Sally Satel, MD, was a practicing psychiatrist with a long history of scholarly research and policy-making in health care when a diagnosis of kidney failure popped her across the line that separates doctors from patients. Without a transplant or dialysis, the 16 percent of function left in her kidneys wouldn’t last long, and she became one of the 60,000 people in the U.S. waiting for a deceased donor kidney. That was in 2004.
One decade later, there are more than 100,000 people on that list. Last year, according to the National Kidney Foundation, just over 14,000 people received donated kidneys, a number that has remained flat since 2007. About 18 people die every day waiting on the list; another 12 are taken off the list daily because they have become too sick to survive transplant surgery. Satel was lucky - an acquaintance volunteered after others had bowed out - and Satel did receive a life-saving kidney transplant.
We need a transparent, safe and ethical system of exchange
From that unexpected experience, Satel wrote a book, ‘When Altruism Isn’t Enough: The Case for Compensating Kidney Donors,” to highlight the shortage. She also became a vocal advocate for changes in the organ donation system that could improve those increasingly dire numbers. This week, she joined a couple of thousand health professionals and interested others at the 2014 World Transplant Congress in San Francisco and also came here to participate in a Stanford Health Policy Forum on organ donation. She spoke alongside David Magnus, PhD, director of the Stanford Center for Biomedical Ethics, and Tom Mone, former president of the Association of Organ Procurement Organizations.
The forum was hosted by the office of Lloyd Minor, MD, dean of the medical school. “Our Health Policy Forums were created to serve as a platform for experts from Stanford and across the globe to discuss important and sometimes controversial medical topics,” he said in a post-event interview. “Our hope is that fostering dialogue on issues of critical importance to our clinicians and patients will take us one step closer to developing solutions.”
At the forum, moderator/Stanford professor Keith Humphreys, PhD, began the conversation by asking Satel what it was like being on the waiting list. “It was extremely difficult,” she answered. “You’re really put in a position of facing years of dialysis (and the wait for a deceased donor kidney) can be five years. In Los Angeles, it's almost 10 years. The average person doesn’t survive that long.” Asking friends and family isn’t easy either, she said: “You are asking someone to give you a body part.”
Satel has proposed a system of rewards – “not, a check, but some sort of in-kind incentive like a contribution to a charity or a 401k,” she said. “We need a transparent, safe and ethical system of exchange.”
The ethics of such a compensation system is what worries Magnus, who told the audience:
Every time we’ve drawn a line — ‘Here’s what we think is acceptable’ — [it’s] almost always been erased and moved somewhere else… Because of the incessant drumbeat of need, there’s a tendency to move and move the line, and maybe those moves are okay and appropriate, but it makes the slippery slope very, very, very steep. We have had only two absolutes: the rule that prohibits taking organs while people are still alive and the prohibition of payment. Both of these principles are now under attack.
As CEO of OneLegacy, a non-profit that Mone said is the world’s largest organ and tissue recovery organization, Mone suggested a method of donation that already exists, but that could be further promoted. The chains begin with a kidney donated by a live donor who doesn’t have a family member in need but who's willing to donate a kidney to any compatible recipient. In 2009, a Stanford Hospital patient with end-stage kidney disease became part of a chain that included 16 patients, eight kidney transplants, five hospitals and seven days. The wife of the Stanford Hospital patient, whose kidney would have been incompatible for husband, agreed to give her kidney to whomever it would work for — triggering a matching system that found someone for her kidney and an appropriate kidney for her husband.
Mone also wants to see a change in the evaluation of donor kidneys that would prevent wastage of potential organs. “We’ve seen a growing conservatism in the acceptance of organs at transplant centers," he said. "We might not get pristine results but (such rejected organs) could work for a 65-year-old. Not every patient needs 25 to 30 years of life.”
Previously: How can we end the donor organ shortage?, Stanford visiting professor and founder of kidney-exchange program wins Nobel economics prize and One gift saves three young lives