are going to be several registries, she said, they should abide by the same policies about how organs are distributed.

For example, should more weight be given to making difficult matches for recipients who are particularly prone to rejection, or to achieving as many transplants as possible? Should a patient’s health status or age or time on the federal transplant waiting list be considered? The answers now vary from registry to registry.

“This is organ allocation,” said Dr. Dorry L. Segev, a transplant surgeon at Johns Hopkins Hospital, which has a registry that caters to hard-to-match patients. “They’re deciding who lives and who dies.”

With black-market organ brokers and Internet matching in the headlines, pioneers in kidney-paired exchange recognize that they may be one misplaced shipment or medical mishap away from deeper scrutiny. But they also continue to stretch boundaries.

Garet Hil, founder of the National Kidney Registry, which is based on Long Island, N.Y., said he hoped to attempt a transoceanic swap some day soon. Others have discussed starting chains with deceased donor kidneys, adding magnitudes of logistical complexity.

“It is a little bit like the Wild West,” said Dr. Robert A. Montgomery, another transplant specialist at Hopkins. “There has to be some regulation, and it has to be fair, because if people don’t think it’s fair, they’re not going to donate organs.”

View the original article here

Lives Forever Linked Through Kidney Transplant Chain 124

In February 2011, the desk clerk at Mr. Ruzzamenti’s yoga studio told him she had recently donated a kidney to an ailing friend she had bumped into at Target. Mr. Ruzzamenti, 44, had never even donated blood, but the story so captivated him that two days later he called Riverside Community Hospital to ask how he might do the same thing.

Halfway across the country, in Joliet, Ill., Donald C. Terry Jr. needed a kidney in the worst way. Since receiving a diagnosis of diabetes-related renal disease in his mid-40s, he had endured the burning and bloating and dismal tedium of dialysis for nearly a year. With nobody in his family willing or able to give him a kidney, his doctors warned that it might take five years to crawl up the waiting list for an organ from a deceased donor.

“It was like being sentenced to prison,” Mr. Terry recalled, “like I had done something wrong in my life and this was the outcome.”

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.”

Dr. Robert A. Montgomery, a pioneering transplant surgeon at Johns Hopkins Hospital, which was not involved in the chain, called it a “momentous feat” that demonstrated the potential for kidney exchanges to transform the field. “We are realizing the dream of extending the miracle of transplantation to thousands of additional patients each year,” he said.

The chain began with an algorithm and an altruist. Over the months it fractured time and again, suspending the fates of those down the line until Mr. Hil could repair the breach. Eventually, he succeeded in finding needle-in-a-haystack matches for patients whose antibodies would have caused them to reject organs from most donors.

Until now, few of the donors and recipients have known one another’s names. But 59 of the 60 participants consented to be identified by The New York Times and to tell the stories, each with distinct shadings, that ultimately connected them.

Despite an intensely bitter breakup, a Michigan man agreed to donate a kidney for his former girlfriend for the sake of their 2-year-old daughter. A woman from Toronto donated for her fifth cousin from Bensonhurst, Brooklyn, after meeting him by chance in Italy and then staying in touch mostly by text messages.

Children donated for parents, husbands for wives, sisters for brothers. A 26-year-old student from Texas gave a kidney for a 44-year-old uncle in California whom he rarely saw. In San Francisco, a 62-year-old survivor of Stage 4 Hodgkin’s lymphoma donated for her son-in-law.

On Aug. 15, Mr. Ruzzamenti’s kidney flew east on a Continental red-eye from Los Angeles to Newark and was rushed to Saint Barnabas Medical Center in Livingston, N.J. There it was stitched into the abdomen of a 66-year-old man.

The man’s niece, a 34-year-old nurse, had wanted to give him her kidney, but her Type A blood clashed with his Type O. So in exchange for Mr. Ruzzamenti’s gift, she agreed to have her kidney shipped to the University of Wisconsin Hospital in Madison for Brooke R. Kitzman’s transplant. It was Ms. Kitzman’s former boyfriend, David Madosh, who agreed to donate a kidney on her behalf despite their acrimonious split.

Mr. Madosh’s kidney flew to Pittsburgh for Janna Daniels, a clerical supervisor, who got her transplant at Allegheny General Hospital. And her husband, Shaun, a mechanic, sent his kidney to Mustafa Parks, a young father of two at Sharp Memorial Hospital in San Diego.

On and on the chain extended, with kidneys flying from coast to coast, iced down in cardboard boxes equipped with GPS devices and stowed on commercial aircraft.

View the original article here