What would you do if you or a loved one were in dire need of an organ?
Would you patiently sit on the national transplant waiting list with more than 123,000 people in the same situation, hoping the next organ from someone who died is your perfect match?
Or would you make a plea for a living donor to come forward?
Eugene Melnyk, owner of the Ottawa Senators ice hockey team, did the latter.
In January, Melnyk learned he had a disease that damaged his liver. After discovering his friends and family were not suitable donors, his National Hockey League team held a press conference in May to publically ask if anyone would be willing to donate some of their liver to help save Melnyk’s life.
Within days, 500 potential donors came forward and Melnyk received a suitable donation from an anonymous fan in Canada.
Making a Public Plea
Melnyk’s public organ solicitation doesn’t sit well with some who say his popularity and wealth may have given him the opportunity to “list jump” over others in need of an organ.
“This is a situation where popularity or notoriety may have given him an advantage, but I’d argue that anyone can be a ‘winner’ in the media and social media because we empathize with people who are down on their luck, or who have a heartbreaking story, which can elicit a living donor,” says M. Sara Rosenthal, Ph.D., director of the University of Kentucky Program for Bioethics.
This was true for Carrie Palomado in Orland Park, Illinois. She started a Facebook campaign in hopes of finding her husband, Paris, a living donor for a kidney.
Paris Palomado suffered from kidney failure caused by type 2 diabetes and received dialysis while he awaited an organ. The average wait time for a kidney is five years, but because Palomado is Filipino-American, his nephrologists informed him that he’d likely be on the list for more than six years.
“When I learned that the life expectancy of a person on dialysis is six years, all I could think about was if Paris passed away in six years, our son would only be 16. I had to do everything I could to try to find him a donor,” says Carrie Palomado.
She turned to Facebook to make her plea in July 2013. To her surprise, a couple the Palomados briefly met eight years earlier through an online wedding chat group, sent her a Facebook message saying they both were getting tested to see if they were candidates.
The wife ended up being a match. In December 2013, she donated a kidney.
“I still can’t believe it. When I asked them why they decided to do this, they said they couldn’t imagine our son growing up without a father,” said Carrie Palomado. “The thing is they never even met our son and really didn’t know us at all.”
An Unfair Advantage?
Joel Newman, spokesperson for the United Network for Organ Sharing (UNOS), a private, nonprofit organization that manages the nation’s organ transplant system under contract with the federal government, says stories like Melnyk and the Palomados aren’t a new phenomenon.
“It’s been a topic of discussion even before there was a U.S. transplant network,” said Newman. “President Reagan went on his weekly presidential radio addresses to plead the cause of, say, a child that needed an organ. There also have been public appeals on a community basis and through local news networks, as well as occasionally national in scope.”
Newman refers to a publicized case in 2004 where a man who was ranked low on the list for a liver because his prospects were low, took out billboards that said, “Todd Needs a Liver.” He also created a website.
In response, a family directed the donation of a liver from a deceased loved one to him. However, the recipient’s cancer was advanced and he died shortly after the transplant.
Critics said the donated liver could have gone to a better-suited recipient.
“Because the waiting list is structured in a way to try to treat people who are very sick and those who have the best chances of doing well with that transplant, it becomes more problematic if somebody gets transplanted who is not the sickest or most compatible or may not do the best with that transplant if that transplant could have gone somewhere else,” said Newman.
Newman was part of a UNOS committee that looked into public solicitation over a course of several years. While UNOS determines the order of the list, it does not decide whether to proceed with a transplant or not.
“A living donation is an autonomous choice. Someone is choosing to put themselves forward. They’re putting themselves at risk. People have died or suffered long-term health complications from donating,” says Newman. “But they can choose to donate or not. They can choose who they want to help. There’s not a position that supports saying ‘The person you chose is not acceptable. You have to help this person over here.’”
In the end, the UNOS committee couldn’t come up with a recommendation that outlined a set of circumstances where a solicited living donation is right or wrong.
Carrie Palomado doesn’t see a conflict with making a public appeal.
“My Facebook campaign was perfectly ethical,” she said. “My husband’s donor willingly came forward. To say seeking out a living donor is list jumping doesn’t make sense because when you’re on the registry, you’re just sitting on a list waiting for someone to die before you do.”
