Now the ability to make a splash on social media could determine whether patients live or die
One day last January, Eugene Melnyk summoned his private pilot to hishome in Barbados. Theloquacious 56-year-old owner of the Ottawa Senators ice hockey team 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 asecond opinion. Isaid, Take a look at me, I dont 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 $1bn. He earned his fortune in pharmaceuticals, founding Biovail, which specialised 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, ice skates for needy kids in Ottawa, 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 is not an easy patient. He can be pushy and petulant, a loudmouth who howls in protest whendoctors suggest an uncomfortable course of treatment.One morning, his personal bodyguard knocked onhis door at five oclock. 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 halfan hour. The results had come back. Melnyks liver was failing.
Liver failure can lead to death in a matter of weeks. Melnyks doctors could not 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, Melnyks 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 prioritises 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 longtime confidant and adviser 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 Canadian air forces 414 Squadron, so he reached out to the armed forces. Those guys are perfect, he says. Theyre young, theyre in their 20s, their livers are shining. He also tried to find a donor through the hockey community. I wouldnt 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 hadtoo high a fat content. Others were too small. Others had bile ducts in the wrong configuration. Finally, the last candidates tests came back. The person was not 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 had not 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 didnt go public, Id 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. Withinaweek, 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 [ice hockeys most prestigious trophy] 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 pressconference to recovery room, Melnyk had a new liver injust seven days.
The Melnyk saga was unprecedented in Canada and it made people angry. In that country alone, 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 is not the only person to have done so. The University Health Network, Canadas largest research hospital, 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 make a splash on Facebook could determine whether they live or die.
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Back in the 1950s, 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 operations were sensationalised as 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. 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 fromits remarkable success. While the vast majority of Canadians support transplants, only 1% of people who die in Canadas hospitals donate an organ. The US figure, by comparison, is closer to 2%. In short, not enough people are donating. This scarcity means that people waiting for a new kidney in Canada 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% chance of dying before they can receive a new one. In the UK, earlier this year the NHS Blood and Transplant health authority announced that the number of people in the UK donating organs after their death fell by 3% in 2014. To tackle this problem, Wales recently introduced a new policy known as presumed consent, which requires patients to opt out if they do not want to donate organs after their death.
Triage is a fundamental part of medicine in a system with limited resources only so many intensive care unit beds, only so many MRI machines. A new kidney or liver is among the rarest, most valuable resources. Shortages put doctors in the difficult position of deciding who gets which body parts.
In North America, liver donations are prioritised based on the Model for End-Stage Liver Disease, a system devised by the Mayo Clinic, a non-profit medical research group, to predict mortality risk. MELD, as it is known, measures various physical indicators and generates a score that evaluates the severity of a persons liver failure. That score aims for scrupulous fairness it is 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 persons life. It does not reflect their age or job, dependants or values. It does not discriminate between a convicted murderer and an innocent toddler. It is life-saving care reduced to bloodless arithmetic.
For decades, the primary source of organs has been dead 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 programme, letting patients know how remarkably safe the procedure has become. Since 2009, the paired donation programme 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 laparoscopically, through a small incision that reduces hospital stays to just a few days.
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 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 programme 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 or the result of more tawdry motivations. Some doctors fear that money could be changing hands. They worry that a recipient who takes an anonymous donors gift could be opening themselves up to extortion in the future. They wonder if the donor is mentally ill.
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Altruistic kidney donation is a relatively recent phenomenon. Potential donors go through a careful screening process, with an extensive psychosocial evaluation, designed to make sure they are in the appropriate state psychologically and financially that they are able to miss work while they convalesce. It is only permitted in a few countries, including the US, Canada, Australia and the Netherlands. In the UK, the practice was only legalised in 2006. Although these kind of donations are becoming more common, the numbers are still low. In the UK, around 100 people donate a kidney in this way each year.
Recently, however, there has 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 New York Times.
The internet has made this kind of public solicitation easier and far more commonplace. In the US, 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 be seen by 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 weve 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 the transplant programme for University Health Network. I think it will increase with time.
On April 26, 2015, the day of their daughters baptism, Peter Budziak and his wife, Betsy Amores, woke up to find eightmonth-old Delfina lying in her crib with a raging fever. She was on fire, Amores remembers. We knew right away that meant an infection.
The family lives in Vaughan, a city of roughly 300,000 people in Ontario, where Amores works for a cosmetics company and Budziak does graphics at the Canadian TV network Sportsnet. At two months old, Delfina had been diagnosed with a congenital liver disease known as biliary atresia. The disease closed her bile ducts, which left her jaundiced and weak. The family had been in and out of hospital ever since, trying to figure out how to manage their three-year-old sons schedule while camping out for weeks at The Hospital for Sick Children in Toronto. That morning, the family squeezed in Delfinas baptism, then rushed her to the hospital, known as SickKids, where they found out she needed a new liver.
