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Who wins, who dies? | page 1, 2, 3

Under that policy, each of the nearly 70,000 people on the nation's master waiting list for transplants is listed with at least one of 60 regional organ-procurement organizations. When a liver is donated in one of those regions, the local organization tries to find a recipient among the sickest patients -- called Status One -- on its list. If no match is found, the organization offers the liver to Status One patients in neighboring organizations that have sharing agreements with the original agency. If still no matches are found in Status One, the local procurement group moves down the list in its region, trying to identify a match with a less critically ill patient.

The approach, says UNOS, is based on established science and allows the sickest patients to get the organs they need (patients in Status One will die within hours if they don't receive a transplant) while also providing transplants to some less critically ill patients, who may stand a better chance of accepting organs and surviving long term.

But HHS disputes both the efficacy and the equity of the UNOS approach.

The problem, says Nelson, comes in areas where local transplant organizations do not have sharing agreements with neighbors. If a liver is recovered within a few miles of a Status One patient, but that patient has the misfortune to be listed with a different procurement organization, that patient may be passed over in favor of less critically ill people on the "right" list, Nelson says. The local organizations and regional alliances are, in effect, fiefdoms that have great sway over whether an organ leaves their jurisdiction.

In the case of donor livers, Nelson says, "What I want to do is assure some equity in the system." If a Status One patient is a good candidate for transplantation, the liver shouldn't go to someone who is a Status Three, Nelson says.

Health and Human Services made that case in 1998, when it first attempted to change the rules for organ transplantation. That proposal, which would have required organs to go to the sickest patients first, largely regardless of geography, were met with massive outcry from UNOS and others in the organ-transplant community.

Rosenker bristles at the suggestion that UNOS policies "waste" viable organs on fairly healthy patients. "Nobody is on that list because they want a new lung, a new heart or a new liver because it is a kind of nice thing to do. You go on this list because you need an organ or you are going to die," Rosenker says.

World-renowned centers such as those at the University of Pittsburgh and the University of California at San Francisco supported the proposed changes. But UNOS and other centers opposed the rule, claiming that the feds were moving to centralize organ procurement and transplantation, and squeeze physicians and local networks out of the process.

Congressional opponents of the rule tied it up in moratoriums until last month, when HHS instituted an amended rule.

The new rule backs down somewhat from the "sickest first" requirements of the initial draft, which even HHS now concedes were not entirely practical. Regional concerns do need to come into play, Nelson says, because the ischemic time of a human liver -- the time it can live outside the body -- is only about 10 hours. But the new rule requires UNOS to establish policies aimed at broader organ sharing, and it gives Shalala final say over those policy decisions.

While UNOS and others in the transplant community have portrayed HHS as wanting to ship organs thousands of miles across country to the absolute sickest patients, Nelson denies the charges, saying that HHS simply wants to make the system more fair. "There are certainly a lot better ways of doing it than using a state boundary," he says.

But many of the people closest to the transplantation debate say that equity shouldn't be the only consideration. Donna Wright, a UNOS employee and liver transplant recipient, says that "justice needs to be balanced with utility."

"Fairness resides in getting the most number of people transplanted and giving the most life years" to those patients, she argues. If that means facing the unpleasant reality that organs aren't always best used in the sickest patients, so be it, Wright says.

. Next page | Waiting for a liver, with only a few hours to live





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