Strip mall stem cells

Michael Joyce is a multimedia producer with HealthNewsReview.org and tweets as @mlmjoyce.

If you had been in Salt Lake City last month, savoring your morning coffee, and watching this channel 4 morning show, you might have been treated to this video promising a “revolutionary” treatment that assures “you don’t have to live with back pain.”

You’d also be assured that the doctor being interviewed, Dr. Kahn, works at the only place in Utah that does this particular type of stem cell procedure.

But had you found this story online — as Dr. Leigh Turner did, and tweeted it our way — you might have noticed, tucked way down at the bottom of the page, this lonely line: “This story includes sponsored content” (the video didn’t mention this at any point during its 5-minute run time, though it’s possible the broadcast version was preceded by a disclaimer).

Dr. Turner is a bioethicist at the University of Minnesota who, along with studying direct-to-consumer marketing and medical tourism, has a special interest in “unproven stem cell therapies.” Last summer he co-authored a paper which documented 351 companies across the United States marketing unapproved & unlicensed stem cell procedures. Dr. Khan’s Wasatch Pain Solutions is one of these businesses. A quick glance at the company’s website offers this:

  • Dr. Kahn is the sole provider listed under “Providers & Staff”
  • The clinic – located in a strip mall between a Subway sandwich shop and an art framing store — can treat nearly two dozen ailments in 7 parts of your body using botox injections, platelet-rich plasma infusions, and the Regenexx … whoops! I mean Regenexx® … stem cell procedure mentioned in the video
  • There is a Regenexx page on the site listing patient outcome data (“made possible thanks to the massive numbers that are compiled throughout the years”) but with a caution that these data are “not part of a controlled trial” .. and furthermore … “none of this data may be reproduced in any way or displayed elsewhere without prior written permission from Regenerative Sciences” (the patent holders for Regenexx)
  • Finally, if credentials matter to you, the website claims that “Given Dr. Khan’s highly specialized training, he is regarded as the top pain & spine specialist in the state of Utah.”  … and … because of his training at three highly reputable training programs across the country “this makes Dr. Khan one of the most well-rounded and best trained physicians in the field of interventional spine & pain management in the country.”

If that is the case then why is Dr. Kahn using an unlicensed, non-FDA-approved treatment that is not supported by controlled research?

“The market for these unregulated, unapproved, and unproven stem cell therapies is expanding,” says Dr. Leigh Turner. “And the list of conditions they claim to treat has expanded to 30 or 40 different diseases.” In reflecting on the promotional content of the video, Turner also noticed something else disturbing:

“What strikes me in watching the video is just how commonplace a video like this has become. These businesses and their claims are everywhere, and people don’t even seem to blink anymore. It’s just become part of the consumer landscape.”

And what about the media landscape?  A quick glance at the KUCW/KTVX- Channel 4 website reveals four sponsored videos in just the past four months from Dr. Khan’s Wasatch Pain Solutions — ALL promoting the use of the Regenexx stem cell procedures. I ask Turner what he thinks of the media coverage of stem cell interventions in general.

“The media coverage of these unproven stem cell treatments has been highly variable,” says Turner. “I’ve seen insightful and critical examples of investigative reporting that deserve credit. But then there are videos like this one that can lead to misinformation. It’s not asking the questions that need to be asked. You can’t just sit back and allow someone to make these claims and assertions and not ask the questions that might help your viewers.”

And Turner is right. There is some great writing out there. Like this piece by Julia Belluz of Vox warning of the consequences of hyping unproven stem cell research. And another compelling read published today by BuzzFeed which takes on the issue of harm head-on. News stories that don’t do such a great job tend toward the anecdotal and feature some of the more wildly speculative uses of stem cells in treating things like Alzheimer’s disease, multiple sclerosis, or even the damaged throwing arms of major league pitchers. But even some of these articles do well in bringing up important issues like outrageous treatment costs, lack of FDA approval, possible placebo effects, pervasive skepticism within the medical community at large, and the availability of well-established alternative therapies. But many reporters could do a much better job in simply asking for data. Asking about conflicts of interest. Asking about risks. And simply following the money. We offer a primer to help journalists address many of these issues.

But beyond the strip mall stem cell injections for whatever ails you, and journalists asking tough questions or not asking any, is perhaps something even more disconcerting. Again, Dr. Leigh Turner:

“If this was just about a few businesses here and there I could see them flying under the radar. But when you have 351 of them — as our study shows — then it suggests a much bigger problem that raises bigger questions. Where is the FDA? Where is the FTC? What about assuring truthfulness, accuracy and honesty in advertising to consumers? And where are the state medical boards? When you have doctors making promotional claims not backed up by evidence, and who are performing procedures that are not part of the contemporary, evidence-based practice of medicine, then we clearly need external regulators involved who are making decisions based on evidence and not based on financial gain. Where are they?”

Let’s be fair here. Whether the setting is strip malls or ivory towers is not the issue; the issue is evidence. I think the strip mall settings of many of these businesses speak more to the burgeoning commodification of stem cell therapies than anything else. But the evidence that these stem cells — as many practitioners claim — are somehow intrinsically capable of sensing the environment they are injected into, and precisely target whatever functions require repair, is not proven. Complex cellular systems don’t operate that way, as correctly pointed out by FDA scientists in this opinion piece published in today’s New England Journal of Medicine.

It is possible some of these stem cell therapies may eventually prove to be safe. Or even efficacious. But until that is clarified with high quality research, the “5 W’s & 1H” of journalism should be applied to every single story about these unproven stem cell therapies: WHERE is the data? WHAT are the real risks and benefits of this therapy? WHY aren’t alternative therapies being discussed? WHO is making the money here and are there conflicts of interest at play? WHEN will see scientific studies backing “revolutionary” claims and why don’t you have them now?

And we end with HOW? How can our state and federal regulators ignore this? How can journalists not give into the hyperbole for clicks and ratings, and instead choose hard questions seeking real information? And how can we as consumers stop falling for this misleading infotainment and go about demanding more integrity from our health care providers and regulators?

I don’t think the answers will come from your local strip mall.

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Alan Cassels

March 16, 2017 at 8:36 pm

Great job Michael. I did a lot of research last year for a friend of mine who is going blind due to glaucoma, which is one condition where the highly marketed uses of stem cell therapies allegedly apply. After looking closely at the literature and conducting interviews with researchers, including those who were offering strip mall-type services, I determined that the science isn’t there yet. It was difficult to explain to my friend that the stem cell entrepreneurs are a long way from having any scientifically valid therapies to offer. What is troubling, is that people like my friend Greg was slowly losing his sight and he was very interested in doing what he could, including travelling to a clinic in Florida to undergo a stem cell therapy, even if it was a “Hail Mary” pass. As it turned out, some of these therapies may prove to be effective and safe, and I hope they are. But until there is proof of safety and efficacy, it is unethical to be promoting these therapies to desperate people.

Mary Mastenbrook

March 17, 2017 at 7:08 am

And there is the chance of being left legally blind:
http://www.reuters.com/article/us-stemcell-consumers-ophthalmology-idUSKBN16M3D6