When the billionaire sports magnate Eugene Melnyk was diagnosed with liver failure, he crowdsourced a new organ and kick-started an alarming trend
(Image: Dave Gillespie)
One day last January, Eugene Melnyk summoned his private pilot to his home in Barbados. The loquacious 56-year-old owner of the Ottawa Senators had been feeling listless— he was fighting the urge to drift off whenever he sat down, and he found himself cold, shivering even as a warm Caribbean breeze drifted through the house. Now he wanted a second opinion. “I said, ‘Take a look at me, I don’t feel well,’ ” Melnyk remembers. “He said, ‘You look like shit.’ ”
Eugene Melnyk is the 71st-wealthiest person in Canada, with a net worth of more than a billion dollars. He earned his fortune in pharmaceuticals, founding Biovail, which specialized in developing slow-release drugs, and Trimel, one of the companies that tried to break into the “female Viagra” business. Melnyk spends his money on hockey players and thoroughbred racehorses, skates for needy Ottawa kids, and medical supplies for orphanages in Ukraine. He was born in Toronto but moved to Barbados 24 years ago. When he got sick, he called his Canadian doctor, who urged him to fly back to wintry Toronto for a proper examination. He took his private Gulfstream jet, still wearing his shorts and flip-flops.
Over the next few days, he shuttled around the city undergoing tests. Melnyk isn’t an easy patient. He can be pushy and petulant, a loudmouth who howls in protest when doctors suggest an uncomfortable course of treatment. One morning, his personal bodyguard knocked on his door at 5 a.m. “What are you doing waking me up?” Melnyk yelled. “I told you I wanted to sleep in today.” The guard sheepishly told him he needed to be at Toronto General in half an hour. The results had come back. Melnyk’s liver was failing.
Liver failure can lead to death in a matter of weeks. Melnyk’s doctors couldn’t pinpoint the cause of his illness, but the consequences of any failure are the same: toxins build up, blood stops clotting, muscles deteriorate. The body breaks down quickly. Over the next few months, Melnyk’s doctors treated one symptom after another. Ammonia built up in his brain, causing confusion. He became jaundiced, the whites of his eyes turning pumpkin orange. His body swelled with fluid. “My belly bloated out like I was pregnant,” says Melnyk. “It was horrifying.”
He needed a new liver—soon. Doctors placed him on the deceased donor list, which prioritizes transplant recipients by severity of illness. Melnyk was at the top of the list for the AB blood type, but his best chance was through a living donor transplant. He just needed to find a compatible volunteer.
While Melnyk lay in his hospital bed, Ken Villazor, his long-time confidant and the Senators’ alternate governor, began quietly contacting family and friends, hoping one of them might be able to donate. Melnyk is a well-connected man and, facing death, he used every contact he had. Earlier this year, he became honorary colonel of the 414 Squadron, so he reached out to the armed forces. “Those guys are perfect,” he says. “They’re young, they’re in their 20s, their livers are shining.” He also tried to find a donor through the hockey community. “I wouldn’t be able to get a player under contract, obviously,” says Melnyk. “But there are a lot of people who used to play and are still healthy. ”
All of the volunteers who came forward went through extensive tests at Toronto General to see if they were compatible. One by one, they were rejected. Some livers had too high a fat content. Others were too small. Others had bile ducts in the wrong configuration. Finally, the last candidate’s tests came back. The person wasn’t a match. “One minute everything is looking hopeful, and the next minute you have no options,” Villazor says.
He visited Melnyk in the acute care unit to break the news. Villazor suggested a final option: solicit a new liver from the public. Melnyk had been reluctant to tell the press about his illness. He hadn’t even wanted his two teenage daughters to know he was sick. At that point, however, he was desperate. Doctors told Melnyk he had days, not weeks, to live. “If I didn’t go public, I’d die,” he says.
On May 14, five months after Melnyk first checked into the hospital, the Senators held a press conference to announce that their owner needed a life-saving organ donor. The response was overwhelming: within days, 2,000 people called in to inquire about the possibility of donating, and 560 filled out the application. The hospital was overwhelmed. It brought in extra staff to process the paperwork.
