RENEE MONTAGNE, host:
This is MORNING EDITION from NPR News. I'm Renee Montagne.
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And I'm Steve Inskeep. Good morning.
Here's one more reason that tourists are flocking to China. They're coming for the Great Wall. They're coming for the great cities. They're coming for the Olympics in Beijing. And they're stem cell tourists, patients with incurable conditions who are traveling to China to receive experimental treatments. These are often treatments not available in the United States.
One company is claiming a medical breakthrough, saying its treatments are restoring vision to blind children. And that has led to controversy in the United States and China alike.
NPR's Louisa Lim reports from the eastern city of Hangzhou.
Ms. JENA TEAGUE: Laylah, where's mama?
(Soundbite of laughter)
LOUISA LIM: Jena Teague plays with her seven-month-old baby girl Laylah, staring intently into her eyes. This simple question, where's mama, is a loaded one. Just weeks ago, Laylah was completely blind. She was born with optic nerve hypoplasia, or ONH - a condition where the optic nerves had failed to develop properly. Conventional medicine offers no treatment and no cure.
But Jena came across a Web site about stem cell treatments in China and decided to try it, against advice from specialists back home in Georgia.
Ms. TEAGUE: None of the specialists had ever heard of what they were doing with the stem cells. But they told me not to come over expecting anything to happen out of it.
LIM: Nonetheless, Jena and her husband Terry Williams traveled to the eastern Chinese city of Hangzhou. They're spending $23,000 for Laylah to have infusions of stem cells harvested from umbilical cords - not the more controversial embryonic stem cells. In the U.S., cord blood stem cells are used for treating blood diseases, but are not used for treating other conditions, like Laylah's vision problem.
But Jena says the treatment's already working.
Ms. TEAGUE: When we got over here, we've had, so far, three injections of a stem cell through IV, and now she sees light out of one eye and the other one is actually dilating almost to where she can see light.
LIM: So with such a small baby, how can you tell what she's seeing?
Ms. TEAGUE: I can't tell anything. I'm just say - that's what the doctors are saying.
LIM: So far, 10 patients suffering from ONH have been given the same stem cell treatment in China. The Chinese doctors claim all 10 had better vision after the therapy
(Soundbite of crowd chatter)
LIM: That's video of then five-year-old Rylea Barlett, who received stem cell treatment in China. She, too, had been blind before.
Dr. SHALESH KAUSHAL (Eye specialist, University of Florida): This child had essentially no light perception, and upon returning, she has had a gradual improvement - so much so that at our exam it appeared that she had formed vision. That's to say that she could at least recognize large letters.
LIM: Dr. Shalesh Kaushal is an eye specialist at the University of Florida. He examined Rylea after her return to the U.S. He concluded the stem cell therapy was the only clinical explanation for her improvement. Some infants with ONH gain more vision spontaneously over the first few years of life, but Rylea was already too old for this.
Dr. Kaushal is now evaluating other patients, both before and after treatment at the same Chinese center. But he's not recommending that patients go to China for stem cell therapy. He says much more research needs to be done.
Dr. KAUSHAL: It's clearly a provocative result. If, indeed, this is a real, reproducible observation or effect in other patients, one may consider it as a fundamental breakthrough.
LIM: Tomorrow's treatments today. Those are the first words on the Web site of Beike Biotechnology, the company offering the stem cell treatments. Directly beneath is a toll free number for inquires from prospective patients in the U.S.
Dr. SEAN HU (Chairman, Beike Biotechnology): I think we will have 18 rooms on this floor, about 25 beds.
LIM: That's Dr. Sean Hu, the chairman of Beike Biotechnology. A boyish 40-year-old, he's a medical doctor-turned-entrepreneur with a PhD from Sweden in biochemistry. Seven years ago, he set up a medical equipment company and began funding stem cell research. Less than three years ago, he set up Beike.
Since then, 3,000 patients - most from China - have already received Beike's stem cell treatments for a wide range of conditions. He says 70 percent have seen improvements, but he admits he can't explain why.
Dr. HU: In the clinical area, we know that patients get improvements. We don't know the mechanism behind it.
LIM: That raises a lot of concerns. Any improvement could be due to the placebo effect, or other factors besides the stem cell therapy, and may not lead to longer-term functional gains. No rigorous controlled clinical trials were carried out before the treatment was offered to patients. No research has yet been published in established peer review journals overseas. And no one knows for sure what the possible risks might be.
But Dr. Hu isn't worried by the ethical implications of what he's doing.
Dr. HU: I can say I changed the life of these patients. Now they get their vision back. They went from complete blind, now they can see stuff.
LIM: Then there's the fact that Beike Biotech claims to treat a wide range of conditions with stem cell therapy - from spinal-cord injuries to epilepsy to cerebral palsy to neurodegenerative disorders.
Bruce Dobkin is director of the neurologic rehabilitation and research program at the UCLA. In an email to NPR, he said it is extreme nonsense to think that cells can be incorporated into the complex nervous system and do so much, when we cannot even get cells in mice and rats to do very much.
Beike even uses stem cells to treat autism, a condition for which there's no accepted cause. This has made Chinese scientists worry, too.
Dr. NAIHE JING (Member, Chinese Academy of Sciences): ...working on stem cells.
LIM: Dr. Naihe Jing is the deputy director of one of China's top stem cell research labs and a member of the prestigious Chinese Academy of Sciences. He fears Beike could ruin the reputation of China's entire biotech industry.
Dr. JING: We think money's mainly behind this, so we didn't like one people getting enough money, and it's a bad reputation for the whole country.
LIM: Already, 600 stem cell tourists have paid around $20,000 each for their therapy, while even more Chinese patients are flocking for treatment. The venture capital is flooding in, too.
Beike's chairman, Dr. Hu, says he's raised about $15 million in funding, a claim which couldn't be verified. He admits making a calculated decision to go into stem cell research. As he put it, if you're investing your effort, you have to choose the area with the best return.
Dr. HU: Stem cell research is so obviously very, very important. It's the most important technology in the biotech area in the future, because it's going to create a huge market, I would say even bigger than the whole pharmaceutical industry. Stem cell and regenerative medicine is the future of medicine.
LIM: Doctors may give up, but we can't, one parent told me. His son's stem cell treatment for autism and vision problems had yet to show any results. But, he said, we're still hopeful.
And hope is a word that echoes around the wards, where banners from former patients thank the hospital for giving them hope. The results of this experimental therapy may be uneven, unproven, and in some cases nonexistent. Yet for patients and their families, hope is the one commodity on sale here -even if it costs tens of thousands of dollars.
Louisa Lim, NPR News, Hangzhou, China.
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INSKEEP: And while some parents look to the possibilities of stem cell therapy for childhood blindness, the treatment does have its critics. And you can read an interview with the head of the Vision Center at Children's Hospital in Los Angeles at npr.org.
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