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Stem cells + 10: Lessons limits and laments

Medical travel: On the road for a stem-cell cure – or a rip-off?

Faced with a hopeless diagnosis, many patients prowl the Internet for information on alternative therapies, then journey overseas to get a treatment that is not available or legal at home. Such travel, often mislabeled “medical tourism,” has been going on at least since shark cartilage "cured" cancer, but stem cells have been a particular focus of recent travel.

About 750,000 Americans went overseas last year for treatment, according to Robin Smith, CEO of Neostem, a firm that banks adult stem cells for customers. One motivation is cost, but perhaps more important is the hope of getting a treatment that is illegal in the United States.

Black man left, Latina woman right, in wheelchairs smiling.
Photo by Patrick Burly, for the World Stem Cell Summit.
ProfessirX, AKA Richard Gaskin, was paralyzed after a shooting in 1987. Gaskin, who hosted music at the 2008 World Stem Cell Summit, said. “I am honored to participate in the World Stem Cell Summit. People need to know that stem cells offer hope to millions of patients, just like me." On right is stem-cell advocate Sabrina Cohen.

At a session on medical travel at the World Stem Cell Summit in Madison, Wis., Smith predicted that 10 million Americans may travel overseas for medical treatment within five years, and many are already paying a hefty price: "The cost of stem cells for ALS [Lou Gehrig's disease], spinal cord injury or stroke can be $45,000."

These treatments are not necessarily scams, said Doug Sipp of the Riken Center for Developmental Biology (Kobe, Japan), chair of the International Society for Stem Cell Research. "When I started looking at this, I thought it would be a black-and-white issue … but there are also various shades of gray." Some clinics seem to get good results, at least for the short term, he adds, "but it's difficult to know about the claims, they are not backed up by well controlled trials, and a question mark hangs over the field."

Medical travel is often seen as an act of desperation, but that misses the point, added Wise Young, a specialist in spinal-cord injuries who is founding director of the W.M. Keck Center for Collaborative Neuroscience and a professor at Rutgers, the State University of New Jersey. "They are not so much desperate as determined. The typical case is a young man, 10 to 15 years after injury, who says, 'I've just had enough.' They do not ask me if they should go overseas for therapy; they just ask what is the best therapy."

But in many cases, Young said, "You don’t know what you are getting, and if something goes wrong, there is very little recourse."

Hong Kong sunlit skyscrapers from top floor viewpoint
Photo: Buy USA
Hong Kong is one destination for Americans looking for low-cost or unapproved medical treatments.

The black hole

In these circumstances, Young has concluded that the best course is to "maximize the benefit while minimizing the harm." Young is, for example, collaborating on a clinical trial of umbilical-cord stem cells and lithium to stimulate healing after spinal-cord injury in Hong Kong, China and Taiwan.

Young says more treatment experiments should occur in the United States, where scientific and ethical reviews are likely to be better. The lithium and stem cell trial "is not controversial," he says. "It's only a matter of money. It could be done here."

Because medical travel will continue, Young says, "We need to monitor treatments before and after, so we get some information. Negative results are very powerful; they can tell us a treatment does not work, we don’t need randomization to find this out."

The inquisitional imperative

Medical travelers need to ask questions in advance, said Graham Creasey, a professor of neurosurgery at Stanford University Medical Center:

What is the pre-clinical evidence in animals?

What is the study design, and has the study been reviewed?

What are the benefits?

What outcome measures have been used?

How long was the follow-up?

One question answers itself, Creasy said: Avoid any treatment if it's described as 100 percent safe.

Sorting it out

Retired art dealer Stephen Byer gained personal experience with offshore treatment when his son, Ben, an ALS patient, got a cell transplant at a Beijing clinic in 2004. The transplant used glial cells, which support neurons but don’t carry the electrical signals, with the intention of promoting survival by improving the neuronal environment.

Tree-like cell with starfish-like cells gripping its trunk
Image: NIH
Glial cells, including astrocytes and oligodendrocytes, are a focus of research in regenerative medicine because they help neurons stay healthy. If neurons are dying, restoring glial cells could be the key to survival.

For a time, Ben did regain some speech and movement. “It was a wonderful three to six weeks," says his father. "But fetal cells are by definition baby cells, and not enough was done to make sure they could thrive in the presence of adult cells, so the benefit went away. I wish I could say our trip was fruitful.”

Ben died at age 37 in July, 2008, and even though the Beijing clinic has a steady stream of patients, Byer says its treatment has changed little, "so it gets pretty much the same result.”

In September, 2008, Byer assembled data on international ALS clinics (96k pdf file), which he divided into two groups: Caveat Emptor (let the buyer beware), and Caveat Fugio (Let the buyer run away). “There are some fine scientists steadfastly searching for solutions," Byers says, "and others who are motivated by greed, who have no scientific justification for their claims.”

So can stem cells fight Lou Gehrig’s disease?

Megan Anderson, project assistant; Terry Devitt, editor; S.V. Medaris, designer/illustrator; David Tenenbaum, feature writer; Amy Toburen, content development executive

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