By Julia Belluz - Friday, November 9, 2012 - 0 Comments
This is the second part of a series of articles adapted from the 2012 Hancock Lecture, “Who Live and Who Dies, Will Social Media Decide?” recently delivered at the University of Toronto by Julia Belluz. This installment looks at the use of social media for health campaigning about organ donation. Read parts Read parts one, three and four.
Anyone who opened a newspaper or turned on the television some time in the last eight months has probably heard of Hélène Campbell. She’s the 20-year-old Ottawa native who was admitted to hospital last July with collapsed lungs. The doctors said it was pulmonary fibrosis, which scars and thickens the lungs to the point of incapacity, death. Her only option: a double-lung transplant.
In January, Campbell was placed on the donor list. In the past, the story probably would have ended there. The would-be donor recipient would wait quietly for her call. But in January, Campbell turned to social media. She started a blog to document her journey and raise funds for the move to Toronto that was necessary as she awaited lungs.
Out of that initiative sprang a third goal: to raise awareness about the need for organ donors. She tweeted to the pop star Justin Bieber. He, in turn, shared her story to his 29 million Twitter followers. This absolutely silly, spontaneous interaction gave Campbell a global audience.
By Michael Friscolanti - Wednesday, October 17, 2012 at 11:20 AM - 0 Comments
Selling human organs is illegal, but would money be an incentive to get donors?
Last year, 285 Canadians died while waiting for an organ transplant. At last count, another 4,660 are staring at the same fate, desperate for a donor to save their lives. Yet despite so many public awareness campaigns (and the odd tweet from celebrities like Justin Bieber) donation rates in Canada are essentially the same today as they were in 2006: dismal.
A new study out of Alberta is asking the inevitable—but controversial—question: is it time to start paying people for their lungs, kidneys and hearts?
It is illegal, of course, to buy and sell organs or human tissue. But if the latest research is any indication, Canadians are willing to at least explore the idea of financial incentives—whether it be cash, tax breaks, or reimbursed funeral expenses. “It’s a difficult subject to broach, but I think we could get over that,” Dr. Braden Manns, the study’s co-author, told one newspaper reporter. “With the current system, where we ask people to come forward out of the goodness of their heart, we are clearly not getting enough organs.”
The researchers surveyed 2,004 Canadians, 339 health professionals, and 269 people affected by kidney disease. Members of the public were most open to the payout plan, with 70 per cent supporting the concept for deceased donors and 45 per cent saying it’s acceptable for living donors. (Health care workers were least receptive to the idea, at just 14 per cent.)
How exactly would it work? What would be the going rate for a healthy lung? Would such a program mostly attract the unsavoury and the desperate, such as drug addicts? Those questions are for another study. But Mann is certain about one thing. “We’re not talking about buying and selling organs in a hotel room in a shady area of Calgary,” he said. “What we’re talking about is a third-party regulator that would offer compensation.”
And if that regulated market ever becomes a reality, it could prove to be a literal life saver.
By Julia Belluz - Tuesday, September 18, 2012 at 5:02 PM - 0 Comments
Just when you thought Facebook couldn’t become any more omnipotent: In May, the social networking giant announced it would allow users to declare their organ donor status on their profiles and link to donor registries in the hopes
of becoming “a big part of helping solve the crisis out there,” as CEO Mark Zuckerberg put it then.
At the time, Science-ish mused about the role the social network could play in getting more people to donate. Today the tool launches in Canada, Mexico, Norway and Belgium—that’s 18 countries in total—and we actually have some preliminary data on the “Facebook effect.”
According to David Fleming
, CEO of Donate Life America, the initial response after Zuckerberg’s announcement “dwarf[ed] any past organ donation initiative.” In California, for example, 70 people each day usually register online as organ donors, while in the 24 hours following the Facebook announcement, 3,900 Californians did the same. But, according to a new report from the U.S., “the dramatic increase in registered organ donors was quickly followed by a dramatic decline. Within two weeks, the rate of registration of new organ donors returned to previous levels.”
