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YouTube spreads 'misleading information' about experimental stem cell treatments

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Health Canada has warned unlicensed clinics are offering unauthorized cell therapies and making unproven, outsized claims that may pose serious risks to people

In an appearance last year on comedian Joe Rogan’s podcast, Mel Gibson raved about how a trip to a Panama stem cell clinic had led to his ailing 92-year-old father’s seemingly superhuman recovery.

Gibson was skeptical at first, he told Rogan. “I’ve heard things about this,” he said he remembered thinking. “You grow a spare mouth on your head.”

That didn’t happen. Instead, after a double dose of stem cells extracted from umbilical cord blood was injected into his father’s hip, he started walking again, Gibson reported. His eyesight improved, his “cognitive power” improved and even his prolapsed heart valve healed, the actor said.

The YouTube version of the podcast episode has had 2.5 million views to date, making it the platform’s third-most viewed video on stem cells.

YouTube testimonials have become a potent marketing tool for the burgeoning stem cell industry, according to a new study. With over one billion users, the Google-owned video giant has greater reach than any television network, the authors wrote in the journal Stem Cell Reports , “and presents a formidable platform to market unproven SCTs (stem cell therapies.)”

“Providers often use misleading claims, hard sell promotional techniques, and base efficacy claims on patient testimonials.”

Clinics claim the pricey therapies (from several thousand dollars at Canadian clinics, to US $6,000 or more at American ones) can decrease inflammation and regenerate diseased or damaged organs and tissues.

Video testimonials and infomercials can be particularly persuasive. They tell a story. The problem is that the power of the personal narrative “often overwhelms the data,” said Timothy Caulfield, professor of health law and policy at the University of Alberta and a co-author of the new study.

“It becomes very clear that patient testimonials, patient narratives, are a huge part of the marketing strategy,” Caulfield said.

“But despite all of the pop culture representations, despite all the excitement around these therapies, there are very few ready for the clinic,” he said. “If you see a stem cell therapy being marketed in your newspaper, on YouTube, it’s almost for sure an unproven therapy and, at best, experimental.”

In one case involving a Florida clinic, three women were left blind after stem cells were injected into their eyes.

Legitimate researchers believe that stem cells have potential in growing new tissue to replaced diseased or worn out ones. (The clinic that treated Gibson’s father has published papers on its website, including a small study last year that reported symptom improvements in 20 people treated for MS.)

"We need to use narratives, we need to use interesting videos in order to get across the good science," - Timothy Caulfield, University of Alberta

However, Health Canada has warned unlicensed clinics here are offering unauthorized cell therapies and making unproven, outsized claims that may pose serious risks to people. The agency itself has been criticized for not doing enough to crack down on the industry.

For the new study, the American and Canadian collaborators searched YouTube for videos of five conditions — ALS, cerebral palsy, multiple sclerosis, Parkinson’s disease and spinal cord injury — where people had sought unapproved stem cell therapy.

Of the 159 they analyzed, all but three were published by clinics providing unproven therapies (the patient was the publisher in the other three.) The majority of the clinics were in India, followed by the U.S. and Mexico. The majority of the people in the videos were from the U.S., followed by India and Canada.

In the videos, people described being injected with adult, bone marrow-derived, umbilical, fat, placental or fetal stem cells.

Risks were mentioned in only 10 per cent of videos, and even then downplayed, according to the study.

Former patients described how their stem cell treatments (from one or two injections, to eight) led to increased appetite, strength, movement and flexibility. People with MS hoisted walkers over their heads, according to Wired’s review of the study. Others said their prayers had been answered.  They used words like “salvation.” Many said they owed their lives to the clinics and staff. One said that, just two hours after the procedure, “I started walking straighter. My energy came back and I’m amazed at how quick it happened.” Many said they turned to stem cells out of desperation. (The Rogan video with Gibson was not analyzed because, technically, it wasn’t a patient testimonial, and more an interview of a family member. But it is mentioned in the paper.)

“Of course testimonials are powerful, because there’s a story being told,” Caulfield said.

But people need to understand how science works, to help them see through the videos, and science could benefit by using the same kind of creative communication strategies, he said.

“We need to use narratives, we need to use interesting videos in order to get across the good science,” he said. “It’s starting to happen. But we need more of it to fight this.”

• Email: skirkey@postmedia.com | Twitter:

Copyright Postmedia Network Inc., 2019


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