There was quite a bit of talk about stem cell tourism last week at the World Stem Cell Summit in Madison, Wisc.
For good reason: It’s a fascinating confluence of homegrown medical distrust, internationalism and online culture, with a dash of adventure and blind faith. These medical pilgrims are enchanted by hopes driven by years of media expectation. Many believe that the promise of stem cells has been thwarted not by science, but by politics. It’s the wild west of medicine and there’s no end in sight.
Nobody really knows how big this overseas cure thing is but clearly there are lots of people with disease or disability in a state of suspended judgment. They are going to the other side of the world, spending great sums of money for untested cell treatments they read about on websites set up by the clinics. Nobody knows what’s really going on, where the cells come from, what they do once transplanted. What’s more, in case things don’t work out, there is no legal recourse.
No attempt is made to document results or to track patients over time. It’s here’s-your-dose and adios. Internet testimonials then substitute for scientific publication.
I’ve been following renegade therapies for many years; back in the mid-1980s a handful of Americans went to Russia for some kind of enzyme treatment to make their spinal cords recover. Didn’t work. Remember the fetal shark tissue clinic in Tijuana? I went there and met the doctors, and patients. Nobody got any kind of meaningful recovery that you could remotely say was a result of fish cells. Pretty good scam, especially for being in the pre-Internet era. Anybody remember Neuralyn, the magic juice from Utah that cured paralysis? That one wound up in criminal court and we’re all left to wonder just how easy it is to prey upon the motivated.
Nowadays it’s routine to hear about people going to China or India, or Thailand or Russia for stem cells. It’s interesting that even the stories that take a line against this practice always, in every case, include a testimonial that appears to cancel out all caution. The set up: Desperate parents take out second mortgage to bring child to India for last hope therapy, gets dosed with stem cells, kid gets better, but of course you must remember the whole thing is disreputable and risky and well, you know, maybe the kid would have gotten better anyway, ahem, placebo effect, greedy scam artists, etc etc. The part you remember: The parents say they’d do it again in a heartbeat, and so should you.
There has yet to be a report that singles out people who didn’t get better, or who got worse. And nobody really says it, but stem cell tourism may be a disaster or two away from implosion. If people came back from stem cell Shangri la with cancers or pain syndromes or maybe even dead, you would want to know about it. Not sure you will. But one bad story about stem cells could muck up legitimate research efforts; that’s the fear and the clarion call to action.
Back at the Summit: Reeve Foundation Board Chair Peter Kiernan in his day-one keynote address urged the stakeholders in mainstream stem cell science to consider policing the frontier. As he put it, people are getting some kind of cells “squirted into them” with the only regenerative effect being on the bank account of the snake oil salesman doing the squirting. “I promise you,” says Kiernan, “that if we do not police ourselves, we as a group will be policed.” There remains the sticky issue, he admits, of “who gets to be king.” And what the punishment is.
A panel specifically addressed stem cell tourism on day two. Wise Young, the scientist/physician who runs the online
CareCure Community made a couple of very good points. First, he says, let’s admit that the cure seekers are going to go over pretty much no matter what anyone says to them. He’s advised many not to go, he says, but they go. And they will keep going over
until there are treatments in their homeland.
Second, says Young, let’s don’t call these medical travelers desperados, that sets them on edge. Nobody wants their motives to be desperate. Let’s instead call them “determined.”
Young’s plea is to educate the patient community to understand the risks and to protect them as much as possible from harm. Kudos to Wise for running the CareCure boards – the single best place anywhere to get information about overseas clinics.
The panel went along as you might expect, caution mixed with reports of modest functional improvement. Graham Creasey, a physician who now heads the SCI unit at the Palo Alto VA, presented some light data on
Amanda Boxtel, a Colorado-based paraplegic who wasn’t there in Madison (she told me she’d been invited to the Summit but didn’t want to be the center of controversy, since she has gotten way better after stem cell treatments in India). Creasey said the most important gain for Amanda was probably her sense of hope. Well, who can put a price on hope? It may well be worth four trips to Delhi and $80,000.
The panel was just about to end when a man stood and said stem cells had given his young son his life back. Doctors told him there was no hope. He took the boy to the Dominican Republic for treatment and he got better. “You’re the doctors and scientists,” he said, “but I’m just a dad.”
What part of the session will be remembered? Probably not the part about being cautious.
Click
here for a link to a local newspaper report on the session.
Mad
