Greer knew that two out of five people starting dialysis die within a few years of their first treatment. “I try not to pay attention to statistics,” she says, “but this was clearly going to change my life.”
In one last attempt to avoid dialysis, Greer posted her SOS online.
“It was crazy,” she says. “Even to ask a friend was hard. You have to work up the nerve to ask them. But it had been the most horrible nine months of my life. You’re really out there on your own.”
No matter how badly someone needs an organ, it is illegal to buy one in the United States. Because of that, some people seek donors abroad, says Dr. Amy Friedman, director of the transplant program and professor of surgery in SUNY Upstate’s College of Medicine.
Friedman co-authored an article on the subject in Kidney International in March 2006 with her father, Dr. Eli Friedman, then chief of the Division of Nephrology in SUNY Downstate’s Department of Medicine. In that article, they make the case that the federal government should pay $40,000 to living kidney donors. Doing so, they say, would not only increase the kidney supply but would greatly reduce the need for federally funded dialysis.
Even paying $15,000 for a kidney would increase the number of transplants by 44 percent, according to Nobel Prize-winning economist Gary S. Becker. He co-authored a paper on the topic in 2007 with then SUNY economics professor Julio Jorge Elías for The Journal of Economic Perspectives. They determined that $15,000 is what it would take to convince a person earning $35,000 a year—the median American salary at the time—to donate a kidney after considering risk of death, reduced quality of life and time lost during recovery.
The $15,000 Becker notes in the paper would add only 9.5 percent to the cost of the transplant procedure, which averaged $160,000 in 2005.
Some fear, though, that paying for organs inevitably would be exploitive. A recent article in the British Medical Journal notes that nearly all the donors in Iran, where it has been legal to purchase organs from living donors since 1988, are “desperately poor men” (although it acknowledges that many of the recipients are, too).
The Iranian government pays unrelated kidney donors the equivalent of $1,200 and provides a year of free health care, including the surgery itself. Donors also frequently negotiate an additional payment from the recipient.
In her book, When Altruism Isn’t Enough: The Case for Compensating Kidney Donors (AEI Press, 2009), Dr. Sally Satel, a practicing psychiatrist and former lecturer at the Yale School of Medicine, advocates health insurance, tax credits, tuition vouchers and a contribution to a tax-free retirement account for donors willing to give a kidney to a stranger. Satel received a kidney from a living donor in 2006.
Even the influential American Medical Association has called for modifications to current law. In 2008, it advocated allowing pilot studies to use modest financial incentives to influence the organ supply.
Nine days after Nora Greer’s unorthodox posting, Cleveland Park’s Listserv picked up her SOS. Then, on Dec. 31, the Washington City Paper wrote an online article about the posting.
That same day a 21-year-old stranger who asks not to be identified offered Greer a kidney. “He told me he came from a broken home, but that a lot of people have helped him in the past and he wanted to help somebody,” Greer says. “He knew when he talked to me that he was my blood type, so we were just hopeful it would work out.”
In the ensuing months, the volunteer donor would undergo physical and psychiatric exams to ensure he was healthy and truly willing to donate. From experience, Greer knew there was a possibility he could change his mind.
In 2002, a Nashville, Tenn., insurance executive named David Undis was looking for a project to keep him occupied after his retirement. “I kept running across articles about all the people dying waiting for organ transplants,” Undis says. “It occurred to me that we could get more organ donors if donated organs were given to registered organ donors.”
Undis researched the idea and found it had been around for a long time without ever being implemented. So that same year he created LifeSharers to increase the pool of potential organ donors.
The premise is simple: Each person who joins LifeSharers agrees to give his or her organs to a fellow LifeSharer. Membership in the program is free and open to anyone over age 18. If none of the members needs an available organ, it may be given to a nonmember. Think of it as a twist on the Golden Rule: If you’re not willing to donate an organ, you shouldn’t be first in line to receive one.
“There’s a shortage of [transplant] organs because…there’s nothing in it for the donor other than a chance to do something nice for another person,” Undis says. “We offer a really good trade. Members agree to donate organs when they die…and make them available first to other members needing an organ.”
About half the organs transplanted in the United States go to people who have not agreed to donate their own organs when they die, Undis says. He believes that is inherently unfair. “It’s like giving the Powerball jackpot to someone who hasn’t bought a ticket,” he says.
UNOS sees it differently. “The LifeSharers approach would essentially punish transplant candidates who haven’t made a particular personal decision,” says UNOS spokesperson Amanda Claggett. “And while we value that particular decision, we believe that the transplant system should neither reward nor punish people for their personal decisions or beliefs.”
To date, LifeSharers has not been put to the test. Of 14,509 LifeSharers, only 102 are on the UNOS list awaiting transplant organs. “We haven’t had a member die and become a donor yet,” Undis acknowledges. “I expect when that happens, our membership will grow tenfold.”
By August 2009, Nora Greer was undergoing pre-transplant testing. Her anonymous donor, who had stepped forward eight months earlier, had passed all of his screening tests and was deemed a good match. In three weeks, Greer would undergo surgery and receive a new kidney.
For the first time in a year, she felt upbeat. “I am ecstatic,” Greer said at the time. “I’m not a very religious girl, but it’s such a blessing.”
As her September surgery date approached, however, a mammogram revealed lumps in both breasts. A biopsy confirmed they were malignant. The same day she received the biopsy results, her mother was formally diagnosed with Alzheimer’s disease.
“All at once, I felt like everything in my life was going wrong,” Greer says.
Like 3,244 others in 2009, Greer was now considered too ill to even warrant a place on the waiting list. Instead of transplant surgery that month, Greer underwent a double mastectomy, followed by chemotherapy and radiation treatments.
More than a year has passed, and Greer is cancer-free. She must remain so for two years before becoming eligible to undergo transplant surgery. “My journey to a kidney transplant was rudely interrupted,” she says. “I don’t think I realized how sick I really was.”
She’s “on the edge” of needing dialysis—her kidney function has dipped to 16 percent—but holds out hope of avoiding it.
In an ironic twist, Greer’s failing kidneys have distracted her from dwelling on the extent of her cancer. When she had to decide whether to get a double mastectomy, for instance, she says the choice wasn’t difficult. “I knew I had to get rid of the cancer, or otherwise it could reoccur and then I would have to start my two-year wait for a transplant all over again,” she says. “I imagine for some women the decision for a double mastectomy is near impossible.”
Throughout her cancer treatment, Greer’s “angel,” as she calls him, has assured her that he will be there for her when it’s time. He’s a budding writer and they meet regularly to talk about their craft over coffee. He even house-sits for Greer and her husband from time to time.
Her life has changed so profoundly since her kidney diagnosis and the posting of that desperate SOS. It makes one wonder: Is she a registered organ donor herself?
Greer hesitates. “I would be,” she says finally. “I definitely, totally believe in the process. But I don’t know if it’s on my license.”
How to Become an Organ Donor
- Sign up as an organ and tissue donor on the state’s donor registry. Go to: www.organdonor.gov/stateMap.asp.
- Indicate your choice on your driver’s license. Do this when you obtain or renew your license.
- Tell your family about your donation decision. Even if you’ve signed up, your family will be consulted before organ donation.
- Tell your physician, faith leader and friends.
- Prepare and sign a living will and an advance-care directive. These legal documents can clarify your choice as an organ donor.
From the National Institutes of Health March 2011 "News in Health” newsletter.
Matthew Boswell is a freelance writer and director of the Theater and Media Conservatory at Bethesda-Chevy Chase High School.