Twelve people were identified as possible donors. Within a week, the hospital had found a match—an anonymous individual whose only desire, according to doctors, was “to help Mr. Melnyk return to good health, to enjoy his family and friends, and most importantly to bring the Stanley Cup home to the Ottawa Senators.” On May 19, Melnyk and his donor both went into surgery in Toronto. Two days later, doctors announced that the operation had been a success. From press conference to recovery room, Melnyk had a new liver in just seven days.
The Melnyk saga was unprecedented in Canada—and it made people angry. There are hundreds of people waiting for liver transplants, and Melnyk got his because he was able to exploit his fame. His critics accused him of gaming the system. And he isn’t the only one. The University Health Network handles more live liver transplants than any other institution in North America. Most of these are between family members or friends, but in recent years, doctors have witnessed several individuals in need of life-saving transplants launching public campaigns, forcing doctors to grapple with the ethics of organ donation in the social media age. Patients find themselves in a precarious situation—one where their ability to create a splash on Facebook could determine whether they live or die.
Back in the 1950s—the “black years,” as doctors call them—organ transplants were grisly horror shows. By 1963, after a decade of trial-and-error experimentation around the world, more than two-thirds of all transplants from deceased donors had been fatal to the recipient. The patients had nothing to lose—they were going to die anyway—but the details were especially macabre. Recipients violently rejected the foreign objects, their immune systems attacking the new organs. In France, the kidneys of guillotined prisoners were harvested. The operations were sensationalized as Dr. Frankenstein experiments gone wrong—maverick medical procedures that strained uncomfortably against our sense of personhood.
In the decades since, organ transplantation has transformed medicine, with new immunosuppressive drugs that allow a wide variety of donors to match with recipients. In Canada, success rates for both liver and kidney transplants hover around 90 per cent. The operations can seem like a kind of magic. A kidney is removed from a dead body and placed in the abdomen of a toddler. A healthy liver is divided and suddenly two lives are possible instead of one.
The controversies that surround transplantation stem from its remarkable success. While the vast majority of Canadians support transplants, only one per cent of people who die in hospital donate an organ. The U.S. figure, by comparison, is closer to two per cent. Canadians just don’t sign up, and hospitals aren’t vigilant enough about making sure that families of dying patients know the facts. That scarcity means people waiting for a new kidney can be on dialysis for more than five years before they find a match. Those on the liver transplant list have up to a 30 per cent chance of dying before they can receive a new one. As of October of this year, there were 1,660 Ontario residents waiting for an organ.
Triage is a fundamental part of medicine in a system with limited resources—only so many ICU beds, only so many MRI machines. A new kidney or liver is among the rarest, most valuable resources. The shortage puts doctors in the difficult position of deciding who gets which body parts.
In North America, liver donations are prioritized based on the Model for End-Stage Liver Disease, a system devised by the Mayo Clinic to predict mortality risk. MELD, as it’s known, measures various physical indicators and generates a score that evaluates the severity of someone’s liver failure. That score aims for scrupulous fairness—it’s meant to prevent physicians or patients from making decisions using subjective observations. For example, a patient with advanced liver cancer may benefit from a transplant but might not be eligible because his or her chance of survival is slimmer. MELD captures cold facts—bile excretions and blood clotting—and ignores the soft, heart-tugging details of a person’s life. It doesn’t reflect someone’s age or job, dependants or values. It doesn’t discriminate between a convicted murderer and an innocent toddler. It is life-saving care reduced to a bloodless arithmetic.
For decades, the primary sources of organs have been deceased bodies. Given the shortage, however, doctors and patients have started looking for live donors. In Ontario, where donor rates are low and the need is staggering, the University Health Network has been expanding its living donor program, letting patients know how remarkably safe the procedure has become. Since 2009, the paired donation program has allowed prospective kidney donors who are incompatible with their family member to donate to another person on the list; in return, their loved one gets bumped to the top of the list. Kidneys can be removed laproscopically, through a small incision that reduces hospital stays to just a few days. A liver transplant is more complicated—doctors can remove 20 to 70 per cent of a person’s liver, and the organ will grow back to its original size within months. At UHN, there have been 600 live liver transplants without a single donor suffering significant long-term side effects.
Even without complications, however, a donor must still suffer all the discomforts and inconveniences that come with being sliced open and sewn back together. For some doctors, the idea of performing surgery on a perfectly healthy individual contravenes the physician’s credo to do no harm. David Grant, the director of the living liver donor transplant program at UHN, says that his program only exists because of Canada’s poor deceased donor rate. “My dream is that one day we no longer have to do live donations,” says Grant. “We do them because of unmet need, but it will never be our first choice.”
