Opinion-New York Times-Finding Organ Donors Concealed in Plain Sight
Last June, after it became clear that their 3-month-old son, Nathan, needed a liver transplant, Rob and Christina Whitehead of Mokena, Ill., created a Facebook page to tell his story. Word spread quickly. “More than a hundred people called our donor hotline,” recalled Talia B. Baker, director of the Living Donor Liver Transplant program at Northwestern University Feinberg School of Medicine.
In August, Nathan received a transplant. He’s had some complications, but nine months later, videos show him cruising happily with his walker.
Nathan’s case is not unique. “There have been several instances where people have posted a need for an organ for a baby or an adult and we’ve had a massive outpouring,” Baker said.
Only one of the candidates ended up donating, of course. That left Baker wondering whether the others would be willing to give to someone else. So she asked them. “Almost 100 percent said yes,” she said.
Now she is working with Organize (a group I reported on in my last column) to develop a database of living organ donors who are interested in helping strangers. “It needs to be done systematically, ethically and equitably,” Baker cautions.
If the potential for living organ donation could be realized, it would save thousands of lives each year in the United States. In one poll, one in four people questioned said that they would be willing to donate a kidney to save the life of a stranger.
But in 2015, only 6,000 living people actually donated organs across the country, leaving more than 121,000 people remaining on waiting lists for a transplant. The vast majority need kidneys or livers. Most wait years for an organ; thousands die before one arrives.
Since the 1970s, the field of organ transplantation in the United States has focused primarily on deceased donors. Although 150 million Americans have registered as organ donors, the number of transplants has remained essentially flat for a decade. Today, the focus is shifting.
“Living donation is the area most amenable to change,” said Andrew Cameron, director of liver transplantation at Johns Hopkins Hospital in Baltimore. “It’s minimally invasive and proven safe, the organ you get from a living donor is a better organ, it works right away and lasts longer and, when polled, the majority indicate a willingness to donate.”
It’s an area, however, about which most people still know little. “Picture asking someone for money and how much you hate that and now imagine asking for an organ,” said Josh Morrison, who donated a kidney to a stranger and founded WaitList Zero to promote living kidney donation. “I’m a socially anxious person, and I could imagine how awful it would be to talk to someone, hoping they liked me enough to offer to save my life.”
But what if these conversations could be made easier?
Perhaps they can. In a three-year study led by James Rodrigue, a professor of surgery and vice chair of clinical research at the Transplant Institute at Beth Israel Deaconess Medical Center, African-American patients in Florida who were visited at home by educators who spoke with them and their families and friends together about living donation achieved four times the rate of kidney transplants compared with patients who received traditional counseling. A second study also led to impressive gains over two years. (African-Americans, who have high statistical rates of diabetes and hypertension, comprise one-third of all Americans with kidney failure, yet they wait considerably longer than white Americans for organs.)
Latinos too are overrepresented on waiting lists. One beacon of light is the Hispanic Transplant Program, established by Juan C. Caicedo, an associate professor in surgery and organ transplantation at Northwestern. By hiring bilingual staff, inviting patients to bring family members along to visits, particularly parents and grandparents, and respecting cultural sensitivities, the program has increased living donor kidney transplants among Latino patients at Northwestern Medicine by 70 percent. They are now working with the Mayo Clinic in Phoenix and Baylor University Medical Center at Dallas to test these approaches there. (Information in Spanish about living kidney donation is available at the website Infórmate.)
As a rule, it’s easier to solicit help for someone else than for yourself. That recognition prompted researchers at the Comprehensive Transplant Center at Johns Hopkins Hospital to test the effectiveness of training a patient’s family member or friend to serve as a “live donor champion” on the patient’s behalf.
The difference was striking. In one study, 15 participants with live donor champions had 25 donors contact the transplant center; it led to six kidney transplants. By contrast, the 15 participants in a control group without such champions received no inquiries.
Clearly, it helps to separate the patient and the advocate. Still, some champions found the process a lot of work, and many found it uncomfortable. Is there a way to make it easier?
That question led researchers from the Hopkins center, working with Facebook and Organize, to develop a smartphone app to help patients construct a story about how a transplant could change their lives. “It asks what you’re going through medically, what it’s like to be on dialysis, and what you’re up against in terms of needing a kidney,” said Cameron. “It automatically creates a Facebook post and adds links to resources. It gives friends the opportunity to reply, share the story, or even go about initiating an evaluation for donation.”
In an initial study, 54 patients, half of them African-Americans, used the app for six months. During that time, 18 donors contacted the transplant center, 11 offering kidneys and seven livers.
