"The wait list is dishonest," said Donna L. Luebke, a nurse who said she was rebuked by UNOS [United Network for Organ Sharing] 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."
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?"
"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.