For doctors, the logic of family-to-family donations is obvious. The benefits of giving an organ to a complete stranger, however, are far murkier. The transplant program is a rare subset of our medical system that is entirely dependent on generosity. Organs cannot be legally bought or sold—they must be a gift. And giving such a precious gift to a stranger with no opportunity for reward might seem pathological. Our minds quickly jump to more tawdry explanations. Doctors fear that money may be changing hands. They worry that a recipient who takes an anonymous donor’s gift could open himself up to extortion in the future. They wonder if he’s insane.
When 45-year-old Kevin Gosling first decided he wanted to give his liver to a stranger in 2004, doctors at his local hospital turned him away. “The transplant program in our hospital does not use donors who have no relationship with the intended recipient, and this is the policy in most programs across the country,” they wrote to him. “You would be potentially risking your life and we feel that this is more appropriate if you are a relative or friend of the person in need.” Or, as Gosling puts it: “They thought I was nuts.”
Gosling, who’s now 56, is a retired father of three from Cornwall, Ontario, with a ginger goatee and wire-rimmed glasses. He has 12 siblings and several nieces and nephews (one of whom is the actor Ryan Gosling). He spent decades working at Kraft as a productivity improvement specialist, a job that consists of waking up every day and trying to figure out how to make things work a little faster, a little better. One day in 2004, he read an article about living donors in a magazine. The thought occurred to him: Why not me? He was healthy, financially stable and in a position to save a life. The more he researched it, the more determined he became. “It’s heartbreaking how many people are waiting,” he says.
He wasn’t discouraged by his first rejection. Once he sets his mind to something, he tends to become obsessive. When he took up karate, it wasn’t enough for him to take a class. He had to get a black belt, open a school and hold a public karate demonstration in which he let a truck drive over his stomach in a local mall.
Gosling began speaking with doctors at Toronto General about anonymous donation. At the time, a few American hospitals were experimenting with the procedure, but it had never been done in Canada. Doctors were wary. They put him through months of physical and psychological testing. “They asked if I had religious reasons for wanting to do it, like I’d done something bad and I wanted to atone for my sins, or if I had a book deal,” he says. Gosling kept telling them the truth was simpler: he just wanted to help.
In 2005, doctors removed the left lobe of Gosling’s liver and put it into a child who had been born with a metabolic disorder called urea cycle enzyme deficiency. He kept the note he got from the family of the recipient, a heartfelt letter thanking the “angel-donor named Kevin who was willing to risk an operation which he did not need so that our child could begin to live a carefree and normal life.”
In the time since Gosling’s transplant, UHN has become a leader in anonymous donations. Potential donors go through a careful screening process, with an extensive psychosocial evaluation designed to make sure they’re in the appropriate state psychologically and financially—that they’re able to miss work while they convalesce. In the year after Gosling’s operation, UHN performed two anonymous liver transplants. Last year, they performed 15.
Recently, however, there’s been a wrinkle in the anonymous donor system: the rise of public campaigns. These kinds of pleas were once rare curiosities. In the summer of 2004, a series of billboards appeared alongside a Houston highway. “I need a liver—please help save my life,” they read, alongside an image of Todd Krampitz, a 32-year-old man with liver cancer, and the URL toddneedsaliver.com. In 2005, a 31-year-old New York PR executive in need of a liver donor launched a multimedia campaign that included an ad in the Sunday Times.
The Internet has made this kind of public solicitation easier and far more commonplace. In the U.S., websites have popped up (some of them for-profit) that connect patients with potential donors. On social media, families regularly create public pages in the hope that their stories will gain sympathetic eyes. Last December, Michael and Johanne Wagner built a Facebook page looking for liver donors for their three-year-old girls. When the story made the news, hundreds of volunteers came forward. “In the last year or two we’ve seen an increase in people using social media, regular media, any type of outlet to try to get living donors,” says Atul Humar, the director of UHN’s transplant program. “I think it will increase with time.”
On April 26, 2015, the day of their daughter’s baptism, Peter Budziak and his wife, Betsy Amores, woke up to find eight-month-old Delfina lying in her crib with a raging fever. “She was on fire,” Betsy remembers. “We knew right away that meant an infection.”
