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Stem cell hype and risk

An increasing number of Canadians are becoming medical tourists in search of stem cells. But is it worth the cost and the risk? @NightshiftMD weighs in.

Medical tourism is on the rise in Canada. The Fraser Institute says more than fifty thousand Canadians per year are traveling abroad in search of experimental treatments. And one of the most popular..is stem cell therapies.  I say the largely unproven practice is as risky as it is costly.  

Canadians from all walks of life are making the medical trek. Some like Ximena Davidson of Bowmanville  have multiple sclerosis.  Davidson was diagnosed with MS in 2013, and became extremely disabled.  She was spending $30,000 a year on medications that she was paying out of pocket after her husband switched jobs and lost his insurance benefits. According to a report in a local paper in Durham Region, Davidson sought stem cell treatments at a clinic in Russia.  

Others have travelled abroad to places like China, Argentina, Brazil and India to treat muscular dystrophy, Parkinson's, spinal cord injuries and strokes.  You may remember that Gordie Howe, the late great hockey player who died recently, suffered a serious stroke in the fall of 2014.  Just before Christmas that year, Howe received stem cell therapy at a clinic in Mexico.  At the time, family members described Howe's response to the treatment as "miraculous."

Some clinical trials of stem cells have had promising results.  Researchers in Ottawa have reported improvement in patients with MS.  The regenerative medicine program at the Ottawa Hospital Research Institute is experimenting with stem cells to repair hearts damaged by a heart attack.  But much of this research is either in the lab or at a very early stage of clinical research.  It's going to take years before stem cells are a viable treatment at a hospital near you.  The trouble is, you hear stories like Gordie Howe's  and others like recently retired Denver Broncos quarterback Peyton Manning and tennis star Rafael Nadal who got stem cells to heal faster from injuries and the public gets the message that stem cells are a viable treatment today.

Personal testimonials aren't the only factor that is pumping the tires of stem cells.  So do stem cell clinics in medical tourist destinations.  But even in countries like Canada and the U.S., where stem cells are seen as experimental only, news releases sent out by universities hype the benefits.  In an article by the CBC's Kelly Crowe, a study published last December in the British Medical Journal noted a nearly nine-fold increase in the use of positive words in scientific abstracts.  And the media picks up on the hype.  A study by Kalina Kamenova and Tim Caulfield at the University of Alberta found that major daily news papers in Canada, the U.S. and the U.K. gave overly-optimistic projections of how soon stem cells would be available.  Don't pin all the responsibility on journalists and the media relations people who write the news releases; both quote scientists who can't resist giving sexy quotes.

Okay, if there are few other treatment options left for a patient. What's the harm in promoting the benefits of this kind of treatment?  Several come to mind.  Those who promote the benefits are selling false hope at a huge cost.  Ximena Davidson, the woman with MS I told you about before, was quoted a cost of $40,000 for stem cell therapy.  Others have reportedly paid as much as $300,000 or more for an entire course of treatment.  

Money is not the only downside.  The use of stem cells is largely unregulated in North America.  That means you're at the mercy of people who make exaggerated claims, with no one to complain to.  And, there are risks.  In a case published last week in the New England Journal of Medicine a man with a stroke got stem cells at clinics in Mexico, Russia, China and Argentina.  At first, his symptoms improved somewhat.  But then he developed back pain, and was diagnosed with a huge cancer in the man's lower spinal column.  Despite surgery, chemo and radiation, the tumor is still growing. He told his story to the New York Times so others might think twice.  

Last December, the U.S. Food and Drug Administration issued draft guidelines on stem cells, and will hold public hearings this September.  The U.S. regulator also sent a warning letter to clinics in California, Florida and New York that they need FDA approval to sell, use and administer stem cells.  Last month, the International Society for Stem Cell Research issued new guidelines advising scientists to dial down the hype.  

Will these efforts work?  Earlier this month, the Lancet published a small study in which stem cells apparently stopped or reversed the progression of MS in 17 of 24 patients.  Vox.com used words like game-changer and cure to describe the results. Clearly, we have some ways to go to give this research a dose of reality.

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