Living Donor Advocates for Better Organ Donation Policies
Alumna describes “ripple effect” that changed her life
By Marianne McCarthy
In the midst of working on her PhD in PhD in Human and Organizational Systems, Vicky Young (HOS ’07) made a life-altering decision to donate one of her kidneys to a long-time friend and colleague. While she doesn’t regret her decision, she was unprepared for the personal consequences of the procedure and has since become a powerful advocate for living donors’ voices—a commitment that began with her doctoral research.
A self-proclaimed non-traditional student who preferred independent study, Vicky entered the HOS doctoral program because the Fielding model worked with her style of learning. In 2004, she was struggling with her health at the same time she was working on her dissertation. While refining a completely separate research question, her mentor suggested she study what was already shaping her life—her recent kidney donation.
“I was searching for ways to cure my depression, when I found out that I had very low kidney function,” she says.
Vicky wanted to examine how organ donation affects people, so she based her dissertation research on the experiences of 12 other living donors. As she interviewed her subjects, she realized that they, like herself, felt disenfranchised by the process.
“There are informed consents forms when you go through the process of trying to donate. You’re supposed to be interviewed by a social worker. You’re supposed to have an independent donor advocate. You’re supposed to be told about the possibility of complications, but not everybody has the same understanding of things,” says Vicky.
Four years after donating she was diagnosed with stage 3 chronic kidney disease, which is characterized by moderately reduced kidney function, the most severe being stage 5. Yet, complications like depression and reduced kidney function were never discussed as possible consequences. Because of this, it’s been her mission to get more information into the hands of potential donors before they make that crucial decision as well as to advocate for research on the psycho-social, health, and financial consequences of organ donation.
After working on the Living Donor Committee of the United Network for Organ Sharing (UNOS) for three years, Vicky was appointed in March 2013 to the board of directors. UNOS is contracted by the federal government and is the only organization that oversees the transplant industry in the United States. As a voting member, Vicky will partake in organ transplant policy decisions, such as a proposed policy allowing an HIV-positive donor give to an HIV-positive recipient.
“I’ll try to look at policy issues from the professional manner of being an academic, being somebody who teaches human development, who looks at social systems, and of course, bring in my voice as living donor and the voices of the other living donors that I know across the country,” says Vicky who continues to monitor her lowered kidney function.
Currently a faculty member of Prescott College in Arizona, Vicky weaves her experience into the classroom.
“I try to bring in race, ethnicity, power, privilege, all of those things, and give people examples of disenfranchised and under-represented groups,” says Vicky, adding that Native Americans, Hispanics, and African-Americans in our country have a high rate of kidney disease, often as a result of diabetes. “So we look at socio-economic issues, poverty issues, education issues, all of those things have these ramifications.”
While Vicky remains devoted to ensuring that the voices of living donors are more prominent despite her own health struggles, she has no regrets.
“I’m a spiritual person. Did all of this happen for a reason? It changed my life and changed my direction. It was like throwing a pebble in the pond and getting the ripple effect,” says Vicky. Points of Pride Archive