The family lives in Vaughan, where Betsy works for a cosmetics company and Peter does graphics at Sportsnet. At two months old, Delfina had been diagnosed with a congenital liver disease called biliary atresia. The disease closed her bile ducts, which left her jaundiced and weak. The family had been in and out of the hospital ever since, trying to figure out how to manage their three-year-old son’s schedule while camping out for weeks at SickKids. That morning, the family squeezed in Delfina’s baptism, then rushed her to SickKids, where they found out she needed a new liver.
Over the next few weeks, Betsy stayed at the hospital during the day and extended family rotated on the night shift—Peter would sleep there on Tuesdays, Betsy’s brother on Wednesdays, Peter’s sister on Thursdays. The family learned how long the wait for a new liver could take. They researched MELD scores. Are we hoping she gets sicker so that they bump up her score? thought Betsy. The baby was sleeping no more than 15 minutes at a time, crying as doctors pierced her with needles and placed IVs and PICC lines into her tender body. The idea of watching her waste away was unbearable.
Peter, Betsy and their families all volunteered to be tested as living donors, and one by one they were ruled out. Peter had the wrong blood type, and Delfina’s aunts and uncles were incompatible. Betsy was the final hope, but there were nodules on her liver that had the potential to become cancerous later in life. It was too risky.
Peter sat in the waiting room of SickKids, racking his brain for some way to help his daughter. “You kind of sit there and stare at that possibility in the face, that there’s no one left,” he says. “That was the lowest point in my life.” Then he thought of Eugene Melnyk. Peter had barely paid attention to Melnyk’s story when it was in the press a few weeks earlier, but he suddenly remembered the billionaire’s plea and the attention it had received. He opened his laptop and logged onto Facebook.
“Okay, so it’s come to this,” Peter wrote on his wall. He explained Delfina’s need for a transplant, the fact that none of the family members was a match. “There’s bound to be someone out there,” he wrote. “If 55-year-old Eugene Melnyk was able to get over 500 willing donors, how many can eight-month-old Delfina Budziak get?” He included a photo of Delfina smiling in a crib, clutching a rattle in a chubby hand. There was a plastic oxygen tube stretched across her upper lip.
When Peter woke up the next morning, their post had gone viral—shared by friends of friends of friends, passed down a chain of online acquaintances who were touched by Delfina’s story and photo. One of the people who read the post was Laryssa Hetmanczuk, a 33-year-old political advisor. She had been thinking about organ donation ever since she’d heard Eugene Melnyk’s story. Hetmanczuk knows Melnyk from the Ukrainian community, where they’d worked together on fundraising initiatives. She had been moved by his plea, but because she was pregnant, she wasn’t able to get tested as a donor. When Hetmanczuk heard about Delfina, she decided to get in touch with Peter and Betsy to see what she could do. “I can’t give you my liver, but I can help spread your message,” she told them.
Hetmanczuk is the former press secretary for both Tony Clement and Tim Hudak, and now works for the Ontario Lottery and Gaming Corporation. She knows how to get a story in a newspaper, who to call at TV stations, how to run a social media campaign. She suggested creating a Facebook page for Delfina and reached out to her media contacts. She flooded Twitter with requests for retweets from journalists, politicians, the Ottawa Senators. She set up a Gmail address that automatically responded to messages with a short note explaining how people could sign up to be tested. Within days, Delfina was featured on City TV, Global and CTV, her story splashed across newspapers. The Delfina Needs a Liver page got almost 2,000 Facebook likes and 1,500 messages from people asking what they could do.
In the end, the media attention was unnecessary. Days after Defina’s parents began their campaign, doctors re-examined Betsy and told her the nodules on her liver could be removed. On June 18, surgeons performed the procedure, and Betsy and Delfina were both fine. But for Hetmanczuk, the Delfina episode was evidence that anyone running a competent social media campaign could replicate the success of a billionaire celebrity like Melnyk. The support from strangers across the country had been moving, a sign that ordinary people can inspire extraordinary altruism.
