The International Society for Stem Cell Research (ISSCR) is a professional organization of stem cell researchers. I am happy to see that they see it as their responsibility to respond to the growth of dubious stem cell clinics offering unproven treatments to desperate patients.
In a recently published handbook for patients, they write:
The International Society for Stem Cell Research (ISSCR) is very concerned that stem cell therapies are being sold around the world before they have been proven safe and effective.
Stem cell therapies are nearly all new and experimental. In these early stages, they may not work, and there may be downsides. Make sure you understand what to look out for before considering a stem cell therapy.
Remember, most medical discoveries are based on years of research performed at universities and companies. There is a long process that shows first in laboratory studies and then in clinical research that something is safe and will work. Like a new drug, stem cell therapies must be assessed and meet certain standards before receiving approval from national regulatory bodies to be used to treat people.
This is good advice for any new treatment.
The problem with dubious stem cell clinics has been growing in recent years. In China, Mexico, India and elsewhere clinics promise “cutting edge” stem cell transplants for a long list of fatal or incurable diseases, like ALS, spinal cord injury, or stroke. They seem to be deliberately targeting affluent Westerners – although many of their victims have to raise money or mortgage their house to pay for the travel and cost of the treatment. The cost is often in the 10s of thousands of dollars, at time more than 100k dollars.
Such clinics typically advertise for customers over the internet. A survey of such sites indicates that most present their stem cell treatments not as experimental, but as “routine.” They offer testimonials to support their treatments, rather than published research.
These clinics are not doing proper science – publishing rigorous research and treating patients only with proper experimental protocols and informed consent. They are exploiting the public’s interest in a potential future therapy to prey on the desperate.
Such clinics are allowed to practice because of lax regulations in the countries in which they reside. Because of some bad press, Costa Rica, India and other countries are starting to take a look at such clinics – but official efforts to regulate them has been half-hearted at best.
It is therefore most welcome that professional and research organizations are seeing it as part of their mission to educate the public and directly address the misleading claims of snake oil peddlers. We need much more of this. Engaging with the public about misinformation and especially dubious health claims and products should be considered a core mission of medical professional societies.