1998 cover of Science magazine. Credit: University of Wisconsin
If you are reading all or parts of this blog carnival you are probably a fan of stem cells and regenerative medicine more broadly. You probably believe this field can and will change the way medicine is practiced. But how careful are you when choosing your words to express this fan-boy or fan-girl optimism? The work and words of the true champions in the field are being used by the charlatans selling unproven treatments to a public that too often does not understand the difference.
All of us in the field need to do a better job of policing our words and helping the public understand the difference between proven and unproven therapies. If we don’t, those two thin lines, between hope and hype, and between champions and charlatans, could set the field up for major setbacks in public confidence. That could slow or block commercial rollout of proven therapies.
We already have headlines like this one from earlier this month in MIT Technology Review: “After 25 Years of Hype, Embryonic Stem Cells Are Still Waiting for Their Moment.” The author notes that the language of excitement expressed by researchers in the early days has survived as “fly-by-night medical clinics started cashing in on the hype.” By 2021, a data review by the Pew Trusts found there had been 360 documented cases of adverse events at those clinics between 2004 and 2020. I’ve seen estimates of the number of clinics peddling unproven therapies in North America ranging from 700 to 2,000.
The number of lawsuits against these clinics is rising as is news coverage of the adverse events. But for the most part those clinics, which occasionally get a warning letter from the U.S. Food and Drug Administration, are getting a free pass to do and say what they want. Much of the public fails to see the difference between a “treatment” at one of those clinics and one in a registered clinical trial. If the adverse events register in the consciousness of consumers—I haven’t found any good data—I bet the majority see the bad news as coming from the field as a whole, not bad actors.
This is where the true champions of the field need to step up their game, calling out the questionable “therapies,” and routinely discussing the difference between unproven therapies and procedures taking place in registered clinical trials. This has gotten more complicated since the U.S. National Institutes of Health’s ClinicalTrials.gov listing of clinical trials can now include “trials” in which the patients are paying for the treatments.
A few folks in the field have proven vigilant in this regard. Paul Knoepfler at University of California, Davis, uses his Niche blog to call out questionable clinics. Tim Caufield at the University of Alberta writes articles and books and gives talks about his concerns. At the University of Pennsylvania, Bruce Levine uses his social media accounts to address the problem. Others join in, but there needs to be more people and more vigour in the efforts.
Dr. Knoepfler recently wrote about the very minimal data on BrainStorm Cell Therapeutics trials using its NurOwn product to treat ALS. He noted that even the ALS Association that funded part of the work complained about a lack of transparency saying: “The amazing testimonials we have seen online do not align with the data that BrainStorm has shared with us or has [sic] been published in peer-reviewed publications.”
Toward the end of that same blog Paul notes: “I’ve been writing about this long enough to remember the Neuralstem cell therapy work for ALS, which got hyped and gave people false hope. That kind of thing needs to be avoided.”
A loud reminder that people in the field releasing data need to choose their words carefully – a message that bounced around the globe in June. The work involved growing stem cells into structures that somewhat resemble embryos. But calling them “synthetic embryos,” as the team did, resulted in immediate pushback. Former Trump adviser Steve Bannon called them “the next abomination.” And many in the field pointed out they weren’t really embryos at all. The International Society for Stem Cell Research (ISSCR) felt compelled to issue a formal statement that included: “Integrated embryo models are neither synthetic nor embryos.”
If you feel like you want to enter the conversation about either of these fine lines of hope vs hype and champions vs charlatans, how do you avoid stepping on a hornet’s nest of controversy? A recent Signals blog by Ben McLeod offered some science communications basic principles such as being concise and knowing your audience. ISSCR recently issued a revised version of its guide to decisions regarding stem cell treatments, including how to evaluate unproven therapies.
A team from the Mayo Clinic published a report in Stem Cell Reports this month called “Designing persuasive health education for patients seeking unproven stem cell interventions.” The authors provide great detail about some the linguistic tactics used by the scam clinics and ways to counter their arguments.
They begin by writing: “Persuasive education should aim to correct and inoculate against misinformation about unproven SCIs (stem cell interventions) and instill a sense of caution among patients considering experimental interventions outside of a clinical trial.”
Jeanne Loring of San Diego’s Scripps Institute wrote an article for the publication of the Institute of Arts and Ideas in June with the headline “Stem cells, the hype and the dangerous reality; Why stem cells are so over hyped.” In the piece she asserts that scientists and journalists share the blame, noting that scientists too often fail to explain the nuances and limitations of their discoveries.
She ends the piece by offering a solution: “real stem cell breakthroughs—they’re coming and they will not need to be hyped.” Let’s hope she is right.
Yes, as a communication consultant, you could say I am a bit like a carpenter given a hammer and in turn thinking everything is a nail. I do think poor communication is a major obstacle for this field, but this blog is just one part of Signals seventh blog carnival, this one discussing hurdles impeding commercialization. Click here to read what other bloggers think are major hurdles.
Don Gibbons
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