While working with the family, Hetmanczuk learned that Jacob Craig-Gregory, an infant in a nearby hospital room, had the same illness as Delfina. Jacob’s mother, Kaitlin, is a 20-year-old single parent. She had created her own Facebook page with the help of a family member, but she was soon overwhelmed by the process. Hetmanczuk stepped in again, offering her services. Again she created a Gmail account and handled incoming requests while Kaitlin sent out press releases. Whenever a story about Delfina made the news, her parents were sure to mention Jacob’s plight. His story gathered support online, but the media didn’t pay as much attention. News broadcasts had already run one parent-seeks-donor tearjerker. A second one was a harder sell.
Like Peter and Betsy, Kaitlin was eventually able to find a living donor through her own network. In August, Jacob was released from the hospital, and he’s now healthy. But a system that depends on generous people with PR skills or a fickle press or a social media audience makes some people in the medical community uncomfortable. “It’s like a beauty contest,” says Udo Schuklenk, a bioethicist at Queen’s University. “It’s really macabre. If people are sufficiently devastated by what might happen to you and your family, you’re more likely to get a donor.”
It’s difficult to square public solicitations with a medical system that is supposed to be about fairness. If the deceased donor list relies on hard facts, the living donor program rests purely on emotion. Do you have a compelling tale? Are you able to elicit the compassion of strangers? How do you present your life story in a way that will compel people to like or retweet?
A 2012 study led by Alexander Chang, a nephrology fellow at Loyola University Medical Center, analyzed how 91 people used Facebook to seek kidney donors. Twenty-seven of the 91 were able to find people willing to be tested. Chang also revealed that white patients were more successful than other ethnicities. The study has a tiny sample size, far too small to make broad conclusions about racial biases. But the implications are clear: using social media to distribute organs opens up the transplant system to the same prejudices and whims that govern the rest of our online lives.
When the patient isn’t rich or famous or adorable, it can be harder to drum up sympathy. In January, 70-year-old Usman Qureshi found out his liver was failing. He had come to Canada from Pakistan as a young man and worked for decades in construction. He’d recently been diagnosed with non-alcoholic steato hepatitis, which caused his muscle mass to disappear and his stomach to bloat.
Qureshi’s son, Andy, decided to seek a donor from the public. Andy is a 38-year-old IT consultant whose inclination, when presented with a problem, is to come at it methodically from all angles. When he first heard Melnyk’s story, it made him optimistic about his father’s chances. Both men have the same blood type, and the speed at which Melnyk was able to find a donor gave Andy hope. Of the 560 people who were tested for Melnyk, however, just 12 said they would volunteer for someone else. People responded to Melnyk because they felt they knew him, or because they wanted to donate to the guy who ran their favourite sports team. “How do you replicate that?” asks Andy.
Andy began his own social media campaign for his father, creating a website and tweeting constantly under the hashtag #SaveUsman. He studied Delfina’s Facebook page, trying to understand how he could duplicate its virality. He considered buying Facebook ads to increase his reach but decided he didn’t want his father’s life to be yet another piece of sponsored content.
He tried to make the public see his father the way he did. How could he use 140 characters to represent a man who came to Canada from Pakistan and did everything he could to help his family? How could he communicate his father’s innate generosity? Andy remembers being a child in Edmonton in 1987 when a deadly tornado tore through the city. The family huddled in the basement, terrified. Then, while the sound of the storm was still reverberating in the air, his father climbed upstairs and walked into the shattered city to see if anyone needed help. “He said, ‘This is something that you have to do. You help your neighbours,’ ” Andy explains. He had the queasy feeling that his father’s life could depend on his ability to make a 70-year-old Pakistani immigrant as relatable as a hockey owner or a baby girl.
When you ask physicians whether the current living donor system is fair, a look of discomfort flickers across their faces. They pause. They speak with care. “Well… I don’t know if it’s fair or not,” says Atul Humar. “But clearly there are more benefits than downsides.”
Last summer, when Eugene Melnyk’s story went public, newspapers questioned how a man who lives in Barbados was able to access the Ontario health care system. The answer was that he paid out of pocket for an operation that costs, on average, $128,000. Critics said he “jumped the queue,” but of course there is no queue of living donors. Indeed, by removing himself from the deceased donor list, Melnyk bumped everyone below him up a spot. And by rallying a group of people who were willing to donate to another individual, he had increased the supply. “I mean, how do you argue with me? You can’t. I generated my own liver, plus several more,” says Melnyk, referring to the volunteers who said they would consider donating to another patient. It turned out that of that group, only five were tested and none were eligible to donate their liver. One is currently being assessed for kidney donation.
