Sensational media reports and devious marketing have made stem cell tourism a multi-billion dollar industry. Before your patients span the globe to find an elusive cure, the first step is an honest conversation about the realities of these alleged miracles.
Cheri Deal, PhD, MD, chief of Pediatric Endocrinology at the University Teaching Hospital Ste-Justine, in Montreal, first encountered stem cell tourism when one of her patient’s families wanted to seek treatment for their baby’s blindness associated with septo-optic dysplasia, one of the causes of congenital hypopituitarism. In the family’s desperation, they hoped to travel to Asia to “cure” the girl’s blindness with stem cell treatments, and were told that this must be done as soon as possible if the therapy is to work. Deal began reaching out to other pediatric endocrinologists and to pediatric ophthalmologists to see whether others had similar requests.
“They were all Internet consumers of health information,” Deal says, “and saw claims on the web that this would restore the sight of their child. When I queried other pediatric endocrinologist colleagues, many had anecdotal tales of patients elsewhere in Canada and in the U.S. doing the same.”
Stem cell tourism is, unfortunately, a growing industry, with a market estimated to be in the billions, and between 700 and 1,000 clinics worldwide. The numbers are hard to pin down because these clinics are difficult to track and regulate, because it’s largely an Internet-based industry. If one clinic gets shut down by a government agency that takes notice, another one will pop up to replace it, and business will continue as usual.
“If you’re against stem cell tourism it’s almost like you’re against being open-minded or you’re against patient health. It’s fascinating how it’s been positioned in popular culture.” — Timothy Caulfield, LLM, FRSC, FCAHS, a professor at the University of Alberta, Alberta, Canada
Last, Best Hope?
Clinics promising stem cell therapies prey on the desperate, either crippling a patient’s family with an enormous financial burden (treatments cost an average of $30,000), or sometimes actually crippling the patient. The clinics providing these procedures use web advertising that does not adhere to the same ethical framework as in North America. Deal says that leads to “at the very least, thousands of dollars spent for nothing, and at the worst, complications that could culminate in prolonged hospitalizations, permanent handicaps, or death.”
But patients continue to seek these treatments, because they fall victim to “scienceploitation,” a term coined by Timothy Caulfield, LLM, FRSC, FCAHS, a professor and research director at the University of Alberta and a lawyer who specializes in medical ethics. According to Caulfield, it’s the idea of taking genuinely exciting science and exploiting it to sell products. “It’s an area that has received a huge amount of coverage in popular culture,” Caulfield says. “The idea of stem cells and stem cell research — the phrase evokes ‘cutting edge.’ It’s almost a marker of hope for the future.”
Stem cell therapies have indeed permeated popular culture, with clinics marketing their product through direct-to-consumer Internet campaigns, social media, patient “testimonials” on blogs, and even through reputable news outlets. A Google search for “stem cell treatment” turns up a number of sleek websites, all promising stem cell therapies to help with everything from cancer and diabetes to autism and aging. “Clinics can leverage that kind of popular culture coverage in order to market unproven therapies,” Caulfield says.
Compounding the problem is the fact that this is a hotly contested issue, with passionate people involved, especially those desperate patients willing to travel halfway around the world in a last-ditch effort for their health or, more and more often, their child’s health.
Caulfield and Amy Zarzeczny, a health law scholar at the University of Regina, wrote in a 2012 article in Canada Family Physician that it is “essential that physicians be sensitive to the motivations underlying the interest in stem cell tourism.” So here we’ll take a look at the motivations and the mindsets of patients who are ready and willing to leave it all behind, the best approach for handling these kinds of questions when they come up in your office, and what the future holds for stem cell research.
In 2006, Peyton Manning, then quarterback for the Indianapolis Colts, injured his neck in a game against the Washington Redskins. He continued to play without much complaint or incident until 2010 when he reinjured his neck, leaving him in pain and unable to throw the ball with as much strength and accuracy as he — and his fans — were used to. So in 2011, before undergoing neck surgery, Manning reportedly traveled to Europe for a stem cell procedure, in which a clinic took fat cells from Manning’s own body and used them to regenerate nerves in his neck.
