The agonizingly frustrating process of linking organs with those in need has led to calls for all types of reform.
Some believe in financial incentives to increase the donor pool. Many individuals have gone to great lengths, from Internet advertising campaigns to posting billboards in their home towns, to find their own donors and bypass the established national system.
A recent Los Angeles Times investigation found the national system--under the umbrella of the United Network for Organ Sharing--broke down in some cases, allowing several transplant centers to continue operating even after patients were dying at alarming rates. And that system, which divides potential transplant recipients and donors into geographical regions, allows for a variation in wait times.
For example, New Yorker Frank Evanac moved to join a liver transplant waiting list at St. Luke's Hospital in Jacksonville, Fla., according to a Times story. The New York area has some of the longest wait times in the country, while the Florida hospital's are as short as six weeks. Evanac was on the organ transplant waiting list for four years in New York, and for 14 days in Florida.
Dr. Timothy Pruett is president-elect of the board of directors of the United Network for Organ Sharing, the group that oversees the nation's entire transplant system. He acknowledges problems with the system but defends it as one that, overall, works well considering that individuals are making decisions about which dying people get organs first.
Also, said Pruett, "there aren't enough organs from people who die to meet the needs of those who need transplants."
Efforts to improve organ donation registries have had mixed success. Georgia once gave organ donors a discount on their driver license renewal fee, but lawmakers repealed the measure in 2005, citing a tightening state budget.
Wisconsin's move to give tax breaks to organ donors was met with praise, and a handful of states have passed similar measures. But groups including the Institute of Medicine argue that offering any financial incentive to increase organ donation is unethical.
A group called LifeSharers has about 6,200 members in a network whose members promise their organs to one another. But the arrangement has drawn fire from those who believe it could undermine efforts to give organs to those in the most critical need.
Hospital staffs work to ensure that everyone on the waiting list is treated equally, regardless of insurance status or other factors. But some aspects of the national organ transplant system can add to the delay, said April Ashworth, transplant coordinator at Virginia Commonwealth University Medical Center in Richmond.
For example, the United Network for Organ Sharing sets strict guidelines on liver transplant patients' MELD (Model of End-stage Liver Disease) scores. A patient could be very ill, but if his liver function were higher than that of another patient on the waiting list, his name would be farther down on the list.
"Sometimes, that system fails because you have patients who are sicker than what your scores are saying," Ashworth said. And in cases like that of Fredericksburg's Mary Dalseide, if an infection takes over, a patient can suddenly become too sick to survive a transplant.
Pruett, who expects to testify before the U.S. Senate soon about oversight of the nation's organ transplant system in light of the L.A. Times' revelations, said other countries use the United States' organ transplant system as a model.
What's good about the U.S. system: People working in the transplant community police one another and set policy on transplants. What's not always good: The oversight process is largely confidential.
"I think the process works remarkably well," Pruett said.
But, he added, "We recognize the fact that there's been a hit on public confidence. As a doc, that really bothers me."
DONYA ARIAS is a freelance writer who lives in Stafford County. Once a daily newspaper reporter specializing in health and medical writing, Donya Arias regularly contributes to many health-related publications, including the American Public Health Association's newspaper.