Lack of Unified System Hampers Kidney Transplant Efforts
By KEVIN SACK
Published: February 18, 2012
Many of the most prominent names in the field of kidney transplantation agree that the way to maximize the number of transplants through paired exchanges is to create a single, nationwide registry. That, they note, would vastly expand the pool of potential matches among transplant candidates who have willing but incompatible donors.
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.”
The paired exchange registries have fought the perception that kidney swaps unfairly steer the benefits of altruistic donations to transplant candidates who have willing donors. A Good Samaritan who wanted to give a kidney to a stranger could otherwise donate to someone on the waiting list for a deceased organ, although doing so would not start a chain. The wait for a deceased kidney can take years, and they typically do not function as well or survive as long.
There is a racial dimension because African-Americans, who have high rates of kidney disease, are underrepresented among those with willing donors and overrepresented on the waiting list for cadaver kidneys. Researchers point to a variety of possible reasons: lower incomes, lower rates of insurance coverage and less access to high-level care; fewer suitable donors because of the prevalence of diabetes and hypertension; and perhaps a cultural reluctance to ask family members to donate.
In the record-setting transplant chain completed in December by the National Kidney Registry, 2 of 30 recipients were black, compared with a third of those on the deceased donor waiting list.
The registries argue that every live donation shortens the wait list and thus indirectly benefits those seeking a deceased organ. Some registries end chains by donating the final kidney to someone on the wait list.
Kidney chains are new enough that doctors and mathematicians continue to debate their ideal length. Ethicists like Dr. Bramstedt caution that safety must not be compromised in the quest to build ever-longer chains, say by making matches that risk rejection.
A related question concerns the handling of so-called bridge donors, who may be required for scheduling reasons to donate weeks or months after their loved ones have already received transplants.
The longer a bridge donor waits, the higher the risk that he or she will renege or develop a disqualifying medical problem. Over its four-year history, 7 of the National Kidney Registry’s 174 bridge donors have backed out, although none did in 2011.
Some argue there should be time limits for bridge donors, followed by a requirement that they donate to the waiting list. This would ensure that the bridge donor’s kidney finds a needy recipient, even at the cost of ending a chain.
Authorities on transplantation also see a need for uniform standards for screening Good Samaritan donors and for making sure that all donors consent freely, do not receive compensation and get appropriate medical care. They worry that people who are asked to donate for a chain are particularly susceptible to coercion because the number of potential beneficiaries may make it difficult to say no. And they debate how long live kidneys should be transported, and whether registries should charge fees.
Groups like Mr. Hil’s answer to no one on questions like these, although he does consult regularly with a respected medical board for guidance.
Many transplant surgeons, nurses and coordinators believe the clear answer is to create a single registry controlled by the United Network for Organ Sharing, the nonprofit group that manages the deceased donor waiting list for the federal government. But they also acknowledge that the network is slow-moving and deliberative in an entrepreneurial world.
Its paired exchange pilot project has arranged but 17 transplants since late 2010, and it runs its matchmaking software only once a month; Mr. Hil’s registry, which makes match runs five days a week, tallied 175 transplants in 2011.
Richard Durbin, director of transplantation with the Health Resources and Services Administration, said the agency had made no decisions about establishing a single government-run agency.
Mr. Hil suggested there was no need to build a single group, because he had already done so. “We have a national pool,” he said. “It’s called the National Kidney Registry.”
http://www.nytimes.com/2012/02/19/health/lack-of-unified-system-hampers-kidney-transplants.html?_r=1&pagewanted=all
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