By Jaime Weinman - Thursday, May 31, 2012 at 11:41 AM - 0 Comments
Canadian comedy legend on life in the fast lane, his hepatitis C diagnosis, and the miracle he is praying for
Mike MacDonald has been described as a “comedy legend” and inspired a generation of Canadian stand-up comedians. He holds the record for most consecutive appearances at Just For Laughs, the Montreal comedy festival. But last year the 57-year-old was diagnosed with hepatitis C, and following a serious infection, his liver and kidneys have shut down. He posted a message on Facebook seeking a live donor with type-O negative blood for a liver transplant. Friends have created an online campaign to raise money for his medical bills and there has been an outpouring of support. It overwhelmed MacDonald, who spoke to Maclean’s from his mother’s home in Ottawa.
Q: Were you surprised by this campaign?
A: It’s been totally unreal. Like I said in my thank-you note, I feel like Jimmy Stewart in It’s a Wonderful Life. It’s been beyond my wildest dreams and I can dream with the best of them. It’s been less than a week and the response has been amazing. Thank God for Facebook. I have a bit in my act about the top three uses of the Internet: No. 3, hate-mongering, No. 2, the downloading of free music, and the top one is porno. But something like this, this is what the Internet was intended for: to help people, to pass on information, the positive things in life.
Q: Before you had to stop working, how were you doing financially?
A: Well, I was trying to work as much as possible, but for the last two or three years, for the first time in my entire career, I was starting to feel the economic crunch of the time. Especially the corporate gigs, the gigs where sometimes in one night I could make what I could make in a whole month in the clubs. They were dwindling because major corporations weren’t doing as well as they could, so they weren’t having the big celebrations and hiring the big entertainers. And then with the complications of being bipolar and manic depressive, it seemed to go downhill. So financially, we were in and out of debt, with a heavy credit-card debt. To my wife’s credit, she pulled and scratched and crawled our way out of the debt.
Q: When did you find out you had hep C?
A. My father passed away in July after a long bout with diabetes. When I went up there to Ottawa about a month before, I’d displayed some slurred speech, and I was dropping things and tripping, which is uncharacteristic for me, because I’m very physically adept in my comedy. My wife insisted that I check in with a doctor. I checked in with the family doctor in Ottawa, they did some tests, and they said “some of these numbers are a little weird.” They checked it further, I went to a specialist, and they diagnosed it as hep C. That changed everything. Now it’s this situation where I can’t work at all and I’m stuck in Ottawa.
Q: Did the doctors say how you got it?
A: The No. 1 way is intravenous drug use. Going back 25 years, I went through my bout of trying to emulate my heroes like John Belushi and Richard Pryor, getting involved with heroin addiction and cocaine and all that stuff. I got through all that and did anti-addiction documentaries for the CBC, figuring it was the least I could do. I was so lucky I got through all that and I’m still alive. The doctors said my symptoms should have shown up sooner. My friend who went through hep C, when he found out about it, he said, “This is so weird. About nine or 10 other people have popped up from that scene alone who have hep C.” It’s like a generational time period thing, almost a mini-epidemic. I read somewhere that hep C is something that anyone from the ages of 45 to 60 should be tested for, because there’s something about that era.
Q: Do you think comedians take drugs in part to emulate other comedy idols, like Belushi, who died of an overdose, and Pryor?
A: I think that was a factor. I think another thing is that you go back to the hotel by yourself, and you have the choice between picking up somebody else, getting into that debauchery, and using the booze and the drugs to subside the loneliness. It’s all self-destructive. It took me a long time, especially after the drugs, to learn how to be by myself.
Q: Is it necessary for a Canadian performer to move to L.A., or is it possible to make a career in Canada?
A: I certainly thought, when I moved there, that it was necessary. There was all that “go to Hollywood” thing in the back of my mind. In hindsight, the only reason to go to L.A. is if you want to be on an American sitcom or in an American blockbuster movie. You can make films just about anywhere. I have bad luck stories about my experiences in L.A. There was an agent who approached me and said, “I always liked you, I thought you deserved to be farther up in your career than you are.” He said, “I just got my two top clients, John Candy and Steve Martin, five years of work, and now I would like to concentrate on you.” The next night, the guy wakes up in the middle of the night, gets a glass of water from the fridge, has a heart attack and dies. I’ve got a million bad luck stories.
