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This is MORNING EDITION, from NPR News. I'm Don Gonyea.
RENEE MONTAGNE, Host:
And I'm Renee Montagne.
NPR: stem cell therapy. As NPR's Richard Knox reports, that doesn't stop patients from seeking stem cell treatments for a wide variety of conditions.
RICHARD KNOX: Google stem cell treatments, and you'll get a gazillion websites.
GEORGE DALEY: So we've gotten 13,400,000 hits.
KNOX: That's Dr. George Daley of Children's Hospital in Boston, one of the world's foremost stem cell researchers. He pulls up some of the sites. They look pretty convincing.
DALEY: Many of them have the veneer of scientific respectability.
KNOX: Sometimes, stem cell therapies actually work. Some can cure blood diseases such as leukemia. But many of these websites offer treatments given abroad that are not approved in the United States. Daley says they're nothing more than scams. They claim to cure diabetes, Parkinson's, Lou Gehrig's disease.
DALEY: Everything from A to Z. For the vast majority of these conditions, stem cells are not the answer today. We hope they will be in the future, but they aren't today.
KNOX: Daley pulls out a stack of papers six inches thick, hundreds of emails and letters from people seeking stem cell cures.
DALEY: Here's one that says: Dear Dr. Daley, I have a son with optic nerve hypoplasia - this is a child who's blind. I'm considering the umbilical stem cell treatment in China. I'm interested in why you are so skeptical.
KNOX: It's because Daley's seen no evidence stem cells can cure blindness. I decided to check up on children who've been treated for this very problem at a clinic in eastern China. It turns out there's an American specialist who was curious to see if it worked, so he examined a bunch of kids treated there.
SHALESH KAUSHAL: Incredibly sweet families - salt-of-the-earth people.
KNOX: Dr. Shalesh Kaushal at the University of Massachusetts invited eight of these families to come in for free examinations. The results?
KAUSHAL: There didn't seem to be any ostensible benefit from the stem-cell infusion - in all of them, as far as we could tell, in talking to the parents, as well.
KNOX: So nothing on the eye exams, nothing on the brain scans. And then Kaushal took the children to a pancake house for breakfast.
KAUSHAL: And I watched all of the kids, and so did my wife. And they all struggled to find their food. That means you can't take a fork and cut a piece of pancake and get it to your mouth. It was heart-wrenching.
KNOX: Some parents acknowledged the treatments had done no good. Others were sure it had. All of them paid tens of thousands of dollars for it. Kaushal says, understandably, parents really want to believe the treatment worked.
KAUSHAL: For something that was such a stupendous effort to do - you know, to raise all this money, to get over to China and get this treatment - you might imagine that there is certain psychological expectations of the treatment - even more than that, emotional.
KNOX: A lot of people are falling for unproven stem cell treatments. Another leading researcher - Irving Weissman of Stanford - says it hit him when he gave a talk in rural Montana. Afterward, two farmers came up and told him they'd gone out of the country for stem cell treatments costing up to $85,000, with no effect.
IRVING WEISSMAN: It pointed out to me that a sea change had happened with the advent of the Web as a free place to make claims, make advertising, make money.
KNOX: Weissman, then president of the International Society for Stem Cell Research, decided to set up a consumer watchdog program.
WEISSMAN: To help patients and their caregivers look at a site that claims a therapy and find out pretty fast if it's a fraudulent site or if it's a legitimate therapy.
KNOX: Richard Knox, NPR News.
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