By Rob Stein
Washington Post Staff Writer
Saturday, March 22, 2008; A01
The list of patients waiting for organ transplants, which is widely used to promote organ donations, includes thousands who are ineligible for the operations, according to statistics kept by the national network that manages the allocation of organs.
More than a third of the nearly 98,000 patients on the list at any one time are classified as "inactive," meaning they could not be given an organ if it became available because they are too sick, or not sick enough, or for some other, often unexplained, reason.
Although the need for organs far outpaces the supply, critics say the large number of inactive patients on the list may signal that potential recipients are languishing in limbo too long and that including them could mislead potential donors, recipients and policymakers about the magnitude of the need.
Officials at the United Network for Organ Sharing (UNOS), which oversees the transplant system under a federal contract and provided a breakdown of its waiting list at the request of The Washington Post, defend the practice. Many patients are inactive for only short periods because of temporary complications or other issues that are often resolved, they say.
But critics note that a significant number of patients have been inactive for more than two years and may never become eligible.
"The wait list is dishonest," said Donna L. Luebke, a nurse who said she was rebuked by UNOS officials when she complained about the list near the end of the three years she served on the organization's board of directors. "The public deserves to know the true numbers."
The revelation comes at a time when advocates of organ donation have come under fire for using increasingly aggressive strategies to obtain organs, justifying their efforts by citing the long and steadily growing waiting list.
"Part of the argument for the push to get more people to be donors, and for expanding the types of procedures that we do to get organs, is there's all these people waiting for organs and dying in the meantime," said Joan McGregor, a bioethicist at Arizona State University. "If the number is not accurate, that's giving people the false impression that the situation is more serious than it is. It's deceptive."
The advocates, however, say that there are compelling reasons to keep many inactive patients on the list and that the continuing shortfall in organs overshadows any questions about them.
"Whether it's 75,000 or 100,000, there are still far more people who need transplants than can get them," said Robert Higgins, president-elect of UNOS. "None of this changes the fact that there is a significant number of people who die waiting."
Of 97,772 patients on the waiting list as of Feb. 29, which officials said provided a representative snapshot, 32,014 -- nearly 33 percent -- were inactive.
The proportion of inactive patients varied with the type of organ, ranging from nearly 26 percent of those needing livers to nearly 69 percent of those waiting for a pancreas. Nearly 33 percent of those waiting for kidneys, the transplant most often sought, were inactive.
Most inactive patients had been ineligible for at least a year -- and often for more than two years. More than 55 percent of the patients on the list for hearts, and nearly 49 percent waiting for livers, had been inactive for more than two years. Nearly half of those waiting for kidneys had been inactive for at least a year -- and nearly a third for more than two years.
"I could expect people to be on there for months potentially," said Arthur L. Caplan, a University of Pennsylvania bioethicist. "But more than two years? What's that about?"
No information was available for a significant fraction because they became inactive before UNOS started collecting that information in 2006. In some cases, evaluations of patients' suitability for a transplant were never completed. That was the case for more than 36 percent of kidney transplant candidates.
"This raises the question about whether the transplant centers are doing their jobs," Caplan said. "If I've been on the inactive list for two years, my question is, 'What has been done to either get me on the active list or take me off the list?' "
UNOS officials said it is up to individual centers and doctors to track their patients' status, a position that Caplan criticized as unacceptable. "You can't just sit there and look at those numbers and dump responsibility back locally," Caplan said. "UNOS is supposed to steward those patients."
Higgins acknowledged that "there's probably room to do a better job cleaning up the wait list."
Critics say that overstating the need could have various negative consequences, including undermining public confidence in the system.
"The list is what they use for propaganda. It's the marketing tool. It's always: 'The waiting list. The waiting list. The growing waiting list,' " Luebke said. "It's what they use to argue that we need more organs. But it's dishonest."
The size of the list could be particularly important to people who are considering becoming a "living donor" by donating a kidney or a piece of their lung, liver or pancreas -- a practice that has spurred intense debate over whether such donors are fully counseled about the risks.
Exaggerating the size of the list is also unfair to active recipients, said Luebke, who donated a kidney to her sister in 1994.
"It plays on the psyche of the person who's on the wait list," she said. " 'Am I up against 74,000 or 50,000?' "
But officials defended the practice, saying that patients may become inactive for reasons that do not permanently disqualify them. They may develop an infection that temporarily makes them ineligible, for example. Keeping kidney patients on the list when they are not ready enables them to move up without denying anyone else an organ, they said.
"I don't believe there is any reason to be concerned about this," said James F. Burdick, who heads the division of transplantation at the federal Department of Health and Human Services. "I don't think there's anything that indicates that patients are not getting a fair shake."
Others noted that the size of the list is often used in lobbying efforts to seek funding or to change organ-procurement policies. Donation advocates are campaigning to revise state laws to make it easier to obtain organs in ways some say may sacrifice the needs of dying patients and their families.
"It does help the political cause to push for legislation and policies to increase donor rates to use the bigger numbers," Caplan said. "It's not the accurate and truthful thing to be doing."
Advocates are also pushing a controversial strategy for obtaining organs from patients who are not yet brain-dead, known as donation after cardiac death, or DCD.
"The push for DCD is based solely on the idea that we have a huge disparity of organs," said Gail Van Norman, an anesthesiologist and bioethicist at the University of Washington.
"But if 30 percent of the names are the list are inactive, the data isn't a true reflection."