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How celebrities, personal stories and misplaced hope sell questionable treatment

November 05, 2015

What do AFL footballer Adam Goodes, tennis champion Rafael Nadal, Canadian ice hockey legend Gordie Howe and reality TV personality Kim Kardashian have in common?

They’re all celebrities featured in sensationalist media stories about unproven stem cell therapies, from Rafael Nadal’s stem cell injections into his back to Kim Kardashian’s $500 pre-wedding ‘vegan stem cell serum’ facial.

Canadian health law and policy expert Professor Timothy Caulfield has found that celebrity culture has a profound influence on the debate around stem cell treatments. Celebrity stem cell treatment stories that don’t question the science raise public expectations that these treatments are safe, effective and should be more widely available.

In Australia, Monash University sociologist Professor Alan Petersen has interviewed dozens of patients, patient advocates, clinicians and carers about sources of information for people considering experimental stem cell therapies or travel for treatment—with surprising results.

Both Timothy’s and Alan’s research show the power and influence of celebrity and personal stories, and their wildfire spread through media, social media and the internet.

Timothy Caulfield—author of the book ‘Is Gwyneth Paltrow Wrong About Everything?’—is a researcher at the University of Alberta. He studies the intersection of celebrity, popular culture and science, with a particular interest in the media coverage of celebrity stem cell treatments.

“This may seem like a frivolous way to explore what is a very serious topic, and that is the issue of stem cell tourism or the people accessing unproven stem cell therapies, but I think it is an important part of the story,” he says.

His research found that media stories had little, if any, critical discussion of the science of these treatments. Articles assume the treatments work and are safe. Consequently, the tone of the media debate around unproven stem cell treatments has shifted to one that suggests effective treatments are being withheld from us.

Timothy’s analysis of media coverage and reader comments around Gordie Howe’s ‘miraculous’ stem cell treatment, published in the journal Stem Cell Reviews and Reports, suggests uncritical coverage creates patient expectations and may have an impact on policy discussions.

“Of course, stem cells are effective and have been used for decades for a small number of conditions, such as bone marrow transplants for the treatment of some blood cancers. But the available evidence doesn’t match the hype and marketing of companies offering treatment.”

Tim is concerned that some clinics are capitalising on raised patient expectations.

“I call this phenomenon ‘Scienceploitation’”, says Timothy.

“Where there is a legitimately exciting area of science and the language around that area—stem cells and regeneration—is exploited to market unproven therapies, whether it’s a skin cream or something more severe.”

Alan Petersen has found that doctors aren’t the sole source of information for patients researching treatment options. We are now in an era of borderless health care—people can get information over the internet.

Alan’s research has identified the language of hope in the debate around emerging stem cell treatments, made more powerful by the broad positive psychology movement. With colleagues, including Stem Cells Australia’s Megan Munsie, he conducted a research project that interviewed 48 patients and carers about their stem cell tourism and treatment decisions and what or who influenced them. They also interviewed 27 scientists, stem cell treatment providers and patient advocates.

“We’re all expected to be hopeful,” says Alan.

“In the area of stem cell technologies, there is hope attached to what the technologies might offer in the future.”

Patient testimonials used in the marketing of clinics, patient advocates and other people who have travelled for treatment encourage hopeful expectations. Contributing to this technological optimism are biotech companies courting venture capital and scientists who may oversell the ‘social impact’ potential of their research in an increasingly competitive grant landscape.

Alan recognised the role of information resources—like patient handbooks or warnings on the risk of medical tourism from peak health bodies—in raising awareness in the community, but noted the limitations of this approach.

“When we talked to patients we didn’t get a sense that this was a powerful source of information for people making these decisions. They were more influenced by people they knew or from websites.”

Despite concerns over the financial and health risks of medical tourism, Australians are still travelling to China, India, Germany, USA, Thailand and Panama for stem cell treatments.

It’s a complex situation with no easy solution. But Alan suggests a starting point is to have a better means of bringing these groups—patients, treatment providers, researchers, peak health bodies and doctors—into constructive dialogues.

Timothy Caulfield and Alan Petersen were the speakers at the recent Stem Cells Australia forum ‘Selling stem cells: the need to reconcile hype, hope and evidence’, hosted by Associate Professor Megan Munsie.This feature is based on the forum. See the lecture capture video of the forum online.

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