So… I’ve been promising to post material from the Feb 12th conference for a while, and here it FINALLY is! I’ve been moving to a new house… and I didn’t have net access for weeks and weeks… and the dog ate my homework… and, okay; enough already. I think I’ve been trying to fit these notes into literary form, because they will become an important aspect of the book. But it’s more important to get them out there for people to read. So… keeping in mind that these are fairly rough… here’s Part One!
The scene opens on February 11, at Tim Caulfield’s introductory talk…
Downtown Sacramento seemed laid out specifically for the purpose of driving visitors insane, but I finally found the right building on the UC-Davis campus. Luckily, my sister dropped me off; I don’t even want to think about what would have happened if I’d needed to find parking. It seemed to be one of those places where you needed to have been born in a parking space in order to find one.
The talk was called “Science Hype and the Marketing of Unproven Stem Cell Therapies.” It sounded spicy, full of insider scandals and shocking case histories, the kind of thing that was a guilty pleasure to hear.
Timothy Caulfield walked up to the podium. He was all chiseled cheekbones and dimpled chin and square jaw, like a Hollywood version of a science geek, the kind of actor who pops up in a dumb scifi thriller to appear onscreen and spout scientific rationale for something James Bond is doing, all while looking ridiculously hot. In addition, he actually ended sentences with “eh” in the cutest Canadian accent imaginable. But his geek credentials were bona fide.
He was the Canada Research Chair in Health Law and Policy, I read. I wondered if that meant he was able to sit in Parliament. Or Congress? Or whatever it was that they had. I read on. Trudeau Fellow and Professor, Faculty Of Law and School of Public Health. I wondered if that had anything to do with Gary Trudeau. Oh, wait, Pierre Trudeau had been the Prime Minister at some point. (Were they related?) Let’s see, what else… Research Director, Health Law Institute, University of Alberta. I was officially impressed.
He took a place at the podium.
“I believe in stem cell research,” he said. “But stem cell tourism and illegal clinics hurt legitimate science.”
Well, no argument from me there.
He began to click through Powerpoint slides of smiling models used to sell stem cell treatments for every imaginable ill known to man, all the way from wrinkles to metastasized cancer. It was easy to see his point—there was a tremendous amount of hype surrounding unproven treatments, all of which just happened to be very expensive for the patient.
“This kind of thing has happened before,” he said. “Magnet cures. Radioactive water. Radium used to be sold as a cure for cancer, if you can believe that. There are a lot of historical precedents. We’re seeing this today with gene therapy too, to a degree. But here’s the difference.” He paused to emphasize his point. “The biggest difference is that in the last few years, efficacy is assumed. Stem cells treatments are being presented as both effective and available today. And that’s a very big difference. That’s why I call this scienceploitation. Now, let’s look at why this has happened.”
He clicked to a slide that showed a smiling picture of a young Gordie Howe. I sat up straight. I was very familiar with this story. I was not the biggest sports fan this world has ever seen, but even I knew who he was.
Gordie Howe, hockey great, felled in his late eighties by a series of strokes. A biotech company named Stemedica contacted his family in November 2014 and offered free experimental treatments through Novastem, a Mexican distributor of their products. That was the point where the story had started to raise red flags for me. Nothing against Mexico, but there are a whole lot of things illegal in the U.S. that suddenly become legal as soon as you slip over the border. Neural stem cells were injected into his spinal canal, and he received mesenchymal stem cells by intravenous infusion. In the words of the company reps, “His response was truly miraculous.” Suddenly walking and talking, helping with household chores, thinking clearly again… It all sounded like an ad for Stemedica, part of a glossy brochure used to lure in new customers. So what could possibly be wrong with this picture?
Possibly plenty.Here’s one of the better articles I’ve found which thoroughly discusses this point. The company really is running a trial forA Study of Allogeneic Mesenchymal Bone Marrow Cells in Subjects With Ischemic Stroke, and it’s currently recruiting participants, but Novastem isn’t mentioned anywhere in it, and that’s the company which actually did the treatments. On December 6th, Howe was taken for the stem cell treatments at Novastem, which really can’t have been anywhere except Tijuana. Call me crazy, but Tijuana? Really? Why?
