Scientists, clinicians and MDA urge caution over stem cell “therapies”

Neuromuscular clinics and patient organisations including Muscular Dystrophy Australia have noticed a recent rise in interest in stem cell “therapies” being advertised by clinics in developing countries in Eastern Europe, Asia and South America. Numerous reports have surfaced of people traveling to these clinics and spending tens of thousands of dollars on these unproven procedures. This is a major concern because at best money is wasted and, at worst, adults and children are at risk of serious, life threatening side effects.

There has been a lot of media hype surrounding stem cells, but like any potential treatment it must go through the rigorous process of pre-clinical research and several phases of clinical trial to ensure that it is effective and safe.

There have been some promising results in animals using stem cells for neuromuscular disorders, however there have not yet been any successful clinical trials in humans. It will probably be a long time yet until the work on stem cells currently ongoing in the lab can be translated into a treatment in the clinic.

Muscular Dystrophy Australia Executive Director, Boris M. Struk, said “To quote from my July 2013 From the Desk – ‘Our community has matured its understanding of breakthroughs, following repeated articles, comment and advice emanating from MDA advising the need to temper expectation based on the spin which prevails.

We need real doctors and not spin doctors to tell it how it is: in the political arena, the medical and scientific arenas.’

The web has the capacity to place information at your fingertips and with the hope that we all hold for a timely solution, sometimes we can be blinded by overly optimistic ‘spin’ or so-called convincing advertising on unscrupulous websites.

Rest assured, the moment that a viable trial or treatment is identified through our vast international resource network we will inform you about the realistic expectation of any announcement of a treatment or cure. Do not mortgage your house to go to some dubious overseas location for a treatment in seeking hope. I assure you, you will be financially depleted with no medical gain whatsoever.”

A timely reminder of the process: a scientist discovers, peer review and subsequent clinical trials confirm the results and then and only then should that be broadcast in a realistic manner without the spin of breakthrough.

TREAT-NMD – a global neuromuscular network of leading specialists, patient groups and industry representatives – has put together a resource guide to give both patients and researchers guidance on stem cell research, stem cell tourism and cord blood banking:

Further information:

  • “I’ve got nothing to lose by trying it” guide to unproven medical ‘treatments’ produced by Sense about Science

For further information on any of the areas discussed above, please contact MDA on (03) 9320 9555 or email