Is Hélène Campbell right about the organ donor crisis?

Part two in a series on life and death on the Internet

by Julia Belluz

Helene Campbell during a conference in September announcing Facebook would allow users to indicate their donor status (Adrian Wyld/CP)

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 onethree 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.

The exchange with Bieber also led thousands of Ontarians to make the very personal decision to become organ donors.

Momentum really gained when Campbell caught the attention of Ellen DeGeneres and the Ellen Show. She was featured on Ellen, and following her appearance, received messages from people as far as South Africa and the Swiss Alps wishing her ‘fresh new air for her lungs,’ telling her she had driven awareness about organ donation to another level.

Hers was a gripping and emotional story. A heroic one. In her most dire moment, when she was at her sickest, she looked outward and asked how she could help society.

Every day, we followed her every step to the transplantation and afterward. Donor rates reportedly continued to surge in Canada, and probably elsewhere.

When Campbell finally received her new lungs, her leave from hospital was a media event, and she was even welcomed back to her hometown by the federal health minister. The minister took the opportunity to announce $10 million in funding to support a national transplant research program.

This coverage, this attention on organ donation, the research program, were surely positive, right?

An Ontario policymaker once told me that celebrities and popular media campaigns apply the kind of pressure that get things on the policy agenda—maybe the most powerful pressure—but then it’s a question of what actions are actually taken and the quality of the policies that are made.

In this case, while Campbell’s crusading and the media around it were helpful in many ways, and raised awareness about an important health issue, it may have obscured or distracted us from some of the donor problems we ought to be examining as a society, some of the policy questions we ought to be grappling with.

Ones that could influence, even save, many lives.

Campbell’s message is: There’s a gap in the number of organs that are needed, and the number of people who sign up as donors, and if only we could bridge the gap, we’d shorten waiting lists, we’d alleviate the chronic shortage.

This logic comes through in other social media forays into organ donation, such as Facebook’s. In May, Facebook CEO Mark Zuckerberg announced that the social media giant could play a role in solving the organ-donor crisis: users would be allowed to declare their organ donor status on their Facebook profiles, and to connect to local donor registries.

Facebook said if people see their friends signing up, they might be more inclined to do so as well. And when the time came to make decisions about what to do with the remains of loved ones, families could look at Facebook profile for answers.

When Facebook came out with the announcement, this seemed like a promising proposition. Network science, or “the science of social pressure,” tells us that the behaviours of our friends and even friends’ friends spread through networks, influence our personal health choices—from whether we smoke and exercise, to our obesity.

Theoretically, a declaration of organ donation on Facebook could spread through the billion-person social network and get many more people signed up on donor registries to give up their organs.

But early data from the U.S. suggested Facebook may not be the panacea for the organ-donor crisis after all: While there was an initial spike in donors in the four states that were looked at—interest trailed off almost immediately.

This may not be a surprise to the research community. The literature on what gets people to sign up for organ donation, and what actually solves organ-donor crises, suggests it’s a murky and complex equation, determined by culture and the structure of local health systems.

Saving lives through organ donation is not even necessarily accomplished by getting people to declare themselves donors.

For example, some have argued that “opt out” legislation—or presumed consent—would increase donation rates in countries. This means you wouldn’t even have to sign up; everyone would be a donor, and that would be it. Problem solved. But then studies comparing opt-in to opt-out regimes found that countries with presumed consent don’t necessarily have higher donation rates.

In fact, some places with opt-out systems, like Sweden, have extraordinarily low donor rates. And bringing in an opt-out system has actually had the opposite of the desired effect in some countries, such as Brazil. There, donor rates actually went down because people didn’t trust the government’s intentions and there were accusations of body snatching.

Spain is often deemed the gold standard for organ donation with its enviable donor rates and opt-out policy. Spain introduced its opt-out law in 1979 and only 10 years later did rates start to increase. That was when Spain founded a national transplant organization.

It wasn’t just the opt-out legislation—or getting more people on the donor registry— that increased the donation rate in the country. It was an entire health-system overhaul. It was a combination of legislation, transplantation system re-organization and infrastructure investments, as well as availability of organs and awareness about organ donation and transplantation, that made Spain the envy of the organ donor world. They invested in education, and starting carving up dedicated resources in hospitals for organ donation.

One Alberta nephrologist who studies donor systems, Dr. Scott Klarenbach, pointed out that there actually isn’t good evidence that donor registries work to improve organ donor rates. “Donor registries might be a waste of money: they take a lot of resources to set up and maintain and it’s not clear when you have them running how much they impact actual donor rates.”

He and other Alberta researchers, including Tim Caulfield, have been calling for an evidence-based approach to organ donation, suggesting that Canada rethink its assumptions. For example, their research shows the public accepts financial incentives for living and deceased organs, so they’ve been asking governments to rethink the assumption that donation ought to be altruistic. As Caulfield put it: “This is about saving lives. We need to move beyond speculation.”

We have to study and identify the bottlenecks in the system that lead to our subpar organ-donor rates. If we don’t have a good system in place to reach out to families about the organ donation of a loved one in time, if we don’t have hospital beds to do the procedures, if there are inadequate links between the information on registries and health professionals who need that information the point of care—adding names to a registry won’t mean much.

To be clear: I’m not suggesting Hélène Campbell or Facebook’s executives should be responsible for communicating nuanced research evidence. These ideas are not reducible to sound bites and they are not the stuff of viral social-media movements. But that’s exactly why we need to question these campaigns, and the evidence that influences our health choices and policies.

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 julia.belluz@medicalpost.rogers.com or on Twitter @juliaoftoronto




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Is Hélène Campbell right about the organ donor crisis?

