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Mainstream researchers say medical tourism is unethical, dangerous and possibly fraudulent
By Marie McCullough
Philadelphia Inquirer
Published on Sunday, Jul 20, 2008
PHILADELPHIA: In February, Marcela DeVivo took her baby son to the Dominican Republic and paid $30,000 to have him injected with blood stem cells from aborted fetuses.
Nathan, who turns 2 next month, was born with the hemispheres of his brain fused. He is physically and mentally handicapped.
DeVivo is among a growing number of Americans spending up to $75,000 in the hope that clinics in developing countries have realized the dream of regenerative medicine: using stem cells to fix the so-far unfixable.
From Guatemala to Ukraine, dozens of stem-cell purveyors are selling that dream over the Internet. They say they are helping patients whom mainstream medicine cannot. And they purport to treat a stunning list of illnesses, especially incurable conditions such as Parkinson's, cerebral palsy and paralysis.
Their Web sites, many loaded with patient testimonials, offer little or no scientific evidence to support their claims.
While no one knows exactly how big this new form of ''medical tourism'' has grown, it is booming. One of the biggest stem-cell firms, Beike Biotech — whose slogan promises ''tomorrow's treatments today'' — says it has treated 3,000 Chinese and foreign patients at its 24 hospital clinics in China.
Mainstream researchers condemn stem-cell tourism as unethical and dangerous, if not fraudulent. They urge patients to wait for rigorous studies.
Wise Young, an internationally known spinal-cord-injury researcher at Rutgers University, said: ''Let's say these guys are making $20,000 per patient. They're making hundreds of millions of dollars. They can't take time to document it and publish it? This is the wrong way to do it.''
For many patients, the proper way — years of animal studies followed by arduous human testing — is too slow. They hope the experimental cells hit the right targets, like magic bullets, even if humans are shooting in the dark.
''I went to the Dominican Republic expecting a miracle,'' DeVivo, of Valencia, Calif., wrote on her blog, prayfornathan.org. ''Will he walk out of the clinic? Maybe he will say his first full, clear word. What will it be?''
Patients cite success
Justin Lowery's case shows why mainstream scientists want controlled studies — and why patients won't wait.
Justin, of Carneys Point, N.J., was born blind, the result of severely underdeveloped optic nerves.
In February, when he was 10 months old, the impact of his handicap was obvious as physical therapist Karen Conner worked with him at home. Justin couldn't roll onto his belly, crawl or pull himself to a standing position.
''What are you doing, big boy?'' cooed his mother, Lora, as Conner bounced Justin on a giant ball to strengthen his abdominal muscles.
The baby did not smile or laugh. He didn't reach for toys, even ones with lights and sounds. He was easily startled. He recoiled at most objects put in his hands.
Fast-forward to April, two days after Justin's first birthday — about a month after he and his parents flew home from Beike's clinic in Hangzhou, China.
A reporter watched as Justin's eyes followed a lighted ball that Conner moved in front of his face. He also pulled blinking balls out of a plastic jar, crawled to get toys, knelt, and pulled himself up using the sofa. He often smiled.
Jonathan Salvin, Justin's ophthalmologist at Alfred I. du Pont Hospital for Children in Wilmington, Del., found no change in Justin's optic nerves but called his ability to follow objects with his eyes ''a pretty significant improvement.''
Was it due to the Lowerys' $70,000 odyssey?
All Salvin could say for sure was that occasionally, vision gets better as the brain matures early in life.
''I have seen improvement like this in kids who haven't had this protocol,'' he said.
Other factors at work
While the Lowerys can live with that ambiguity, researchers cannot.
''The unfortunate thing,'' said John Steeves, a spinal-cord-injury researcher at the University of British Columbia, ''is that none of us is learning anything that advances our scientific understanding.''
Many patients or families, including Justin's, report neurological changes within 48 hours of receiving stem cells.
Even stem-cell purveyors acknowledge that nerves cannot grow — much less regrow — that fast.
''We believe these immediate results occur from the neural growth factors used during the transplant process,'' says Beike's literature, suggesting growth chemicals revive existing nerves.
Critics cite other factors:
• Care that includes surgically opening an injured spinal cord may free compressed nerves.
• Believing is seeing, also known as the placebo effect.
• No one wants to feel bilked, especially after fundraisers and loans.
''The problem with folks who say, 'Things are a little better' is that they've just spent a lot of time and money,'' said Bruce Dobkin, a neurologist and rehabilitation expert at the University of California, Los Angeles. ''And they think, 'Maybe I'll continue to get better' ''
And what of Marcela DeVivo, who hoped fetal stem cells would work miracles for her then-18-month-old son?
There were no miracles.
DeVivo said the treatment still had been worth it. ''I see little changes, which in a child like Nathan are important,'' she wrote. ''His head and trunk are stronger. He is more alert. His tongue is moving better.''
She said will continue to seek therapies to help keep him healthy by preventing related problems, such as hip dislocation and spinal curvature. And those therapies include stem cells.
''We're going back in August for more stem cells,'' she said. ''Going back, it's less expensive — $12,000.''
PHILADELPHIA: In February, Marcela DeVivo took her baby son to the Dominican Republic and paid $30,000 to have him injected with blood stem cells from aborted fetuses.
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