Many of us have seen the pictures of Sarah Murnaghan, a little girl with brown hair named sitting in a hospital bed with a machine strapped to her nose, forcing oxygen in and out of her lungs. She needed a lung transplant, but medical rules typically prevent children under twelve from receiving adult lungs—and pediatric lungs are rarely available. In May, 2013, Murnaghan’s family started a petition on the Web site change.org, asking the organ-allocation rule makers to reverse their policy. It led to a lawsuit in which a federal judge ruled in early June that Murnaghan should be eligible to join the adult transplant list. She received a pair of adult lungs a week later. The lungs failed, and she received another pair three days after that. Today, she’s alive and recovering.
Maybe you’ve also seen the video of a fifteen-year old boy named Anthony Stokes. He looked like a regular kid, but he was going to die without a heart transplant. His parents were told that he wasn’t a viable candidate, owing to vague concerns about “noncompliance.” Desperate, his parents turned to the media, and the story went viral. The hospital put the boy on the transplant list, and he got a new heart a week later. Or perhaps you’ve come across the Facebook profile of a man named Eddie Beatrice. Doctors told him that he might wait five years for a life-saving kidney transplant. He decided to advertise his plight on Facebook, and Eddie’s Kidney Kampaign was born. Almost immediately, he connected with the woman who would ultimately donate her kidney to him.
Patient stories have always driven change in medicine. But in the realm of organ-transplant allocation and social media, which suddenly makes it possible to find donors, promote exceptions to organ-allocation rules, and even force a hospital to reverse its medical judgment, the implications have some bioethicists and physicians squirming. How do we keep organ distribution from morphing into a popularity contest, where those with the most sympathetic stories win, or are allowed to change the rules?
“The obvious potential problem is that someone who’s smart or connected can make the system work for them in ways that other people without those advantages can’t,” Dan O’Connor, a Johns Hopkins researcher who studies the ethics of the exchange of medical information in online social networks, told me. “Whenever you’re using platforms like Facebook, the question is, what kind of person, what demographic profile has the time and energy and communication skills to make this work?”
It’s important to distinguish between an organ that can be given voluntarily by a living person and those that are harvested from an organ donor following death: the rules and lists people tend to associate with organ donation apply to organs from deceased donors. If you’re an organ donor, after you die, a complex algorithm is used to decide who gets your heart or lungs or liver or kidneys. Nearly a hundred and twenty thousand patients waiting for transplants are on a national list maintained by the United Network for Organ Sharing (UNOS), a private, nonprofit organization established by Congress to ensure equitable organ distribution. Rules are different for each organ, but the goal is to give the organ to the person who is sick enough to need a transplant, strong enough to survive the operation, and has demonstrated a willingness and capacity to adhere to a complex, lifelong medication regimen. While a “directed donation” to a certain individual after death is possible, it’s an infrequent occurrence, with approximately a hundred such donations each year.
The rules that determine who’s first in line for deceased donor organs scrupulously avoid the appearance of a popularity contest. Key ethical principles of distributive justice and equity tell us that donated organs should be made available based, first and foremost, on medical need. “ ‘Social utility’ is, quite deliberately, not part of the equation of need. In fact, convicted criminals are allowed on the organ-donor waiting list,” said Michael Shapiro, a transplant surgeon in New Jersey who is a member of the UNOS ethics committee.
Donations from living donors, in contrast, are a “Wild West,” said Jeffrey Cooper, a liver, kidney, and transplant surgeon at Tufts Medical Center. When you’re alive, your organs are your private property. In this case, autonomy, rather than distributive justice, is the driving ethical force. That is, if you want to give away a part of yourself, you get to choose who gets it.
Until recently, public solicitation for an organ transplant was a curiosity. In 1982, a desperate father found his way into an American Academy of Pediatrics meeting, where he pleaded for a liver transplant for his dying child; she got the transplant. In 2004, a young man named Todd Krampitz rented billboards on a Houston highway with his picture and the words “I need a liver, Please help save my life.” He, too, got a liver, from a deceased donor whose family had heard about his case and requested that the liver go to him, rather than to the national need-based list. (Around the same time, a Web site called MatchingDonors began as a way to link potential donors and recipients, and was featured in a 2009 New Yorker piece by Larissa MacFarquhar that explored the question of who would donate a kidney to a stranger.)
Today, Facebook is the new billboard. Jerry Wilde, a college professor in Indiana who suffers from a genetic syndrome that destroyed his kidneys, got his first kidney transplant in 1992 the old-fashioned way, by waiting on the list for a deceased-donor organ. Years later, doctors found a large tumor on the transplanted kidney, and Wilde was once again dependent on dialysis. Under pressure from far-flung family members who were curious about his medical condition, Wilde started posting updates on Facebook.
Leah Hostalet, a former student, was idly scrolling through her Facebook newsfeed when she came across one of his updates. He had been a favorite professor, and it occurred to her that his status updates weren’t enough to rustle up a transplant; to do so, she suspected, he needed a Facebook page to promote his cause. With his permission, the thirty-three-year-old elementary-school teacher “whipped up” the Find a Kidney for Jerry page in November, 2011. The goal, she said, was to “introduce Jerry to the world.”