  1. Or we could be cloning body parts, and save anybody else from going through this nightmare.

    • That certainly seems like where the technology’s going to go, so all of this is really a stop-gap measure until they can replicate all needed organs efficiently and effectively.

      • Yes, but it’s taking years and there’s no need for the delay.

        • My understanding is that, at least with the technology that I’ve seen, is that it’s primarily a research problem, not a political or funding one. They’re already using the technology to fabricate bladders and some other simple organs out of the recipient’s own bladder cells (or whatever organ they’re making). There are no stem cells from fetuses or anything like that, so there’s no significant controversy surrounding the technology, at least that I’m aware of.

          I saw a cool TED talk by one of the lead researchers on Netflix. Sorry I don’t have a name for the guy.

          • Heh….I luv TED talks, so I’ve probaby seen it, but that’s why I don’t understand it taking so long. It ought to be in routine use by now.

            No donors, no rejection, no controversy….’we have the technology’ as they say.

            Hell it was Canadians that discovered stem cells….why aren’t we doing more?

            Maketh me mad when I see stories like this.

          • As far as I can recall, it was already working with simple organs, but that they had some issues to work out with more complex ones (heart, lungs, etc.). It sounded like it was just a matter of time. It is frustrating when something so amazing is just out of reach, at least for some of them.

            I wonder if it will become common to have organs pre-cloned so they’re available for emergency surgery. Might be another healthcare divide between the rich and not. Anyway, a random thought.

          • I would say when the Religous Right gives up!

          • Well they were working on it, with early success….but I haven’t heard anything about it lately…..so I don’t know what stage they’re in. The sooner the better!

          • Because of President Regan,we are U.S Canada clones!Monkey see monkey do!

          • We’ve never been US clones….and certainly nothing to do with Reagan.

    • Hey dont freak out the religous people!

      • LOL somebody needs to freak them out….they are right off the deep end anymore!

  2. Every body in the organ donation process gets paid except the organ donor. The surgeons get paid. The nurses get paid. The hospital administrators get paid. The pharmaceutical companies get paid for their drugs.

    Pay the damn donor or the estate of the donor.

    • Living donors in most of Canada can already apply for funding for travel, accomodation and lost income. As well, EI gives 15 weeks of sick leave for donors. And any medical expenses incurred by a living donor are tax-deductible. As far as deceased donors, do you really think people who don’t sign their cards now will suddenly do so on the very slim prospect of their family getting a few thousand bucks? Of all the deaths in canada last year, perhaps 1 or 2000 were actually elegible to be donors, and not even all of those could be used.

      • Is it true some colleges in the states will pay for your dead body,Canada or US.

    • Dont you feel everyone should give their organs out of the goodness of there hearts or mandatory donations for all!

  3. A national transplant list would be way more help. Right now, the disparity in waiting times means a 1 year wait for a kidney in BC can be a 6 year wait in Toronto. There are three seperate lists in Ontario laone, done by hospital.
    Social media helps, but eeven if we get more donors, there needs to be bed space in the transplant usits, surgery time and extra staff for follow-up care. Transplanters are on anti-rejection drugs for life, and need a lot of aftercare.

  4. While I’m happy that Helene has been doing better since her transplant, I was bothered by the language surrounding it. She often described it as a miracle, which bugged me. Not because I don’t share her religious views, which i don’t, but because it’s not a miracle, it’s a tragedy. Her illness is a tragedy, and more importantly, the death of the donor is a tragedy. The last part is something we tend to ignore in our culture.

    There’s a classic article written on the subject:
    Lock, Margaret. “Displacing Suffering: The Reconstruction of Death in North America and Japan.” Daedalus 125.1 (Winter 1996): 207-244

    • I agree!

  5. The recent Jacobs case in the US is about organ donation. The parents sued and received $.640,000. I believe this case sets an important precedent for families to claim part of the transplant industry’s “haul” from their organ harvested relative. With this precedent in place, a family who wishes to, can hire a lawyer, wait a year or two and recoup part of the proceeds of their relative’s organ sales (drs’, nurses’ paychecks, pharmaceutical etc). At the same time as this notching up is taking place, doctors are also talking about giving the donors analgesics so they don’t feel the harvesting surgery. Organ donation will evolve to become “Organasia” or death from organ harvesting. At present, the idea is put forward that the donor is a corpse but that isn’t true. He is on life support and often, as in the case of the Jacobs’ son, is still alive and sentient when he is harvested.

    • Not Canada,you are lucky if you can sue for anything,and if you do you will wait a long long long time to get a decision,and if you win,the amount is trivial,compared to the US,this is a nonissue!

  6. Please, have you some data to confirm your statement about Brazil? Actually, the opt-out clause was one of the contributing factors to reduce lines for cornea transplant to zero, for instance. Your view could be a valid one, but it does no good throwing short lines without verifications, as Brazil already has your own national transplant organization (and regional organizations reporting, all of them accountable to the national one). When Brazilian government passed the “opt-out” clause, inside the new transplant system act, there was a surge in “opt-out” options, because the previous system only allowed the “opt-ins” to donor, but with a public communications policy (forecasted inside the new system), this surge was short (1 to 2 years). As Brazil is a very diverse country, what can help you understand the policy changes is to see regionalized numbers, mainly from states like Sao Paulo, Minas Gerais, Parana e Rio Grande do Sul, because other states had, during this time span, had general difficulties in managing public healthcare systems (for instance, general strikes or political problems affecting healthcare systems).

  7. All so called voluntary organ donations should be mandatory for every man woman and child in Canada,their is no excuse!

  8. Visits to our website increase with every interview Helene does.
    Her contribution is making a difference regarding the importance of
    Registering to be an Organ donor in Canada.
    sincerely

    James W Breckenridge
    President and CEO
    the Canadian Transplant Society
    a Registered Canadian Charity
    www. cantransplant.ca

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