Most troubling of all, there were a whole lot of different and vastly conflicting stories about just how much improvement he’d had, and when, some of which involved nothing that could be attributed to those stem cell treatments at all. There was every chance that he had normal improvement, and that Stemedica unfairly got the credit. This was especially the case because Howe apparently had major improvements nine days after his stroke but long before Stemedica’s treatments, and then a setback, followed by another improvement, another setback… in other words, the kind of thing that you commonly see after a stroke. I remember that it was exactly what happened to my grandmother, and I can vouch for the fact that she didn’t get any stem cell treatments.
The first time I read about what had happened (or not happened) with Gordie Howe, I wished that I could simply take all of it at face value, but I felt the same as I did that night– that people are justified in withholding too much enthusiasm. There’s too much that we didn’t and don’t know about what really happened. Yes, Stemedica is doing a trial on this exact issue, but then why wasn’t it connected with Novastem in any way when they were the ones who actually performed the treatment? If it had anything to do with this procedure needing to be done outside of the U.S., then why was that the case? Why didn’t we have official statements from any of the medical professionals involved? Why were there so many conflicting stories about when Howe had showed improvement and how much improvement had actually been shown? Why were there different stories even coming out of the Howe family? And frankly, when a company announces that they’re planning to offer the same treatment at a cost of $30,000 from now on, well… that in itself has got to raise a red flag or two.
Tim Caulfield went on.
“Lots of athletes have had stem cell treatments. Gordie Howe was only one of them. Rafel Nadal the tennis player is another. Peyton Manning, too. Dr. Oz recommends stem cell clinics all the time– at least 50% of his advice contradicts with evidence, by the way, if you’ve seen the recent study. Kim Kardashian sends out PR’s about her $500 vegan stem cell facials. Elle magazine actually had a “best stem cell face cream of the year list. Scientific American published an article about untested stem cell cosmetics. There’s a lot of stem cell snake oil, and popular press coverage about stem cell clinics has become ridiculously positive over time.”
“Now, if we look at some specific examples of stem cell clinics operating today…” Tim clicked through even more slides. I looked at the names. Integrated Medical Center in Mexico, EmCell, Saige Health Care. I’d seen these before.
“What are these clinics telling patients? Well, the treatment is portrayed as routine, risk-free, and efficacious. They’re presented to public with testimonial pages, not published research. It’s gotten worse over time—actually much worse since 2008, when this last study on for-profit stem cell clinics was done. It’s a net based industry with profits of at least a billion a year, probably more. There are over 700 clinics around the world; most are in China, Mexico, India, and the Philippines. Less than 2% are in the U.S., but that number is growing very fast. Canada, the US, and the UK are primary sources for patients. Quite a few children are brought by their parents for treatment.”
I couldn’t help thinking of the little boy with Stargardt’s I’d seen twice at Casey Eye Institute. I pictured his haggard mother learning about a clinic promising a stem cell treatment that would keep that child from growing blind. I understood why people went there, all right. I knew all too well what desperation drives us to do.
TO BE CONTINUED…
I survived the disease, and I now have the only remission on record. But a remission is not a cure. The stem cell drug I need for a real cure is now rapidly moving towards approval in the rest of the world, but in the USA, it—and all other cellular therapies-- are still stuck behind prejudice, ignorance, and lack of funding. Hundreds of millions of desperate patients with incurable diseases need these drugs.
That’s why I’ve gone on to fight for greater public education on stem cell drugs, knowing that our laws must be changed so that all of us can get access to the best treatments instead of our health and our lives being held hostage by special interests.
I’m now a patient advocate whose work on stem cells and patients’ rights has been published in outlets such as the Oregonian. I am a manager at popular science and financial blog www.stemcellinvestor.com and a frequent speaker at many venues across the spectrum, including churches, scientific conferences, and atheist groups, and everything in between. I’m also an advocate for Right to Try laws that would allow access to experimental medication for terminal patients at the state level. Read the entire story in my upcoming book, And the Blind Shall See: A Skeptic Patient Surprised by Faith, Science, Family, and Miracle Cures.
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