Stem Cell Tourism and Patient Education

By Zubin Master, PhD

What is the role of public education and stem cell tourism? What type of education is available to patients, caregivers and the public? Can public education actually change people’s minds such that they won’t undergo an unproven stem cell-based intervention (SCBI)? These are the questions I will discuss here. But first, let’s just give a brief description of stem cell tourism and outline some of the proposals discussed to stop this industry.

Stem Cell SymbolThe “Stem Cell Tourism” Industry and Ways to Curtail the Market

Briefly, “stem cell tourism” is a term used to describe an Internet-based, direct-to-consumer advertised industry where patients receive unproven SCBIs for a range of diseases and injuries. Many clinics offering unproven SCBIs are in countries with lax regulations and enforcement. However, these clinics are also increasingly popping up in highly regulated countries like the U.S., U.K. and Australia. The term “stem cell tourism” is misleading because patients may not necessarily need to travel a great distance to receive such interventions, and focuses on patient behaviors instead of others involved in this market including regulatory agencies and the providers offering them. Moreover, there are some real risks to stem cell tourism. Beyond patients being financially exploited, there are several reports of tumors, lesions, tremors, other problems, and even deaths of individuals receiving unproven SCBIs. And there seems to be a stem cell “treatment” for just about every disease and injury, no matter how severe or benign if the patient can pay anywhere from $8,000-$30,000. Clinics advertise for serious conditions such as heart disease, stroke, MS, Parkinson’s disease, ALS, and spinal cord injury among many others. You might have also heard of major NFL stars receiving SCBIs for sports injuries, movie stars receiving anti-aging stem cell treatments, and even a U.S. Governor receiving stem cells for chronic back pain. The fact that celebrities and public figures are receiving untested SCBIs is likely to make it seem that they are safe and effective and only bolsters the market. Yet there are very few bonafide stem cell treatments out there. While more clinical trials using stem cells are underway (1), it will become increasingly difficult for patients to discern between a legitimate clinical study and a fraudulent intervention. And because of all the hype, ethical issues, and misconduct scandals having to do with stem cell research, having patients become injured due to an unproven SCBI is not only bad itself of course, but also can seriously stifle the stem cell field.

Several strategies to curtail this market have been proposed. Many have turned to increasing regulations, which have been met with limited success. But using legal mechanisms alone to regulate this international market may only partially address the problem because clinics have been known to move to a more permissive environment and rebrand themselves continuing business without a hiccup. I have previously discussed how scientists on the ground can share lines and reagents responsibly such that providers will be unable to obtain the necessary materials to start-up a dubious clinic (2). One bioethicist has begun a letter writing campaign to the U.S. Food and Drug Administration alerting the regulatory agency to questionable practices happening in our backyard (3). And several others have discussed how professional regulation by medical licensing bodies can take punitive measures towards physicians who engage in stem cell tourism practices (4). Last but not least, another major approach to quell the stem cell tourism market is to educate patients, caregivers and the public about stem cell research, the clinical translation process, and the dangers of unproven SCBIs. Several major organizations have invested seriously in public education on unproven SCBIs including the International Society for Stem Cell Research’s (ISSCR’s) A Closer Look website (5), Stem Cell Australia’s The Australian Stem Cell Handbook (6), and the U.K. MS Society’s Stem Cell Therapies in MS handbook (7) among others. Along with collaborator Professor Timothy Caulfield at the University of Alberta, we have invested in designing and disseminating a patient handbook as well (8). Yet despite these notable efforts, overall there seems to be relatively little publically available comprehensive information on stem cell therapies and tourism.

Public Education and Stem Cell Tourism

We recently completed a study published in Cell Stem Cell evaluating 50 scientific organizations and 125 patient advocacy groups to assess the nature and quality of online information available on stem cell therapies and tourism (9). To provide a comparison, we looked at educational content on the science of stem cells, ethical and policy issues, and information about stem cell treatments and tourism. While 51% of scientific organizations and 21% of patient advocacy groups had information on stem cell science, both sets of organizations had equally low levels of information on unproven SCBIs ranging from 12% to 16%. These results show that while a few groups have made serious efforts to educate patients and the public, overall, there is little information out there (9).