“Jerry Wilde is a father, husband, friend, and an educator,” Hostalet wrote. “He is a dialysis patient in need of a kidney transplant. He needs someone to save his life.” Shortly thereafter, Wilde received a Facebook message from a woman who lived in his town, but whom he’d never met. She wanted to become his kidney donor. They corresponded on Facebook, and now her organ lives inside him.
Local news featured their story, and Hostalet found herself advising others on the kidney waiting list. In February of 2012, she created the Find a Kidney Central page on Facebook. It’s a repository of pages for people seeking kidneys, sorted by blood type and state. “If somebody has an amazing page, they’re probably more likely to find a donor quicker than somebody whose page isn’t as good,” said Hostalet, who sometimes rewrites personal descriptions, fixes punctuation, and insures that pages include photos and key details such as blood type, location, and transplant-center information. Now, Hostalet has three hundred and forty-six pages linked to her site. She’s seen sixty patients receive transplants, but can’t be sure how many of these were through donors found on the site.
Whether it’s Michael J. Fox and Parkinson’s disease or Angelina Jolie and breast cancer, many diseases garner research dollars by virtue of a celebrity face. But in general advocacy efforts, you don’t have to be popular to benefit from progress in research; if the standard of care improves, everyone wins. In contrast, when it comes to organ transplants, one person’s win seems to be another’s loss. Some see this as a narrow-minded perspective. For instance, it’s equally possible that those who are able to elicit donors through effective social-media efforts draw in people who would not have donated otherwise. But, even if the number of donors has increased, is it fair that the Internet-savvy, the cute, and the connected stand to benefit most?
“What are the factors that come into play when people are looking online?” asked Cooper, the Tufts transplant surgeon. He recently co-authored an opinion piece in a scientific transplant journal arguing for greater oversight of online donor-matching networks. “How do you decide who lives and who dies? Are you looking for people who are more educated, or wealthier, or those who have a particular sexual preference?” The data is sparse. But a study published last year provides some worrisome evidence. Researchers at Loyola University examined ninety-one Facebook pages seeking kidney donations on a random day in October, 2011. They found that white patients and those with more than fifty posts—the most prolific pages, it seems—were more likely to have people come forward and get tested to see if they could donate.
“Social media has the potential to subvert the whole allocation system,” said Shapiro, the transplant physician who is a member of the UNOS ethics board. Shapiro chooses not to perform kidney transplants on donor-recipient pairs who met through online advertising. “It’s not hard to imagine that if you’re attractive and young and appealing, it’s easier to get people to donate to you than if you’re short or ugly or have a hunchback. And that’s not the way we want the system to work,” he said.
Andrew Cameron, a transplant surgeon at Johns Hopkins, takes a more moderate position. Recognizing that there is some inevitability to the use of social media to drive organ allocation, he has been trying to figure out how to help those for whom these tools are less instinctive or accessible. He and his colleagues are developing a smartphone application that will move physicians solidly into the arena of social networking to find organ matches. The goal, Cameron says, is to work with a software-engineering company, transplant ethicists, and patients to develop an app that standardizes the approach people use to promote themselves to prospective organ donors. In short, the app will offer a “template” for those in need of organs to tell their story, and will allow potential donors to link directly to the transplant center for further information, or to share the story with their Facebook circle.
Cameron started thinking about the link between Facebook and organ transplantation in 2011, when his former Harvard classmate Sheryl Sandberg (who was profiled in the magazine that year) approached him about whether Facebook could help to reduce the organ-donor shortage. On May 1, 2012, Facebook added an option that allowed users to “share” organ-donor status on their timelines, with a link to their state online donor registry. In a study published this June in the American Journal of Transplantation, Cameron and his colleagues reported that on that day, online organ-donor rates soared to twenty-one times the usual level. Registration declined in the following days, but, even two weeks later, remained double what they were before. For Cameron, this was a powerful lesson, suggesting that social networking might be the tool needed to address what he describes as the “refractory” public-health problem of inadequate organ-donor numbers. “We have the tools. It’s on us to effectively mobilize them,” he said.
That’s what Eddie Beatrice found out on his own, on New Year’s Day in 2013. His doctor had added him to the national waiting list, and encouraged Beatrice to ask his family and friends for a kidney, but hadn’t mentioned the Internet. Face-to-face conversations to ask for an organ are awkward, and Beatrice felt more at ease sending this missive into cyberspace: “Happy New Year! I badly need a kidney … I am trying real hard to live a regular life and support my family but it has been difficult … I am only 51 and still have a lot of life to live with my wife of 22+ years and two children … Please help me to start this New Year on a positive note.”
A little while later, Beatrice came upon a post from a woman in California looking to donate. He sent his information to her, and this past April, he received the transplant. Now, he is off dialysis, working for his own Internet sales and marketing company. The media frenzy surrounding his story has died down, but, from time to time, patients on the organ waitlist or their families still contact him for advice on how they, too, can use social media to find a living donor. Do your own research, he tells them. Keep a positive attitude. And most important? “Networking,” Beatrice says. “Networking, networking, and more networking.”
Daniela Lamas is a fellow in critical-care medicine at Massachusetts General Hospital in Boston.
Photograph by Phillip Toledano.