Users of the app were 6.6 times more likely to have a donor come forward to help than were members of a control group who did not differ in demographics, prior Facebook use, number of Facebook friends, and familiarity with social media.
Innovations like these can make a big difference for people seeking a donor. But 400,000 people in this country are on dialysis, and most have a poor understanding about transplant options. Many do not know that patients who receive transplants live significantly longer and report higher quality of life than those staying on dialysis. (Dialysis also poses risks that are underreported.) Although Medicare requires dialysis centers to inform patients about transplant options, in practice the workers often lack the time or training to do so.
One group that has had success reaching dialysis centers is Explore Transplant and Living Donation, founded by Amy Waterman, an associate professor in the nephrology department at the University of California, Los Angeles. The organization has trained thousands of workers in dialysis centers. When they, in turn, clarify options for patients, significantly more pursue transplants. “The main insight is the education is not a one-time thing,” Waterman said.
“Education should begin when patients are first getting diagnosed with kidney disease,” added Dianne LaPointe Rudow, who directs a center for living donation at the Mount Sinai Medical Center in New York. “It needs to be repeated by primary-care providers and nephrologists so that by the time patients get to dialysis they’re prepared.”
For living donation to gain broader acceptance, laws will also have to change, in particular to remove financial disincentives and institute monetary benefits. (See Tina Rosenberg’s previous column on this subject.)
In New York State, Morrison and LaPointe Rudow have formed a working group of patients, families and leaders from hospitals and transplant centers, to advance legislation that would remove disincentives for donors and increase public awareness. These include reimbursing living donors’ expenses for travel, lost wages and child care; providing health insurance in the event of post-transplant complications; and creating a one-stop educational platform along the lines of the excellent site run by Donate Life California. “At the very least we should be making kidney donation financially neutral for the donor,” said LaPointe Rudow.
At the national level, many leaders are intensifying a call for the government to explore incentives that could ethically be offered to living donors. Representative Matt Cartwright, a Pennsylvania Democrat, plans to introduce legislation to clarify how the government can test the “effect of providing noncash incentives to promote organ donation.”
Arguments about incentives tend to slip into nightmare scenarios of poor people hawking their organs for fast cash. At the global level, organ trafficking is indeed a frightening problem. In the United States, the question is this: How do you design a system to reward living donors while avoiding exploitation?
“You can build in protections,” said Sally Satel, a psychiatrist and fellow at the American Enterprise Institute who received a kidney donated by her friend Virginia Postrel. “The idea is to put a third party in charge so anybody can benefit. Don’t offer immediate cash. Offer contributions to a retirement account, or health insurance, or tuition, or donations to a charity of their choice. And build in a waiting period.”
There is a lot of worry that “poor people are going to be somehow used in this scenario,” she added. “But who are the people disproportionately dying on the waiting lists? It’s poor minorities.”
Morrison went further: “We should treat kidney donation like a public service and have a G.I. Bill for living donors.”
Each of the ideas above shows promise; together, the impact could be multiplied. That’s because, in recent years, kidney donor chains have made it possible to match many more donors with suitable recipients. In practice, incompatibilities often prevent people from donating an organ to a loved one. In a chain, however, if you help a stranger, you can find another stranger to help your loved one, and so on. So it is important to find altruistic donors to catalyze this process.
“More than half of the kidney chains are started by a non-directed donor and the average chain has five donors,” said Alvin Roth, a recipient of the 2012 Nobel in economic science, who developed the ideas behind kidney chains. Roth and his colleague at Stanford University, Itai Ashlagi, are now researching how deceased donors as well could start chains.
When living donors are asked how the decision to donate has influenced their lives, more than 80 percent say they feel a greater sense of self-worth, and almost half say they appreciate life more, LaPointe Rudow reports. Not everyone has a positive experience, however. Donors who experience complications, or whose recipients fare poorly, can feel anger or regret. And there are, of course, health risks. Kidney donation is done laparoscopically, and is far less invasive than in the past, but it’s still major surgery.
These days, Morrison says he rarely thinks about the missing organ on his left side. “If I stretch my hamstring I notice a tightness around one incision,” he said. “But if you were to puncture my remaining kidney it would be a lot worse than if I had two.” Mainly, he says, when he thinks about his kidney, he comes back to the fact that he was able to use it to save someone’s life, a person named John Mendes from Boston, whom he did not meet until three months after the transplant.
“It seems amazing to me,” he said, “and it makes me really happy and joyful.”
MAY 17, 2016
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