Q: Why did you decide to come back?
A: It just feels right. I’m a Canadian citizen. I started here, I’ll end here. I used to exaggerate a little bit with the jokes I made about Americans, but now I don’t have to exaggerate any more. They’re really crazy down there!
Q: Has anyone come to visit you?
A: One or two close friends that I’ve known since high school. But so many people want to come and see me, so many people want to talk on the phone, so many people have offered to drive me to the health food store. When we were in B.C. or Vancouver Island, there were places where you couldn’t throw a rock without hitting a health food store. But here in Ottawa, when you start looking for salt in everything, boy, you realize that the salt barons are out there laughing their asses off at the heroin and coke dealers. They run their products with impunity. They make tons more money than anybody else, their product is everywhere. At Tim Hortons the bottled water has five milligrams of salt in it.
Q: Before people started calling and donating, were you aware you had so many friends and admirers?
A: No. There have been people, especially comedians, who I’d met once or twice at Just For Laughs, and I thought there would be politeness, but I had no idea of the deep respect and concern or the outpouring of love and prayers they’d have now. It’s been a humbling experience to say the least.
Q: Have you tried over the years to encourage younger comedians?
A: Not so much, but according to the messages, apparently I have. People remind me of stuff. I would do little things, like have these seminars. I would sign up a maximum of 10 amateurs, and we’d go through their act, examine it, take it apart, and answer any questions. And by a collective think-tank kind of thing, they’d all walk out learning something. To me it was just a little thing. But according to the messages, it was such a big deal. For some of them, it started their careers. But if you’d asked me before all this happened if I had any influence, I’d have said, “I don’t know. Maybe. One or two.” It’s comforting to know that I wasn’t an asshole every second of my life, that at least I did something good. I have a tendency to remember the bad times more than the good. But it’s like one of my favourite song quotes: “Only good people wonder if they’re bad.”
Q: Is there anything you see differently about your life now?
A: Absolutely. This has been a life-changing experience. I have a responsibility, if I get the miracle ending that I’m praying for, to use that gift properly. There’s also the realization that if you touch people in a positive way, you can touch people in a negative way. Let’s say you’re in a restaurant, and the waiter comes over and says, “I’m sorry, I got your order mixed up earlier.” Instead of saying “Well, yeah, maybe next time you’ll do better,” say, “It’s okay, you came with the right order and everything’s fine now.” Maybe he’s had a bad day, and your answer could be what makes him go and be mad at somebody else, to quit his job, to take the drugs that send him into the spiral.
Q: How do you look back on your career?
A: There was a time that I wished I would have been more famous, made more money. But who knows? I could have killed myself with more money and more fame. I’ve always enjoyed the fact that I’ve been most popular in Canada. At my level of fame, people would come up to me, and say, “I loved you on Just For Laughs,” and then they’d walk away. Where I’ve been out in public with friends that are much bigger and more famous and popular than I am, like Tim Allen and Drew Carey. People come up and expect the world from them. And I’m sitting there going, “I am so glad I’m not you right now. Even though you have tons of money, and I’d love to be able to buy my wife a new house, I don’t envy this moment at all.”
Q: Will you keep doing Just For Laughs?
A: They’re arranging a special benefit for the 30th anniversary. Originally, when they asked me last month, I had to turn them down. But lately I’ve been feeling so positive with the energy, that I said that I’m really going to try to at least get down there just for the day. I’ll take the train, because I can’t fly, and try to appear at the benefit, because Montreal’s not too far from Ottawa. My wildest dreams would be to stand up on stage and just do one joke, to get a laugh, to thank the audience for being there and thank the comedians for working for free.
