32-person chain nets 16 kidney transplants

[okarol]

32-person chain nets 16 kidney transplants
2 national groups in big competition
Saturday, March 05, 2011
By Sean D. Hamill, Pittsburgh Post-Gazette

The promise of hope -- and life -- from living donor kidney exchange programs was on display yet again Friday.

At a news conference at UPMC Montefiore, Troy Johnson, 36, a systems engineer from Latrobe with two children, beamed with thanks at his mother-in-law, Rita Dolezal, 59, who gave one of her kidneys to a recipient in Wisconsin, which, in turn, made Mr. Johnson eligible to get a matching kidney from a donor in Florida.

"It's difficult to run up to someone and say, 'I need a kidney,' " said Mr. Johnson, who has an autoimmune disorder that can cause kidney failure.

And with his mother-in-law, he never had to.

"We never really talked about it. I just decided to do it," Ms. Dolezal said.

They were part of a 32-person chain overseen by the privately run National Kidney Registry that is the largest such chain ever completed involving a Pittsburgh-area hospital, outdoing one that Allegheny General Hospital was part of last year with 24 people in the chain.

This most recent chain started Dec. 17, 2010, and by the time it ended Feb. 11 it involved 16 donors and 16 recipients at 12 transplant centers in nine states from New York to California. Mr. Johnson's transplant and Ms. Dolezal's kidney removal both took place Feb. 10 in Pittsburgh and both of them are doing well.

Ron Shapiro, the transplant surgeon who performed the surgery on Mr. Johnson, said this 32-person chain run by a private organization proved successful, but, "Ideally, you'd like to have one national program. That would maximize the number of transplants that could be performed."

A national program that could push the number of paired donations from nearly 400 last year nationally to 3,000 or more a year has been the dream for the last half decade. That's significant when 93,000 people are on the national waiting list for kidneys and only about 17,000 a year get transplants

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.

The pilot program has had a difficult time because, first, the patients who have signed on are typically the most difficult patients to match, with significant variables that make them hard to match.

And while UNOS would love to run long chains like the registry, currently it believes that shorter, two- and three-person-paired chains are safer because they're less complicated, Dr. Andreoni said.

He doesn't see it as the competition Mr. Hil does.

"In the end, if you get people off the waiting list, that's great," Dr. Andreoni said, "no matter who is doing it."

Sean D. Hamill: Shamill@post-gazette.com or 412-263-2579.

First published on March 5, 2011 at 12:00 am


Read more: http://www.post-gazette.com/pg/11064/1129864-114.stm#ixzz1Fhl9LSt7

[lawphi]

Good article!  If I recall from the NKR website, it took four or five months to perform their first transplant. I do share and respect Mr. Hils frustration.

Do the groups run the same formulas and take into consideration centers that can desensitize.

UNOS has to run the formula, contact the various centers, arrange for crossmatch, call the center, schedule the transplants and hope everyone is eligible.  We also had to do separate consents for the UNOS program.  I can see some patients not returning consents. 

[okarol]

The hospital near me that does desensitization requires patients to sign an agreement that they will not join any swaps or multiple list. They are working toward creating a non-hostile blood environment that is tweaked specifically to the patient's living donor.

[lawphi]

Does your center try to find antigen matches between desensitization candidates?

Are you required to cease participating once you start the actual treatment with a certain donor or apply to the incompatible program?

[okarol]

Does your center try to find antigen matches between desensitization candidates?

Are you required to cease participating once you start the actual treatment with a certain donor or apply to the incompatible program?

I am not sure I understand your first question.
The transplant center I mentioned is not the one my daughter is working with.
The info I have is from another patient. She was told if she wanted to enter the desensitizing program she could not multiple list. The center doesn't want to invest all the time and energy and have you get the call from another hospital once the PRA is reduced.