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By Deborah L. Shelton
Of the Post-Dispatch
August 20, 2005
A poster is on display in Union Square as family and friends gather to spread the word about Shari Kurzrok, who needs an emergency liver transplant. Kurzrok, 31, a public relations executive who has run many health-awareness campaigns, was struck with a mysterious illness and doctors say she will die unless she gets a liver transplant within days. (Ron Antonelli) |
The group that controls the nation's organ transplant system is debating a rule to keep patients who advertise for organs from gaining unfair advantage over others. The rule would restrict who could receive organs from a deceased donor.
Amid an explosion in public appeals, a committee of the United Network for Organ Sharing is considering ways to make sure every transplant patient has an equal chance at getting an organ.
The United Network for Organ Sharing manages the nation's transplant lists and oversees distribution of deceased donor organs.
As wait times grow, more and more patients are asking the public for organs - in newspaper ads, on billboards and on the Internet. Those pushing for restrictions fear a free-for-all, with transplant candidates scrambling to avoid the waiting list, soon to top 90,000.
Some transplant professionals say public appeals give patients who advertise an unfair advantage and are attempts to circumvent a system designed to transplant the sickest and most medically eligible patients first.
The debate over how to handle solicitations has been heating up over the last year, fueled by several highly publicized appeals.
Last month, a group working on behalf of a New York City public relations executive was accused of using tactics that had "elements of a coercion campaign" in their search for a deceased donor liver. The tactics included posting fliers in hospitals, allegedly tracking trauma patients in emergency rooms and urging police and emergency medical workers to identify accident victims who might serve as donors.
"This is sad that people feel that they have to do that," said Julia Rivera, spokeswoman for the New York Organ Donor Network, the group that disseminates organs in the region.
"I understand that it comes out of desperation. But our organization has done everything we can to protect donor families. They should be able to make informed decisions without having to feel pressured by anybody."
A spokeswoman for Ogilvy Public Relations Worldwide, which led the campaign, later said the group's efforts probably went too far.
In the current American Journal of Bioethics, Sheldon Zink and colleagues at the University of Pennsylvania Center for Bioethics said recent appeals highlight the potential for exploitation.
Some policies of the United Network for Organ Sharing "enable those on the list with the proper resources to gain an advantage over other less fortunate members, creating a system that benefits not the individuals most in medical need but with the best resources," they wrote.
Erma Ratlif of St. Louis has been looking for a kidney donor for six months on the Internet site, www.MatchingDonors.com. She's been waiting for a transplant since April 2002.
Ratlif says she understands the dilemma transplant officials face. But she thinks patients should be able to find an organ any way they can.
"When you're in that predicament you'll do just about anything you can do," she said.
It's only fair, Ratlif said, for transplant staff members to explain to a donor family why a sicker person might be a better recipient than a person advertising on a billboard. But she said the decision, in the end, should rest with the donor family.
State and federal laws permit families to name a specific person to receive their loved one's organs, a process known as "directed donation." Typically those organs go to relatives. Most transplant professionals say designating organs to immediate family members is acceptable.
But over the years, questions have arisen about where to draw the line.
In 1990 in Florida, the parents of a Ku Klux Klan sympathizer donated his heart, liver, kidneys and pancreas with the stipulation that they be given to white people only. The organ procurement organization agreed to abide by the parents' wishes.
Florida legislators later changed state law to prohibit donation of organs based on a recipient's race.
If the United Network for Organ Sharing decides to establish limits on who can get a directed organ, a change in federal law would be required.
The head of the division of transplantation at Beth Israel Deaconess Medical Center in Boston, Dr. Douglas Hanto, said, "Solicitation favors those who have a compelling story, and those who have financial resources and the opportunity to get the word out."
He believes directed donation should occur only in the context of an existing relationship.
The United Network for Organ Sharing would have to decide which kinds of relationships are acceptable, a sticky matter in this era of nontraditional kinships and friendships.
In their journal article, Zink and colleagues say directed donation should only be permitted between family members, with exceptions decided on a case-by-case basis by the United Network for Organ Sharing. Exceptions might include common-law marriages, domestic partnerships and lifelong friendships. Documentation of the relationship would be required.
Transplant professionals have been divided about how to handle public appeals.
Dr. Mark Fox views it as a double-edged sword.
"Public solicitation puts a human face on the need for organs in a way that abstract data never can," said Fox, co-chairman of the public solicitation committee and associate director of the bioethics institute at the Oklahoma College of Medicine in Tulsa.
"I can tell you over and over again that 90,000 people are waiting and show you graphs with lines going up, and nothing resonates the way an individual's compelling story does. Statistics don't touch people in the same way."
For that reason, Fox is comfortable with generic appeals that seek to raise awareness and motivate people to become organ donors.
