Stem cells, Darth Vader and the high cost of hope and hype

Darth Vader: Photo by Stefano Buttafoco

Darth Vader: Photo by Stefano Buttafoco

It’s not very often that you get stories about stem cells that mention Darth Vader, Obi Wan Kenobi, the Pittsburgh Steelers and a Beverly Hills plastic surgeon, but those references all popped up in a recent flurry of articles that are shining – yet again – the light on many of the unproven, unregulated uses of stem cells to treat everything from arthritis to Parkinson’s disease.

Let’s start with an article by Associated Press (AP) writer Will Graves who digs into the use of stem cells in sports.  Graves does a good job of highlighting all the reasons why an athlete would try a stem cell therapy quoting Dr. Jim Bradley, a team physician with the Steelers:

“They want the cutting edge, anything that is cutting edge that can get their guys a couple more years in the league. If I was an agent, I’d want the same thing.”

But Graves also does a fine job of pointing out that these therapies are unproven, and that in many cases athletes go overseas to get them because those clinics do not have to meet the same strict regulations as clinics here in the US.

“Traveling to a place like the Caymans, that’s like saying ‘I’m going to Mexico to have an appendectomy to save $80,'” said Dr. Matthew Matava, head physician for the St. Louis Rams and the NHL’s St. Louis Blues. “It looks like it’s not very smart or you’re grasping at straws.”

He also quotes Dr. Freddie Fu, head physician for the University of Pittsburgh athletics program, saying there is far too much uncertainty to take risks. Fu says in many cases the people delivering the therapies don’t even know where these stem cells might go, or what they might do:

“You can have one cell be Obi Wan Kenobi, the other is Darth Vader. You’re not sure which way it’s going to go.”

Matthew Perrone starts his piece in the Huffington Post, with a paragraph that is both gripping and disgusting:

“The liquid is dark red, a mixture of fat and blood, and Dr. Mark Berman pumps it out of the patient’s backside. He treats it with a chemical, runs it through a processor — and injects it into the woman’s aching knees and elbows.”

Berman, the co-founder of the largest chain of stem cell clinics in the US, admits he doesn’t know what’s in the mixture he is injecting into patients. But he says it can help treat more than 30 different diseases and conditions from Lou Gehrig’s disease to lupus and even erectile dysfunction.

Perrone’s piece is a long, detailed and thoughtful look at the finances that drive this business and how many stem cell clinics charge as much as $9,000 for unproven therapies. He quotes UC Davis stem cell researcher – and CIRM grantee – Dr. Paul Knoepfler:

“It’s sort of this 21st century cutting-edge technology. But the way it’s being implemented at these clinics and how it’s regulated is more like the 19th century. It’s a Wild West.”

But the price tag at those US-based clinics is tiny compared to how much some people are paying at overseas facilities. Los Angeles Times reporter Alan Zarembo focuses on the case of William Rader and his company Stem Cell of America.

Rader, a psychiatrist, had his medical license revoked by the Medical Board of California citing negligence, false or misleading advertising and professional misconduct. The Board said: “His dishonesty permeates every aspect of his business and practices.”

Yet Rader continues to charge up to $30,000 for stem cell procedures at the clinic he runs in Mexico. He uses the same procedure for different conditions, offers no scientific evidence it works but claims he’s helped many people and even cured a patient of HIV/AIDS.

For patients battling life-threatening diseases and disorders it is easy to see why they would be willing to take a chance on a therapy, any therapy, that might save their life.

And that’s where the danger in all this lies. What might be seen by an athlete as something worth trying to see if it might help extend their career a year or two, for people at the other end of life this may be their last chance, and that vulnerability means they’ll pay whatever they have to, for something that may be of no benefit whatsoever.

Telling an athlete this might help them play longer is one thing. Playing on a patient’s life or death fears is entirely another.

For more information on how you can make an informed decision about whether a stem cell therapy is right for you, particularly one offered overseas, go to our page on stem cell tourism.

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