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Publicity campaigns seeking organ donations raise ethics questions
Wanted: organ solution
Monday, August 23, 2004

As the number of patients who die waiting for organ transplants continues to grow, more families are taking the quest for an organ into their own hands, and raising tough ethical questions in the process.

The most recent example came earlier this month when a Texas man received a liver transplant after publicizing his plight through billboards, e-mails, a Web site and an extensive media campaign.

Todd Krampitz, 32, of Houston, suffered from a liver cancer so extensive that it was unlikely he would ever rise to the top of the waiting list for an organ. Left with no alternative, Krampitz's friends and family publicized his plight and, less than two weeks ago, a donor family requested that their dying relative's liver go to the Texas man.

Called a "directed donation," these donations are both legal and unusual when they come from cadaveric donors. But the nascent trend had prompted ethical questions months before the Krampitz transplant.

In June, the United Network for Organ Sharing passed a resolution to look at the phenomenon of public solicitation for organs, noting that it poses enormous potential problems.

"It undercuts the ability of the system to get organs to those most in need and who have the best chance to survive," said Art Caplan, a bioethicist at the University of Pennsylvania. "It's not fair because it gives priority to people who can get attention."

The fairness problem at the heart of almost all transplant discussions, including this one, is the mismatch between the supply of donated organs and the demand from those who need transplants.

As of July 30, more than 86,000 people in the United States were awaiting organ transplants, including 5,872 people in Pennsylvania, according to the Center for Organ Recovery and Education, the O'Hara-based group responsible for organ donations in the region. In 2002, more than 6,000 people died while waiting for an organ.

Most direct donations involve living donors. A daughter might decide to give part of her liver to her mother, or a church member might donate a kidney to another member of the congregation.

But between July 2000 and December 2002, there were 129 organs that were recovered from deceased donors and directed to particular recipients. Federal law explicitly allows for this option, although some state laws have placed limits on it, said Mark Fox, associate director of the bioethics center at the University of Oklahoma.

In particular, some states have said organs cannot be directed to a race or class of people, but must instead designate an individual. Those changes came after a case in Florida when family members of a white supremacist sought to restrict their donation to white recipients, Fox said.

Fox chairs the UNOS ethics committee, which called earlier this year for a committee to look at the trend of public solicitation for directed donations. The committee was responding not only to stories about individual campaigns, such as that for Todd Krampitz, but also to broader solicitations.

A group called LifeSharers asks that people sign up with the Tennessee-based organization and agree both to donate their organs when they die and direct those donations to other LifeSharers members. In exchange for this, the LifeSharers members get first dibs on organs donated by other members, according to the group's Web site. Another outfit called matchingdonors.com gives recipients the opportunity to tell their stories on the Web in hopes of attracting the attention of a living donor.

A check of Web sites for both groups last week showed three recipient stories being publicized on matchingdonors.com, although LifeSharers indicated that about 2,400 people had become members. Neither program, however, is endorsed by UNOS.

It's unclear how UNOS would handle a situation in which a LifeSharers member dies and is an eligible donor because it hasn't happened. Dave Undis, executive director of the group, said families were told to contact the group in the event a member can become a donor and get a list of LifeSharers members who are awaiting transplant; currently there are 12 on the group's list. UNOS, however, says a directed donation must be made to a particular person, so it's unclear what would happen if a family tried to direct a donation to that list.

The resolution passed by UNOS in June specifically criticized matchingdonors.com, alleging that there is a fee associated with participation, and thereby exploits a vulnerable population.

An official with the Massachusetts company did not return a call seeking comment.

The ethics committee has been monitoring the public solicitation trend for months, Fox said. One concern is to make sure that no money is exchanged between donors and recipients, which would be a clear violation of federal law.

But Fox said the solicitations raised several concerns unrelated to legality.

First, not all people waiting for transplants have the same financial resources or social skills to mount a public campaign. With a finite supply of organs, an increase in directed donations could unfairly stack the deck in favor of those with the most media skills.

"It's not a level playing field," Fox said.

Second, the insufficient supply of organs available for transplants means there is great debate about how to use the resource. Should all recipients be given equal access to organs, regardless of their own health conditions? Or should emphasis be placed on getting organs to recipients with the best chance for survival?

There are significant arguments over these questions, and the current system for allocating organs is a complicated compromise that tries to recognize all interests. But a directed donation is, in essence, an end-run on this entire process.

Organ recovery groups such as CORE in Pittsburgh must be neutral about any individual's efforts to get a directed donor, said Susan Stuart, executive director of the group. Still, Stuart said, she recognizes the broader concern.

"If we had many recipients take out these types of campaigns and start to solicit for organs though directed donation, it would take us away from assuring that the list is followed so that the sickest patient with the greatest possibility for success would be considered first through the allocation process," she said.

A patient awaiting a lung transplant at the University of Pittsburgh Medical Center this spring initiated a media campaign in her native New York and in Pittsburgh to seek a directed donation. But the woman died before a donor could be found, according to a UPMC spokeswoman.

Members of the Krampitz family say they wouldn't be surprised if others followed their example.

Krampitz was leading an active life before he suddenly became ill in May. He had recently married his high school sweetheart and was running his own digital photography business when he was diagnosed with liver cancer.

His wife, Julie, convened a group of friends and family to brainstorm about what to do, said Krampitz's brother-in-law, Jim Buchanan. They started with an e-mail campaign in search of a donor, and created a Web site describing his life, family and needs.

They were "grasping at straws" when they decided to erect a billboard Aug. 6, Buchanan said. But the publicity ploy worked. A television station saw the billboard and started covering the story, which was picked up outside the Houston market.

The family of an out-of-state donor directed the donation to Krampitz on Aug. 12.

In making their appeals for Krampitz, the family was always careful to make a broad request for people to donate organs, Buchanan pointed out. In that way, the effort probably has helped not just Krampitz, but also others awaiting organs, he said.

Fox, the bioethicist, echoed both sentiments, saying the Krampitz family was very responsible in the way it made its appeals.

"It's really tricky because there's clearly the potential for a lot of good to come of it," Fox said. "It puts a human face on the need for organs for transplant, it educates people and it may motivate people to at least think about becoming organ donors."

First published on August 23, 2004 at 12:00 am
Christopher Snowbeck can be reached at csnowbeck@post-gazette.com or 412 263-2625.
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