By Julia Belluz - Friday, May 11, 2012 at 11:38 AM - 0 Comments
“Starting today, you can add that you’re an organ donor to your timeline, and share your story about when, where or why you decided to become a donor… (Facebook) can be a big part of helping solve the crisis out there.”—Facebook CEO Mark Zuckerberg, May 1, 2012
Facebook is officially in the business of organ donation. Since the social media giant’s CEO Mark Zuckerberg announced a new feature that will allow users in the U.K., U.S. and Australia to list their organ donor status, there have been reports of real-life donor surges. In the U.S., on the day of the announcement, more than 100,000 people
declared on Facebook that they had decided to be organ donors, and some 22,000 followed a link on the site that connects to online donor registries. The response, said the chief executive of Donate Life America, “dwarfs any past organ donation initiative.” Though the feature is not available to Canadian Facebookers right now, the news reportedly caused a spike here, too. Of course, we don’t yet know whether Facebook will have a lasting impact on donation rates, or whether announcing one’s donor status will lead to an actual increase in donations over time. Still, the phenomenon raised one perennial question: How do you actually get people to donate?
By Gustavo Vieira - Monday, April 9, 2012 at 12:36 PM - 0 Comments
Hélène Campbell raised awareness of organ donation with a successful social media campaign
Hélène Campbell, the Ottawa woman known for raising awareness about organ donation, is recovering after a seven-hour lung transplant operation. Two days after receiving a pair of transplanted lungs, Hélène Campbell has been able to breath “a bit on her own,” according to her mother, Manon Campbell, who’s taken over the twitter handle @alungstory since her daughter went into surgery.
Campbell was one of the more than 1,500 people waiting for an organ donation in Ontario, according to the Trillium Gift of Life Network, but made her case famous by raising awareness of organ donation with a social media campaign that got responses from celebrities including Justin Bieber, Ellen DeGeneres and Don Cherry.
Campbell had discovered she had idiopathic pulmonary fibrosis last summer when she collapsed on a hiking trail. She had been on a waiting list for organ donations since July.
By Brian Bethune - Tuesday, March 13, 2012 at 10:44 AM - 0 Comments
On the debate over when life really ends, and the possibility cadavers can feel pain
Dick Teresi is the former editor of Science Digest and author of The Undead, a newly released and unsettling inquiry into the demands of organ transplanting, and when and how the medical community decides someone is dead.
Q: You began this project to explore how death is now determined, assuming that medical advances have surely pinned down the moment a person dies. What did you find?
A: That determining death has been a problem since the beginning of civilization. In ancient times, doctors and others who mistakenly called a living person dead were often stoned. Death was not the domain of doctors; it was too important to be left to them. People set up vigils over their relatives and friends to make sure they were dead, because one of the worst things one could do was bury a living person. Doctors became more involved, but the real change occurred in 1968: a committee of 13 men at Harvard Medical School endorsed brain death as legal death, and this became U.S. law in 1981. Doctors were now the sole arbiters of who is dead and who is alive, and they lowered the bar for death—it is now easier to be declared dead than any time in human history.
By Julia Belluz - Friday, March 9, 2012 at 3:37 PM - 0 Comments
Sometimes, there’s no better place for science-ish speculation than at the dinner table. Last weekend, my mother was offended that she didn’t know her children and husband had signed up to donate their organs. My father, a man of reason, couldn’t see why one would get emotional about the issue: “What does it matter once we we’re dead?” That’s when my dear aunt piped up: she insisted she’d heard somewhere it’s possible to feel pain while the organs are extracted in that final act of altruism.
The claim seemed absurd at first. But Science-ish learned that she was actually speaking to a wider controversy about organ donation and the complex question of when a person is dead. In fact, as Dick Teresi, author of the forthcoming book The Undead, told Maclean’s in an interview for this week’s issue: “It’s easier to be declared dead than ever before.” He also added: “(Deceased donors’) brain stems aren’t working, but vital organs still function—you’ll pee, maintain your body temperature, and your wounds will continue to heal. You may—it’s not certain, but you might—feel pain during surgery. You’re in this weird undead zone. It’s during that time your organs are taken.”
So if your organs are working, are you dead?
Science-ish called Dr. Andreas Kramer of the Hotchkiss Brain Institute at the University of Calgary to find out. He explained that organ donation used to be performed in Canada only in “neurologically devastated” individuals who fit the criteria of “brain death” that Teresi referred to in conversation with Maclean’s. Brain death was a concept established at Harvard in 1968, when a committee of researchers determined that a person could be declared dead legally if, among other things, blood flow to the brain stopped even though other organs continued to work. Needless to say, people who suffer brain deaths are perfect candidates for organ donation.