Several have argued that education may not alter patient demand for unproven SCBIs because this approach depends on a rational actor model that assumes individuals will behave rationally and do what is optimal, based on the factual information presented (10). It is likely that patients become less risk averse and are willing to take their chances. The term “What have I got to lose?” is a common response by patients (11). Yet this view fails to adequately consider the value of public education on unproven SCBIs. First, education alone can never be thought to sufficiently achieve major public health goals in the absence of other interventions, and second, education should aim to provide more than simple functional literacy (e.g., knowledge on stem cell research and unproven SCBIs). It should aim to promote communicative/interactive literacy to improve an individual’s capacity to act independently on knowledge, increase self-confidence, and permit greater autonomy and personal empowerment (12, 13). For example, we know that some patients who have undergone unproven SCBIs have regretted their decisions (14) and so, may be public education might help some reconsider options. Education may also be helpful to counter some misinformation e.g., provider claims that SCBI are risk free if they are from their own body. And it may also help those seeking registered stem cell clinical trials recognize dodgy clinics advertising unproven interventions as “experimental treatments.” We must recognize that the question of whether educational campaigns on stem cell therapies and unproven SCBIs are effective remains empirically unassessed.

Many earlier health literacy campaigns on anti-smoking or college binge drinking have relied simplistically on the transmission of information and were of limited success because they did not necessarily promote healthy behaviors. However, more recently, strategies to improve public health messages have increased in theoretical sophistication and we know that message framing can help shape individual perceptions and motivate healthy behaviors (15). So perhaps education campaigns on stem cell therapies and unproven SCBIs can begin to incorporate message framing and other methods to more effectively promote healthy behaviors. More research is needed to better understand the effectiveness of current patient education on SCBIs and to improve our understanding of patient perceptions of risk and benefits of receiving unproven SCBIs so that we may better design more effective educational material.

Guest Post was written by Dr. Zubin Master, Assistant Professor at the Alden March Bioethics Institute, Albany Medical College and Research Associate at the University of Alberta’s Health Law Institute.




13 thoughts on “Stem Cell Tourism and Patient Education

  1. It’s on ABC news, so it must be true!

    “We’re treating MS, ALS, muscular dystrophy, rheumatoid, optic issues with blindness. It’s pretty amazing, ” said Dr. Mark Foglietti, a plastic surgeon.

    “The procedure takes about two hours from start to finish and is virtually painless. “They are extracted, isolated and reinserted and will help in almost any part of the body,” said Foglietti.

    The Ohio Stem Cell Treatment Center is one of about 40 nationwide collecting research and according to Foglietti and Kellis about 80 percent of patients are showing signs of improvement nationally.

  2. Who is Zubin Master to think patients want or need educating? Has he failed to notice the mounting evidence of safety as more and more published studies are done on adult stem cell therapies? Is he not listening to patients who are getting quality of life improvements from stem cell treatment that they were unable to attain with conventional medications and risky surgeries? Why doesn’t he address the fact that FDA approved drugs kill tens of thousands of people every year? Where is Zubin Master’s voice in trying to curtail the pharmaceutical industry? Why isn’t he educating patients to be careful of medications that have serious side effects, can become addictive and can kill them?

    Who is Zubin Master really trying to protect?

      • Demonizing as in make into a demon? Not hardly. I’m asking who he is and what his motives are. After all, I’m one of the ones he wishes to educate. Don’t you think we should know more about someone who wishes to be the educator or should patients just take everything he says at face value?

      • Certainly Paul, but the demonizing is peripheral. The major point in Barbara’s comment is the obvious double standard. FDA approved drugs/interventions — sometimes wrongly called “proven” — can also be risky, even down-right dangerous.

        The second point that Barbara makes is the extent to which some experts appear to disregard patient voices. Personally, I find this quite understandable. Nevertheless, in my own field of expertise, I have found information from lay-people to be valuable even when the lay-person’s interpretation/theory is incomplete or demonstrably wrong.

