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Stem cell clinics ripping off patients, bullying scientists

No one likes a bully. Intimidation is a rotten way to get what you want. Yet that's what some in the stem cell therapy industry are trying to do to a group of scientists trying to speak up about the often fraudulent nature of their business, writes bioethicist Art Caplan.
/ Source: contributor

No one likes a bully. Intimidation is a rotten way to get what you want. Yet, incredibly, that is exactly what some in the stem cell therapy industry are trying to do to a group of scientists trying to speak up about the often fraudulent nature of their business.

There has been a lot of publicity about stem cells in biomedical research over the past few years. Only a few days ago a 36-year old patient with end-stage esophageal cancer was given an artificial windpipe made from a synthetic scaffold that had been seeded with his own stem cells.

Yankee pitcher Bartolo Colon, who suffered from a series of arm and shoulder injuries that sidelined him for more than a year, found his way to a little-known clinic in the Dominican Republic to pursue an emerging treatment. He had stem cells, made from his fat and bone marrow, shot into his arm. This highly experimental procedure has been shown to work so far in race horses. Colon has been back pitching and doing well.

Yet despite the promising trachea transplant and the more fringe adventures of the Yankee star, stem cell transplants of any sort -- outside of bone marrow transplants and a few other rarely used treatments -- are not anywhere close to being ready for therapeutic use. You would never know this if you looked at the nonsense that is all over the Internet about the power of stem cell "cures" or the claims that stem cells can make your skin or body young again. Some clinics boast they can inject a patient's stem cells back into his or her body to treat spinal-cord injuries or conditions such as Parkinson's disease.

These charlatan claims have sparked worries among stem cell researchers that the credibility of the entire field could be damaged.

Worse, one of the few reputable Internet sites that could set you straight about the knowns and unknowns and lack of oversight by anyone of this rapidly growing marginal world of medicine is no longer there. Lawyers representing some of the industry clinics -- most of which are operated in countries with weak medical oversight -- began threatening the scientists at the International Society for Stem Cell Research (ISSCR), a nonprofit organization, with expensive lawsuits.

Think I am being too tough on the marketing hype about stem cells? A cursory search of stem cell therapies produced these unfounded claims from so-called clinics around the world:

“In close collaboration with universities and physicians world-wide, our comprehensive stem cell treatment protocols employ well-targeted combinations of … stem cells … to treat: multiple sclerosis, spinal cord injury, osteoarthritis, rheumatoid arthritis, heart disease, autoimmune diseases, cerebral palsy and autism. To-date, we’ve treated over 800 patients.”

Treated? Maybe. Charged a hefty fee? I bet. How about the number actually proven cured? That's not so readily available.

As another example of the claims: "Stem cell therapy has proven to be effective for organs and tissues restoration, and for fight against the incurable and obstinate diseases. We treat patients with various diseases, such as diabetes mellitus, multiple sclerosis, Parkinson’s disease, Duchenne muscular dystrophy, cancer, blood diseases and many others, including rare genetic and hereditary diseases. Among our patients there are also people willing to undergo anti-aging treatment."

There is no scientific evidence that stem cell therapy will make a 60-year-old look or feel 30 again.

As Heidi Ledford reported in the June 28 issue of Nature, the ISSCR, which facilitates the exchange of research between over, 3,500 scientists worldwide, has suspended its internet website intended to help patients wade through the more crackpot claims about stem cell therapies and clinics.

All the ISSCR was going to do was to post information on what published evidence existed about claims of cures, which providers had medical-ethics oversight committees and which complied with regulatory agencies such as Food and Drug Administration (FDA) or the European Medicines Agency (EMA). Instead, some in the industry launched a barrage of legal threats at the ISSCR which, as a small scientific organization, felt it could not afford to fight even if, in the end, they would win.

So, the stem cell ‘therapy’ industry -- many of whom seem more concerned with their pocketbooks than with giving patients information -- and some of whom are involved in medicine that is more voodoo than science have bullied their critics into submission. If you are sick or know someone with an incurable disease, keep this in mind when considering the real value of a trip overseas to find a miracle stem cell cure.

Arthur Caplan, Ph.D., is director of the Center for Bioethics at the University of Pennsylvania.