"We've seen some very different approaches," he said. "Some have told their story, and said: 'Please donate.' They didn't say: "Please donate to me.' That feels very different."
The United Network for Organ Sharing runs a system that supports 90,000 patients, and it must be fair to all, he said.
"There is a rationale to the way the system works," he said. "It's not arbitrary, and it can't be monkeyed with."
As transplant authorities try to close loopholes that could allow favoritism, others say they merit special treatment.
Members of LifeSharers, for example, pledge to give other members first claim to their organs after they die, although members retain the right to donate to family members first.
Dave Undis, who started the group in 2003, said registered donors deserve preference.
"The people who aren't willing to step up to the plate, I don't think they deserve to be at the top of the waiting list when it's time to decide who lives and who dies," Undis said. "Why should I donate my organs to someone who is unwilling to donate theirs?"
Two years ago he asked the United Network for Organ Sharing to alter its allocation formula to take into account LifeSharers membership. The idea was rejected.
For now, if a member who is eligible to donate dies, the family will be given a list of members to direct organs to. No transplant has taken place yet between LifeSharers members, Undis said.
The group has about 3,100 members in 50 states, including 51 in Missouri and 287 in Illinois.
Some have criticized LifeSharers for being an exclusive club.
Undis says anybody can join, and it's free.
Robert M. Veatch says LifeSharers members are trying to push their way to the front of the line in a way that would unfairly impact others.
"They would so dominate the allocation system that a very low priority person who is member of LifeSharers could take priority over everyone else who is not a member, if you follow their proposal," said Veatch, a professor of medical ethics at Georgetown University.
That would mean that others who already get extra points - children, living organ donors and those who are sicker or have waited longer - would be shoved aside, he said.
But Veatch agrees that people who are willing to become organ donors at death are due special consideration. He favors giving people who sign the back of their drivers licenses extra points if they ever need a transplant.
Willingness to donate should never be the sole factor determining if, or when, someone gets a transplant, Veatch said. The allocation system takes into account factors that are more important than merely registering as an organ donor, such as medical urgency, time on the waiting list and blood and tissue compatibility.
Fox said directed donation threatens the integrity of the transplant system because "it is an effort to circumvent the priorities of the allocation system, which is based on clinically relevant considerations."
"To base allocation on anything else threatens to turn the system into a popularity contest or a contest of who can write the most clever ad copy."
The United Network for Organ Sharing issued a statement assuring the public that Shari Kurzrok, the New York executive who was the focus of the highly publicized appeal, did not get preferential treatment when she got a transplant Aug. 6. The organ procurement organization that provided the liver said it was not a directed donation.
"It is important to emphasize that an established system is in place to help all transplant candidates awaiting organs from deceased donors," the statement said.
"As required by federal law and regulation, this system is based upon established medical criteria and equity - ensuring that candidates receive priority based on their medical need and not on personal characteristics or social status."
Some transplant professionals said a directed donation to Kurzrok would have greatly damaged the public's perception of the transplant system.
Hanto recalled the angry reaction that followed the liver transplant of baseball great Mickey Mantle. Some people suspected he got special treatment.
"I would think the public would feel the same if someone who had a lot of money or fame got a transplant over a lot of other people. If we have directed donation based on solicitation, the public will no longer have confidence in the transplant system, and we'll have a free-for-all. They'll feel the only way they can get an organ is to advertise."
Dr. Stuart Greenstein fears that the system of allocating livers and hearts is at greatest risk of being thrown into chaos. Those patients don't have the option of dialysis to keep them alive, which makes their situation more dire, said Greenstein, a New York transplant surgeon who co-chairs the public solicitation committee.
Surgeons at Beth Israel Deaconess Medical Center have agreed they won't perform a transplant with organs obtained through a solicitation, Hanto said. "We discussed it and agreed as a group that we won't support it. We believe that altruistic donors should be donating to the list, not to individuals."
Hanto said transplant professionals need to do a better job educating the public about how the list works, why it's fair and why people should continue to donate according to the policies in place. Transplantation is not merely a transaction between a donor and recipient, he said, it's a social act that involves surgeons, physicians, nurses and others.
Despite increases in public appeals recently, most patients have not gone public.
Most transplant candidates trust the system, said Arthur Caplan, a medical ethicist at the University of Pennsylvania. The current trend of solicitation is "an outbreak of impatience combined with a me-first attitude," he said.
It's people outside the system who are trying to undercut it, he said. "It's not people on the waiting list saying: 'Let's create our own group.' The people most in need are not abandoning the system."
Reporter Deborah L. Shelton
E-mail: dshelton@post-dispatch.com
Phone: 314-340-8203
Copyright © 2005 St. Louis Dispatch.
This article posted September 18, 2005.