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« on: September 10, 2007, 09:28:24 AM » |
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Keeping Living Donors Safe LIVING DONOR COMMITTEE FOCUSES ON STANDARDIZATION
BY KAREN SOKOHL 5July–August 2007UNOS Update
I n 2001, living donation rates surpassed those of deceased donation for the first time. Although not then under the OPTN’s purview, living donation has become increasingly important, and in 2007 the transplant community had another “first.” New federal legislation makes the OPTN responsible for developing policies governing the equitable allocation of living donor organs ― giving the OPTN/UNOS living donor committee new weight in protecting living donors and in standardizing the medical and administrative practices of living donation. The committee developed guidelines for the consent and medical evaluation of living donors, and teamed with the OPTN/ UNOS membership and professional standards committee to create living kidney and liver program certification requirements. Committee members represent a multitude of backgrounds, and ― in another first ― a third are themselves living donors. What follows is a look at the committee from the perspective of a new member and a two-year veteran. Mary Mason, social worker and living donor Mary Mason became aware of the OPTN/UNOS living donor committee after reading a post from fellow social worker and former committee member, Cheryl Jacobs. Jacobs was ending her term and wanted to ensure that social work was still well represented on the committee. Mason was intimately acquainted with the needs of living donors; she worked with donors exclusively at Seattle’s Virginia Mason Medical Center ― and then became a living donor herself in 2004 when she donated a kidney anonymously through a transplant program in Seattle. “Prior to joining the committee, I had not been involved with UNOS,” Mason said. “I had a vested interest, of course, but until then I had no idea how influential I could be within the committee structure.” Having worked in dialysis units for 12 years, Mason met not only transplant candidates but countless donors as well. “I had the benefit of understanding the risks and benefits of living donation,” Mason said, “and I knew what type of follow-up care was required. But I realized that many others in the same situation weren’t nearly as knowledgeable. “A lot of the time donors put their own needs behind those of the recipient. We need a social support system in place to help potential donors understand what they are facing. Informed consent is paramount, and currently there isn’t a standard.” Guidelines vary from region to region, and sometimes even at different centers within a region. Along with standardizing consent, the committee is determined to develop standard medical evaluation guidelines to follow living donors over time. Many donors aren’t aware of what they need to do to maintain their health over the years. Transplant centers aren’t always focused on it either. “But now,” Mason said, “I have the opportunity to be in a room full of people who are committed to the interests of living donors. It’s fabulous!”
Connie Davis, medical director, kidney transplant program As medical director of the large kidney program at the University of Washington Medical Center in Seattle, Davis has taken care of many living donors and was a natural for the committee. “I was concerned about how well living donors were represented in the transplant community, so I developed a personal and professional interest,” Davis explained. Becoming known as an expert, she served on the board of the American Society of Transplantation and attended the 2004 Amsterdam international forum. Davis’ first assignment was heading up the work group to develop standard guidelines for the medical evaluation of living kidney donors. No small task, the committee members collected and evaluated existing medical evaluation protocols from transplant centers with living donor programs. They also reviewed the AST’s recommendations, performed an exhaustive literature review and oversaw a focused survey of 16 large transplant centers. They wanted to make sure the guidelines they proposed were comprehensive and were as close to a consensus as possible. “There are things in the guidelines that some programs may disagree with, but we tried to make it as cutting edge as possible,” Davis said. “We wanted to force people to think about it. We wanted to mention things like 24-hour blood pressure monitors and different forms of monitoring kidney function that aren’t the easy way out ― because it shouldn’t be easy.” She said she would also like to see some of the other important tests standardized, recognizing that location might make some of the tests difficult. “Once we got a sense of how variable things were, we knew we had to make a change,” Davis explained. “Things need to be constructed in a completely different way. If we’re going to do this right we need regional evaluation centers. “This is among the most important things UNOS is doing right now. “We are so grateful to the living donors—these people who are graciously stepping forward at no benefit to themselves. Before they do that, we have to make sure that we have done everything we can to protect them,” she added. “That’s really what we’re here for.”
If you are a living lung, intestine or pancreas donor and are interested in serving on the OPTN/UNOS living donor committee, contact committee liaison Lee Bolton at (804) 782-4757 or boltondl@unos.org. unos.org/SharedContentDocuments/A_Focus_on_Committees_08_07_Update.pdf .............
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