Even though Melnyk did nothing wrong, his story left a lingering sense of unease. Many countries have universal health care, but few explicitly outlaw private care—Canada’s system tries to prevent the wealthy from accessing better care than anyone else. The Romanow Report, a 2002 study that articulates Canadian health care values, emphasized fairness. “A key consideration in addressing the performance of any health care system, including ours, is equity,” it reads. “Equity means that citizens get the care they need, without consideration of their social status or other personal characteristics.”
In October, the Canadian Society of Transplantation used their annual meeting to discuss the public solicitation of organs. The Melnyk case had created a sense of urgency. A celebrity had strained hospital resources, forcing administrators to deal with hundreds of people coming forward at once to be tested. Doctors wanted to establish guidelines that would set a precedent for future requests. “We’re only one episode away from chaos,” says Steven Paraskevas, the outgoing head of the society.
More urgent than the bureaucratic nightmare is the moral murk of organ donations in the social media era. Public pleas force hospitals to serve one patient while ignoring others who haven’t been able to attract the same attention. Australia has banned public solicitation, full stop. In Belgium, doctors refused to perform a transplant organized on Facebook. But Canada doesn’t want a policy that would reduce the number of organs in the system. “Every donation is one less person on the waiting list,” says Paraskevas.
The society hopes to have new policies drafted for April 2016, offering doctors guidance through the uncharted difficulties. But the simple fact is the living donor system, by necessity, will always throw the ordered objectivity of our donor program into chaos. An organ is a gift. And gifts have nothing to do with equity.
In early October, Eugene Melnyk appeared in public for the first time since his operation. Standing at centre ice during the Senators’ home opener, draped in a red hockey jersey, he smiled at the crowd as they gave him a standing ovation. His two teenage daughters stood at his side. “On behalf of our family, my sister and I want to thank all of you for helping save my father’s life,” said 13-year-old Olivia. “You truly are the greatest fans in the world. Merci, thank you!” Melnyk beamed while the crowd erupted into a chant of “Go Sens go!”
Melnyk has been recovering in a condo he bought in Toronto, a place close enough to the hospital that he can attend his regular checkups. When he got out of the hospital, he found he’d dropped 50 pounds, and now he is trying to get back to a healthy weight. “The first thing I did was buy a pair of suspenders. And that looked funny,” says Melnyk. “I mean, they kept my pants up, but then my crotch was, like, disfigured.”
Since Melnyk’s public solicitation, the Senators have used their social media reach to help push other public campaigns. They retweeted Delfina’s liver plea. In mid-October, a few days after Melnyk’s appearance at the hockey game, the team tweeted another plea: “Please take a moment to watch and learn about Usman’s story—he’s looking for a liver donor. @SaveUsman #BeADonor.”
From his home in Toronto, Andy Qureshi appreciated the gesture. By that point, Usman was becoming alarmingly thin. His face was a bloodless yellow, his stomach distended. Andy had spent the week frantically tweeting whomever he could. “Hey @Bluejays RT? Help this Jays fan find a liver donor and save his life!” he wrote, attaching a picture of his smiling father in a Jays cap next to an adorable granddaughter. He tweeted at Justin Trudeau and John Tory, at Roberto Alomar and José Bautista. He even reached out to Laryssa Hetmanczuk, who was quickly becoming an unofficial organ crowdsourcer. She began the now-familiar routine, using her contacts to spread Usman’s story.
At 2:45 a.m. on October 19, the hospital called. They had a liver. After that, everything happened fast. Usman Qureshi went into surgery at eight that morning, and by midnight Andy was holding his hand. Within days, his dad was talkative and in high spirits, the colour returning to his face at a speed that felt surreal.
Andy doesn’t know where his father’s new liver came from—whether the donor was living or deceased, male or female, someone who read his impassioned pleas or someone who had long before decided to help. “Whoever that donor is, and that donor’s family, they’re our angels,” Andy says. “If it’s a deceased person or a living donor, either way they’re precious to me.” All he knows is what transplant doctors told him: that all organ donations, whether they come from someone living or dead, are acts of altruism. That the system only works, imperfectly but miraculously, because someone chooses to make a gift.
