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The latest news and information about what's going on with SCI science and research. Brought to you by Sam Maddox, author of the Christopher & Dana Reeve Foundation Paralysis Resource Guide.

Stem Cell Tourism Workshop Nov. 18

The point of this blog is to announce a workshop dealing with rogue stem cell therapies that will be broadcast online November 18. Details below. First, a few thoughts.

Stem cell tourism continues to thrive. I often wonder why. Seems obvious enough that stem cells are not quite up to the great promise we all have for them. It’s also clear that stem cell charlatans have done the world of medicine a great disservice. I’m sympathetic to people with chronic health conditions who genuinely believe they have no alternative in traditional medicine and therefore are attracted to unregulated overseas clinics. These patients or their guardians have a faith in science, or what is purported to be science, that is quite remarkable.

The stem cell research community has witnessed this overseas treatment phenomenon for more than a decade. There have been efforts to slow it down with education. If a mom and dad actually asked an overseas clinic the questions suggested by mainstream medicine (see International Society for Stem Cell Research ISSCR) there is no way they would take their child with cerebral palsy to Mumbai for stem cells.  Check out A Closer Look at Stem Cells, from ISSRR. Here are a just a few good questions to ask:
• What is the scientific evidence that this new procedure could work for my disease or condition? Where is this published?
• Have there been (earlier) clinical trials? What was learned from these trials? Is there independent oversight of the treatment plan, for example, an Institutional Review Board? Can you provide me with several names of scientists and clinicians who can give me independent advice?
• Is there any independent oversight or accreditation of the clinic where the treatment will be done and the facility where the cells are processed?
• Is there approval from national or regional regulatory agency, such as the U.S. Food and Drug Administration (FDA) or the European Medicines Agency (EMA), for this treatment of this specific disease?
 
Information isn’t enough. How about a touch of fear – you know, what if you get the cells and you get a tumor or something worse than that, what do you do then? Who pays for complications? But indeed there have been very few cases reported of outright stem cell disasters -- and of course dozens of testimonials about success, as fuzzy as that concept may be.

I came across another tactic that might reduce stem cell tourism: Glenn Cohen, an assistant professor at Harvard Law School, suggested prosecuting parents for child abuse if an unregulated treatment involves minors. “This falls under existing child-abuse and neglect statutes,” Cohen said. Wow, as a journalist I'd love to follow that drama.

So stem cell tourism appears to be more common than ever. The part I don’t fully grasp is how people actually make the choice to travel across the globe with $30 or $50 grand in hand, for unsubstantiated claims that stem cells are tomorrow’s therapy, today? First, there is a prevailing cartoon version of what a stem cell is – the body’s basic building block that homes in on trouble and fixes it. This has become a basic sales pitch from the overseas clinics, and it is apparently accepted at face value.

So why don’t we get the miracle cells here at home then? I think the cautions of the mainstream are being heard, just ignored -- stem cells in India or China or Mexico, are unproven and probably unsafe, but the more powerful counterpoint from the clinics is this, taken from Stem Cell of America, formerly known as Medra (read about the company at ripoffreport.com), now operating in Mexico:
The primary reason Fetal Stem Cells are not in general use is not because of their safety or efficacy but instead because of politics and the fear of loss of income from those supplying traditional medical treatments.
 
That’s it. Conspiracy. They won’t give you stem cells because vested interests won’t allow it. Same as there’s no cure for spinal cord injury because the wheelchair industry will lose money. Go figure.

Anyway, here is the meeting:

The Institute of Medicine will explore the topic of stem cell therapies with an open webcast of a workshop called “Stem Cell Therapies: Opportunities for Assuring the Quality and Safety of Unregulated Clinical Offerings.”

The workshop will take place on November 18, from 8:30am to 5:30pm, in Room 125 at the National Academy of Sciences Building at 2101 Constitution Avenue, NW, Washington, DC.

Be sure and register for the webcast.

From IOM:
The Institute of Medicine and the National Academy of Sciences will co-host a workshop with the International Society for Stem Cell Research that will take a critical look at the practice of unproven stem cell treatments. Speakers will examine the evidence base of unsubstantiated treatment offerings and the associated research and clinical risks and concerns. Discussions will delve into legal hurdles for establishing standards and criteria to govern stem cell trials and treatments and explore a range of potential solutions for assuring the quality of unregulated therapies.

The Institute of Medicine is an independent, nonprofit organization that provides authoritative advice to policy makers and the public.
Posted by Sam Maddox on Nov 8, 2013 3:09 PM US/Eastern

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