There's a dark side to stem cells: bogus treatments that prey on patients' hopes when mainstream medicine has little to offer.
Stephen Byer stepped far outside typical medical care when his son, Ben, had ALS. He took Ben to China for stem cell-like treatments, and later helped hundreds of people do the same, believing it would help them.
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The unproven procedure could have killed Ben. It didn't -- but it also didn't work. Ben later died of ALS. So did the ALS patients Byer now regrets helping get the treatment.
Why take the chance? For Byer, it started with misleading promises online.
"The Internet, while increasing communication, has spawned a horde of charlatans and creeps," Byer says. "We were suckered into one of the earlier forms of stem cell chicanery."
But not everyone who seeks unapproved stem cell treatments feels ripped off. Even though the stem cell treatments Dawn Gusty got in Tijuana, Mexico, didn't ease her multiple sclerosis, she doesn't look back with regret.
That moment -- when hope surpasses science, and when someone claims to be able to bridge that gap -- may be one of the riskiest for patients to handle. And it's one of the most alarming for stem cell experts.
Hope's Dark Side
"It is a very dangerous situation," says Joshua Hare, MD, director of the Interdisciplinary Stem Cell Institute at the University of Miami.
Make no mistake: Hare is all for scientific stem cell research. His concern, he says, is "hype" that glosses over an inconvenient fact: There are no new approved stem cell therapies.
The danger becomes clear if you Google "stem cell treatment." You'll get search results from clinics in the U.S. and around the world touting stem cell treatments for conditions ranging from baldness to ALS (Lou Gehrig's disease).
People who pursue those treatments "are spending huge sums of money to get therapies that are completely unproven and unlikely to work," Hare says.
Aaron D. Levine, PhD, a Georgia Institute of Technology bioethics professor, agrees. "A lot of companies are claiming they can do things right now the science can't support," Levine says.
But it's happening anyway. Famous athletes and politicians have sought the treatments. So why shouldn't we?
No Results, No Regrets
Twice, Dawn Gusty paid $27,000 for stem cell treatments at a clinic in Tijuana, Mexico. Twice, her care there was completely out of step with accepted medical care for her multiple sclerosis.
Twice, the procedure didn't work. Still, Gusty, of Kingston Springs, Tenn., isn't second-guessing herself. She had gone looking for something better than what her U.S. doctors could offer.
"I was being treated by the book, but I am not a textbook case of MS," Gusty tells WebMD. "It was doing no good."