Efforts under way to assist living organ donors

Efforts under way to assist living organ donors

Published: Monday, January 17, 2011, 1:59 PM
By Angela Townsend, The Plain Dealer

One of the biggest complaints that living donors and their advocates have is that the federal government has not done enough to ensure the safety or financial stability of people who decide to give of themselves -- with a kidney, part of their liver or lung, or bone marrow -- to a loved one.
The ultimate wish of advocates is for the establishment of a living organ donor registry, mandatory reporting of living donors' health status to that registry by the country's organ transplant centers, and a greater ease in self-reporting by living donors themselves.
Since 2006, when the Department of Health and Human Services directed that living-donor guidelines and policies be created, the United Network for Organ Sharing and the Organ Procurement and Transplantation Network have been working jointly on the task. UNOS, a private, nonprofit organization, is under federal contract to operate OPTN, which develops policy.
"Our mantra is donor safety. That's where we're headed," said Dr. Connie Davis, who heads up the OPTN/UNOS Living Donor Committee.
Davis, co-director of the kidney and pancreas transplant program at the University of Washington Medical Center, said the committee has completed or is actively working on policies affecting living donors, such as standardization of professional requirements to become a living-donor advocate, tracking and reporting medical outcomes of living donors by transplant centers, and financial assistance.
"Physicians are becoming very aware that [caring for living donors] goes beyond the date of donation." Davis said.
Nicole Deming, a bioethics professor at Case Western Reserve University, is one of 10 people chosen to be on the National Kidney Foundation's new Living Donor Council Executive Committee.
"We're identifying certain needs that are distinct from others in the transplant community," said Deming, who also is principal investigator of a pilot project at the Center for Biomedical Ethics at MetroHealth Medical Center. She and an assistant conducted lengthy interviews with 25 living donors for the project, which is studying the living-donor experience.
That information is being organized to explore the positive and negative aspects of being a donor, and what can be done to make the process better.
"There's a myth that donors don't want to share their experiences," Deming said. "The most enjoyable aspect of this research is discovering how diverse and different the stories are."
Among the issues that surfaced was the difficulty in traveling to another city for the transplant surgery. "You have no connection to that community. You can't [easily] go back for follow-up exams," she said.
Deming said she hopes to publish the findings in a professional journal and share the information with the Living Donor Council, which is currently working on a survey on donor aftercare. Her goal is to broaden the study by including more voices in the future.
"It's recognizing that donors have something to say, and that each experience is unique," she said. "As a transplant community, we can learn a great deal from donors."
The Living Organ Donor Network, created in 2000, currently tracks more than 2,000 donors.
"We're starting to look at that data," said Dr. Thomas McCune, medical director of the American Foundation for Donation and Transplantation, which maintains the LODN registry. Those findings will be presented at scientific conferences in 2011, he said.
In addition, LODN also provides optional insurance (for a one-time $500 fee) to living donors to help cover unexpected financial costs. Only six of the country's 260 transplant centers are part of LODN.
McCune said he hopes more will join. "They don't realize that donors pay for their own travel, lodging, child care and lost wages," he said.
"Programs need to say, 'We're going to do right by them.' "

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