The news, of course, made headlines, and while there were a few physicians and researchers criticizing Manning’s treatment, many news outlets uncritically reported the news, with some even going so far as to say the stem cell treatment saved Manning’s career.
Last December, Gordie Howe, the 86-year-old hockey legend, underwent a stem cell procedure in Tijuana to treat a serious stroke. Howe was injected with neural stem cells and stem cells from bone marrow to repair brain damage and improve blood circulation. Like Manning’s, Howe’s alleged stem cell procedure made headlines, and again, many news outlets used words like “miracle” to describe Howe’s apparent progress, with almost no negative commentary about the treatment.
These world-famous athletes then become almost spokespeople by proxy, and the efficacy of stem cell treatments becomes assumed. Caulfield says that these kinds of stories are often reported in science-free spaces. “There’s almost no critical analysis of the science or the risks or the phenomenon of stem cell tourism more broadly,” he says. “They’re just presented as a sports story, and the efficacy of the treatment is taken for granted.
All of these kinds of portrayals help facilitate the broader industry,” Caulfield continues. “It creates this perception in popular culture, that these treatments are efficacious.”
Stories like these, then, are intriguing to patients who may be considering stem cell therapies, and they give rise to other stories in newspapers and on daytime talk shows — human interest pieces on families desperate to save their child or themselves. And yet again, these stories usually are presented uncritically, out of the realm of actual science. Some newspapers even tell readers where to send money to help their stories’ subjects afford their procedures. “[The stories] are often in a section of the paper — maybe even the lifestyle section — that perhaps doesn’t have a tendency to be as critical or scientifically focused,” Caulfield says.
Caulfield and his colleagues are now studying new media, where patient anecdotes touting stem cell treatments’ efficacy appear on Twitter accounts and blogs. Research has shown that Twitter does shape public opinion, and stem cell clinics have taken notice, using Twitter to market their product. Of course, there is very little representation of risk — it’s hard to fit that in 140 characters — and the Twitter feeds rely mainly on patient anecdotes to shape the narrative.
However, these patient anecdotes provide some insight into why people go to stem cell therapy clinics. These patients believe there are no side effects, or they believe it’s their only and final choice, and since they’re going to die anyway, they’re going to die trying everything they can. These are people who think they have nothing to lose, or have lost faith in their own medical systems. Caulfield says they feel as though they’re pioneers and they’re being forced to seek treatment in other countries because their own has abandoned them. They also tend to believe that some kind of FDA bureaucracy or Big Pharma conspiracy is what’s keeping stem cell treatments out of countries like Canada, the U.S., and the United Kingdom.
Clinical Trial and Error
Desperation plus the media’s promise of a “stem cell revolution” can certainly drive a person to seek out these therapies in faraway places. Patients also tend to view clinical trials as a regulatory necessity to get these treatments approved, as opposed to an important clinical translation step to make sure these treatments actually work. “So often when you do a good clinical trial it turns out it doesn’t work,” Caulfield says. “And that’s almost, in fact, the norm.”
Terry Davies, MD, of the Icahn School of Medicine at Mount Sinai in New York, who is currently studying human thyroid stem cell replacement, agrees. “The concept of a clinical trial is vague in the public mind,” he says. “The idea that such a study might work is enough to propel the desperate. The fact that most such trials actually fail is not always discussed. In addition, the fact that such a trial may have worked in animals does not mean it will work in humans.”
Deal says that stem cell researchers are in a difficult position, because they have to “hype” their work in order to draw public interest to continue research support. “The down side, however,” she says, “is sometimes an unwarranted optimism that the patients interpret to mean that doctors can now cure anything with stem cells.”
Davies says another problem when researchers “hype” their work is that private wealthy entrepreneurial donors descend, hoping that their money will influence the work and buy some sort of cure. “I don’t believe that hyping research is good for anyone,” he says. “Certainly we have seen the hype with islet stem cells for use in diabetes patients for quite some years but clinical trials are still far off. Of course, the more common the disease under discussion the more likely the media will be interested and allow the researchers to stretch their observations. Such talk can attract nontraditional research funding and has been seen over and over again to often be misguided.”