        This brings me to the relationship between the expert and the layperson. It’s not a trivial matter to get this right, inevitably it depends upon context and specific circumstances.

        One point that Dr Master (and the authors of some of the articles that he references) might like to consider: patients often have a very specific focus. It does not help them much when they are lectured to in terms of broad generalities which may actually be quite misleading for a specific therapy.

        I know one medical doctor who uses a more patient-friendly approach. He takes the reverse approach. Analysing specific interventions so that they are put into context with the scientific/medical literature and theory as they are presently understood. Now that is what I call VALUABLE. Is he always correct? I doubt it. Who is? But it does give a layperson valuable tools to work with.

        Outside of mathematics/logic, nothing is ever “proven”. This is the most fundamental error made by Dr Master. The EPA may approve a drug/stem-cell for treatment for this or that condition. In so doing, we must always be mindful that they are throwing a regulatory on/off switch in a sea of uncertainty. The switch may be on or of, but throwing it “proves” nothing.

        • Brian, you make some excellent points. My sense is that Dr. Master was writing more with the notion of an academic/industry audience and not so much with patients in mind as part of that audience. In part I take responsibility for that as now in retrospect I wish I had suggested that he keep in mind that patients make up an important part of the readers of this blog and should be considered in that post.

          • It’s a problem that many of us live with. I am reminded of a criticism levelled at me by my missus: “Your letters are really fun and interesting to read, but your scientific articles just give me a headache…”

  3. I’m not sure where to start with this post. It reminds me of many discussions we’ve had in the past. It seems Mr. Master is unaware of all the advocacy work being done by scientists like yourself Paul, Lee Buckler, Alexey Bersenev just to name a few…and advocacy groups like PFSC, Stem Cell Pioneers, STEMSO, CellR4, just to name some more. Even though we differ on the type of stem cell education that we are involved in, it’s still educating the public on stem cells! I assure Mr. Master that more “common” people are getting stem cells for chronic illness/ conditions than super star athletes or movie stars that make the big headlines. Actually it’s not difficult to discern between reputable clinics and shady clinics because the patient networks are so connected today. “What have I got to loose,” may be the attitude of some patients, but that is a sweeping generalization. What have I got to loose never even crossed my mind. Most patients who feel they have no FDA approved options actually do feel that way about the toxic, extremely dangerous approved maintenance drugs prescribed by our physicians. After you’ve exhausted all options and adult stem cell is where you find yourself going next…It’s more of an attitude of “why isn’t this available to all patients across the board who could benefit from this?” It’s a feeling of hope and relief! I don’t know what patients Mr. Master is referring to, but I think he’s way off the mark. “More research is needed to better understand the effectiveness,” has been being said for the past decade. Mr. Master should look at the Japan model to better understand that safety and efficacy have already been proven in thousands of patients here and abroad. Bring safe and effective stem cell treatments from bench to bedside in a timely manner is what Japan is doing. Hopefully the United States will stop stifling medical innovation and follow suite. Patients and their families are suffering because of the archaic policy’s that our bureaucratic agencies cling to. If Mr. Master would consider tapping into our large network of patients who’ve all been treated with our own stem cells then he could at least might have a balanced view point. But I won’t hold my breath. Patient voices haven’t mattered much or changed the minds of those who’s minds are completely made up. Assumptions are often wrong, so if I’ve missed the mark or read anything into this article that is way off base, then I’d love to have a real conversation with Mr. Master on behalf of the patient community. Communication is key to understanding. Thanks Paul for posting this article.

    • Hi Jenny. Thanks for this comment, which I think is very helpful and insightful. We don’t always agree (who does?), but I agree with much of what you wrote and that communication is a key.

  4. The USA can do amazing things when the path is cleared for progress. I believe eventually we will catch up with the rest of the world in the area of stem cell treatments, once the dog thats humping the leg of progress is shaken free. Until that time I for one will be looking to other countries who are taking the science seriously and moving it forward to help patients. This is disturbing to me, and I’m sure to many others, as we were once the leaders and innovators of the world.

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