Katie Hofkamp, a 34-year-old mother in Highland, Indiana, is on the list for a kidney. She understands Palomado’s stance yet she doesn’t plan to start her own public campaign.
“I get why people go to extremes to seek out living donors because the waiting time on the list is stressful,” said Hofkamp. “There may be someone out there who’s a great fit and willing to donate, so why not ask?”
At 11 years old, Hofkamp was diagnosed with the autoimmune disease, glomerulonephritis, which caused her kidneys to fail. Two years later, she received a kidney transplant from a 17- year-old boy who died in a motorcycle crash. That kidney no longer functions and Hofkamp is on dialysis eight hours a day as she sits on the transplant list.
“I’m more of a private fighter. Plus, when a living person donates an organ to someone, it’s really a thankless act. They can’t expect anything in return, and that type of pressure would add so much more anxiety to my life,” Hofkamp says.
That’s not to say she’d never consider it.
“I can’t tell you in three years what I’d do because the life expectancy of someone on dialysis is five years. I have a son and a husband to live for and I’ll definitely keep fighting,” Hofkamp said.
Concerns About the Black Market, Wealthy Recipients
Another concern with public solicitation of organs is that they can attract the black market.
“This is a valid point. There’s no way of knowing who’s contacting people seeking a donor publically,” Rosenthal said. “They may be contacted by people in poor countries who offer to donate an organ for money. These private conversations could go on under the table illegally.”
Palomado says about 30 people contacted her from across the world asking if she would be interested in buying a kidney for her husband.
“In those instances, we immediately deleted these messages and didn’t even respond,” she said. “Once we got a donor, we actually changed the Facebook page name to ‘My Husband found an Angel’ in hopes of deterring those types of solicitations.”
As for favoring the wealthy, Rosenthal says the United States uses a framework with organ transplants that tries to eliminate favoritism, but it doesn’t always work that way.
“Among wealthy civilized countries, the U.S. is unique. Our rationing system actually favors people who can pay for the transplant and access post-transplant medications to ensure success of the transplant,” she said. “However, there are a lot of ways to get covered, and transplant centers work hard with social workers and other services to investigate every avenue in terms of trying to find a third-party payer for the transplant.”
Rosenthal adds that multiple listing, while legal and even encouraged by transplant centers, favors the wealthy most.
“A lot of people will say it’s not fair because it benefits the wealthy who can jet set around the country. Steve Jobs lived in California but was able to get on his private plane to list himself in Tennessee, where he received his liver,” said Rosenthal.
While multiple listing doesn’t give people an advantage over others on each list, it can give them more chances to receive an organ, as long as they can afford to get to the states they’re listed in.
“Each center will charge you for the evaluation, which can be thousands of dollars. If you’re not wealthy, underinsured or not insured, you can’t do that,” adds Rosenthal. “Compare this to soliciting a living donor and I’d say people with all kinds of incomes have access to social media, and if they don’t, they can go to a public library.”
How to up the Donor Pool
While there are people on the transplant list who will be in greater need or more compatible with a living donor, Newman says there’s no denying that they may not be the people who have the savvy or media appeal to publicize their story.
“While the personal aspect of telling someone’s story is a potent motivator for donation because people identify with human suffering, we would prefer that someone who tells their story publically say, ‘Please be a donor. You could help me, but if you can’t help me, you can get somebody taken off the waiting list and make everyone’s chances of getting a transplant easier,’” said Newman.
So why don’t more people register as donors?
Newman said public polls and social science research show that people don’t think about being a donor and don’t feel a sense of immediacy or a need to commit to it.
“Very few people have the sense that I’m going to die tomorrow or next week so I need to sign the donor card today,” said Newman.
Rosenthal says the best way to increase donors may be an opt-out system, which requires a person to specifically ask to be taken off the donor list. Currently, the U.S. has an opt-in system, which means each person has to sign up to be a donor.
“While countries all over the world have organ shortages, opt-in systems produce lower amounts of organ donors while European countries with opt-out systems have 25 percent more donors than the U.S.,” says Rosenthal.
Some countries even prioritize transplant patients who are listed as donors over those who are not, Rosenthal adds, “so they’re making a societal statement that everyone is going to help each other.”