However, Davies points out that going through the proper channels tends to produce good results. “There is good evidence that awards made on the basis of peer review (such as NIH grants and VA grants) correlate well with productivity, publications, and patent applications, and I doubt that peers are susceptible to such hype,” he says.
Of course, the potential for stem cell therapies remains huge. “The potential could transform modern medicine as we now know it,” Davies says. “Right now there appears every chance of successfully developing techniques to allow repair/replacement of human tissues and organs which was beyond our imagination just a few years ago.”
He points to the fact that physicians already use bone marrow stem cell transplantation routinely in their medical practice, saying that it is “highly likely that stem cell biology will also become an important part of medical practice allowing recovery from trauma and diseases of the nervous system, the liver, the pancreas, and the thyroid to name just a few.”
But the progress made in these areas will be slow. And until valid data — controlled trials with full data transparency — showing the efficacy of stem cell procedures is presented, Davies says there is “no place for stem cell tourism in the real world.”
Stem cell treatments are very expensive, so patients do talk to their doctors about stem cell treatments before packing up and heading out. It can be tempting to be dismissive of their questions. Taking a condescending tone or being overly negative when trying to dissuade a patient from risking so much can seriously harm the doctor/patient relationship. Appeals to reason can be met with bitter defensiveness. On the other hand, according to Caulfield, research has shown that if a physician takes a neutral approach or says “I don’t know,” patients will take that as an endorsement. So it then becomes a delicate balancing act when responding to their questions.
Indeed, doctors play an important role in this context, so it’s crucial for them to think about ways to constructively engage with their patients when these questions arise. “Physician/patient discussions are one of the most effective tools that we can use to curb this phenomenon in a constructive way,” Caulfield says.
The best way for physicians to engage with their patients in a positive way is to communicate some basic truths to them, which can be very persuasive. “For [doctors] just to be able to provide patients with the tools to investigate in a more critical manner is valuable,” Caulfield says. “Ensuring that physicians have resources that they can point patients to is helpful because then they’re just trying to give the patients the tools and support that they need to make an informed decision.” For instance, doctors can refer their patients to the International Society for Stem Cell Research’s Patient Handbook on Stem Cell therapies, or even Caulfield’s own numerous publications. Patients also need to understand what constitutes a clinical trial, and whether any potential therapy they are exploring has been adequately investigated in a well-run, statistically relevant clinical trial that has been published in a peer-reviewed journal.
In fact, Deal was able to point patients to Caulfield’s work to dissuade the family of her young patient from traveling to Asia for treatment of her septo-optic dysplasia-associated blindness. However, Deal noted that a child of another family who had received stem cell therapy for a similar condition prior to Deal’s discussions with her patient’s family developed ataxia; the family is convinced the stem cell treatment is responsible.
“The potential could transform modern medicine as we now know it. Right now there appears every chance of successfully developing techniques to allow repair/replacement of human tissues and organs beyond our imagination just a few years ago.” — Terry Davies, MD, Icahn School of Medicine, Mount Sinai Hospital, New York, N.Y.
Hope for the Future
Still, web-based, direct-to-consumer marketing is rampant, and the promises made on these websites are not accurate, because there is very little oversight. The only regulatory tools that exist are largely complaint-driven, so they do little to keep these clinics and websites in check. Caulfield says he’d like to see regulatory agencies be more aggressive with these clinics and websites that they have jurisdiction over.
But that may be a hard fight yet. Stem cell tourism has reached the status of complementary and alternative medicine in the minds of many patients. “If you’re against stem cell tourism, it’s almost like you’re against being open-minded or you’re against patient health,” Caulfield says. “It’s fascinating how it’s been positioned in popular culture.”
Ultimately, stem cell tourism, its marketing techniques, and its “scienceploitiation,” hurt legitimate stem cell research by creating patient expectations and confusing the regulatory process. “It confuses even the research agenda,” Caulfield says. “All this inappropriate marketing is bad for the good stuff.”
— Bagley is the associate editor of Endocrine News. He wrote about the highlights of ENDO 2015 in the May issue.