As Dr. Kramer explained: “(With brain death) there is no evidence of brain activity, even very basic physiological functions, such as respiration. The only reason that the heart continues to beat is because they are on life support at the time that they progress to brain death and a ventilator continues to breathe for them.”
More recently, though, another definition of death has cropped up: cardiac death, or the irreversible cessation of circulatory and respiratory function. In other words, when you’re heart stops beating. Today, in Canada, either of these two conditions are sufficient to declare a person dead and treat her as an organ donor.
So an individual—say, the sufferer of a stroke—can meet the criteria for cardiac death, despite the fact that they are not brain dead. In this case, after life support is discontinued and palliative care administered, Dr. Kramer explained, doctors wait to see “if the patient’s heart stops within a predefined period—usually two hours—then they can proceed to organ donation.” After the heart fails, physicians (who are notably not transplant surgeons so there’s no conflict of interest) wait for several minutes before declaring the patient dead.
This is where things become more interesting: that wait period varies across jurisdictions. “In Canada, the U.K., and Australia, almost all hospitals use five minutes,” said Dr. Kramer. “In the U.S, some hospitals use two minutes. In Europe, some hospitals use ten minutes.”
What about the pain?
Given the blurry lines around the final curtain call, can someone who meets the clinical criteria for brain death or cardiac death be aware of pain as their organs are extracted?
In the case of cardiac death, according to Dr. Neil Lazar, an associate professor of medicine at the University of Toronto who has written about deceased organ donation: “if you ask whether a person whose brain has not been receiving blood flow for five minutes is able to experience pain, the answer to that is that it’s very unlikely. The brain is no longer getting blood flow. . . You can ask, ‘What if somebody came along and tried to restart the heart or artificially got blood flowing to the brain–would that brain be able to recover to any extent?’ The answer to that is uncertain.” He emphasized that the patient is almost always so close to the edge that any kind of resurrection would be next to a miracle.
The possibility of feeling pain is extremely remote with brain death as well, for two reasons. Declaring someone clinically brain dead requires, among other things, making sure that the patient does not respond to external stimuli, including pain. “So it’s hard to imagine under those circumstances there would be some unconscious awareness or pain,” said Dr. Lazar.
Could one study pain in dead organ donors? Dr. Kramer said, “one could theoretically use electroencephalograms (EEG) in donation after cardiac death patients at the time that death is declared—five minutes after cardiac arrest—but this does not definitively tell you whether a patient has any awareness.” Besides, in brain dead patients, the EEG is flat because there is no brain activity, and with cardiac death, the EEG usually flattens in less than five minutes. So while we don’t have evidence to prove an organ donor can’t feel pain, we also don’t have evidence to indicate that they could, and the latter is extremely unlikely.
All of this makes Science-ish wonder about the big question: how do you really know when a person is dead? Is it about the cessation of brain function? A heart beating its last? “If people say you have to be dead to be an organ donor, there will always be individuals who will say, ‘I don’t agree with that diagnosis of death. The heart is still beating, so how do you call that person dead?’ ” said Dr. Lazar, “death is a social construct. It just so happens that doctors are the professionals who have been given the authority declare it.”
Science-ish is a joint project of Maclean’s, The Medical Post, and the McMaster Health Forum. Julia Belluz is the associate editor at The Medical Post. Got a tip? Seen something that’s Science-ish? Message her at firstname.lastname@example.org or on Twitter @juliaoftoronto
By Kate Lunau - Tuesday, October 20, 2009 at 6:16 PM - 6 Comments
How an early-morning radio interview brought together a dying man with the woman who would save his life
On a cool morning last March, Kingston-based artist Sally Milne went on a local radio show to plead for her husband’s life. Suffering from a liver disease that was getting progressively worse, Christopher Mueller, a breast cancer researcher at Queen’s University, desperately needed a liver transplant; Milne, who’d already approached friends and family with no success, found herself on K-Rock‘s morning show, hoping to find a suitable donor. “They asked what Chris means to me,” Milne recalls. “I said, ‘We’ve been married for 22 years.’ ”
Sherrie Edmunds had never met Milne or her husband. But, months later, it was her liver donation that saved Mueller’s life.