Over the next few weeks, Amores stayed at the hospital during the day and extended family rotated on the night shift Budziak would sleep there on Tuesdays, Amoress brother on Wednesdays, Budziaks sister on Thursdays. Thefamily 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 Amores. The baby was sleeping no more than 15 minutes at a time, cryingasdoctorspierced her with needles and placed IVsintoher tender body. The idea of watching her waste awaywas unbearable.
Budziak, Amores and their families all volunteered to be tested as living donors, and one by one they were ruled out. Budziak had the wrong blood type, and Delfinas aunts and uncles were incompatible. Amores 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.
Budziak 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 theres no one left, he says. That was the lowest point in my life. Then he thought of Eugene Melnyk. Budziak had barely paid attention to Melnyks story when it was in the press a few weeks earlier, but he suddenly remembered the billionaires plea and the attention it had received. He opened his laptop and logged in to Facebook.
Okay, so its come to this, Budziak wrote on his wall. He explained Delfinas need for a transplant, the fact that none of the family members was a match. Theres bound to be someone out there, he wrote. If 55-year-old Eugene Melnyk was able to get over 500 willing donors, how many caneightmonth-old Delfina Budziak get? He included a photo of Delfina smiling in a crib, clutching a rattle in a chubbyhand. There was a plastic oxygen tube stretched across her upper lip.
When Budziak woke up the next morning, the post had gone viral shared by friends of friends of friends, passed down a chain of online acquaintances who were touched by Delfinas 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 had heard Eugene Melnyks story. Hetmanczuk knows Melnyk from the Ukrainian community, where they had worked together on fundraising initiatives. She had been moved by his plea, but because she was pregnant, she was not able to get tested as a donor. When Hetmanczuk heard about Delfina, she decided to get in touch with Budziak and Amores to see what she could do. I cant give you my liver, but I can help spread your message, she told them.
Hetmanczuk has worked as press secretary for two Canadian MPs, 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 a number of major TV networks, 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 Definas parents began their campaign, doctors re-examined Amores and told her the nodules on her liver could be removed. On June 18, surgeons performed the procedure, and Amores 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. Jacobs mother, Kaitlin CraigCrawford, is a 20-year-old single parent. She had createdher 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 Jacobs plight. His story gathered support online, but the media did not pay as much attention. The TV news programmes had already run one parent-seeks-donor tearjerker. A second one was a harder sell.
Like Budziak and Amores, Craig-Crawford was eventually able to find a living donor through her own network. In August, Jacob was released from the hospital, and he is nowhealthy. But a system that depends on generous people with PR skills or a fickle press or a social media audience makes some members of the medical community uncomfortable. Its like a beauty contest, says Udo Schuklenk, a bioethicist at Queens University in Kingston, Ontario. Its really macabre. If people are sufficiently devastated by what might happen to you and your family, youre more likely to get a donor.
It is 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 programme rests purely on emotion. Do you have a compelling tale? Are you able to elicit the compassion of strangers? How do you presentyour 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 in Maywood, Illinois, analysed 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 bias 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 ouronline lives.
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When the patient is not rich or famous or adorable, it can be harder to drum up sympathy. In January, 70-year-old Usman Qureshi found out that his liver was failing. He had come to Canada from Pakistan as a young man and worked for decades in construction. He had recently been diagnosed with nonalcoholic steatohepatitis, which caused his muscle mass to disappear and his stomach to bloat.
Qureshis 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 Melnyks story, it made him optimistic about his fathers 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 Delfinas Facebook page, trying to understand how he could duplicate its virality. He considered buying Facebook ads to increase his reach but decided he did not want his fathers 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 fathers 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 fathers life could depend on his ability to make a 70-year-old Pakistani immigrant as relatable as an ice hockey team owner or a baby girl.
When you ask physicians whether the current living donor system is fair, a look of discomfort often flickers across their faces. They pause. They speak with care. Well I dont know if its fair or not, says Atul Humar. But clearly there are more benefits than downsides.
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In early October, Eugene Melnyk appeared in public for the first time since his operation. Standing at the centre of the rink during the Senators first home game of the season, 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 fathers 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 luxury flat he bought in Toronto, a place close enough to the hospital that he can attend his regular checkups. When he got out of hospital, he found he had dropped 50lb, and now he is trying to get back toa healthy weight.
Since Melnyks public solicitation, the Senators have used their social media reach to help push other public campaigns. They retweeted Delfinas liver plea. In mid-October, a few days after Melnyks appearance at the hockey game, the teamtweeted another plea: Please take a moment to watch and learn about Usmans story hes 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 the Liberal party leader (and now prime minister) Justin Trudeau and other famous Canadians. 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 Usmans story.
At 2.45am on October 19, the hospital called. It 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 feltsurreal.
Andy does not know where his fathers 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 donors family, theyre our angels, Andy says. If its a deceased person or a living donor, either way theyre 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.
This is an abridged version of an article from the latest issue of Toronto Life.