If you start looking into stem-cell tourism, it doesn’t take long before you come across Stem Cell Treatment Monitor, a watchdog blog maintained by Doug Sipp. Subtitled “a skeptic’s guide to stem cell pseudomedicine,” the tone of Stem Cell Treatment Monitor is fierce, partisan, exhaustively detailed, and often very funny. Because Sipp has been tracking stem-cell scams for years, he has developed a rich understanding of the various players involved. He graciously agreed to my request for an interview by email.
CE: How did Stem Cell Treatment Monitor come about?
DS: I had become frustrated with the enormous amount of bad information that is being used to promote scientifically groundless clinical uses of “stem cells” on the Internet. I have to give a lot of credit to other skeptic Web sites, such as Ben Goldacre’s Bad Science, Respectful Insolence, Science-Based Medicine, and of course Stephen Barrett’s Quackwatch, which provide critically minded breakwaters against the tsunami of misinformation and disinformation about medical issues online.
I should point out that there is a lot of real stem-cell research being done as we speak, some of which has showed promise in later-stage clinical trials, so I most certainly do not write the whole thing off as bunk. What I am trying to do, in part at least, is point out that there are many unscrupulous characters who seek to preempt that responsible and ethical research and turn a quick buck (or several million) by using the words “stem cells” in their advertising.
I chose the blog format because after writing in journals and speaking at academic meetings, it seemed to me that I was just preaching to the saved. I wanted to reach people who might actually be considering such treatments, and it seemed to me that this format would give me better exposure, as well as a kind of rhetorical license that is not generally adopted in academic discourse (and for good reason!).
CE: Well, now that you mention “rhetorical license,” let me ask you something else. You don’t exactly mince words on the blog. I’m thinking, for example, of the recent headline you used about a notorious stem-cell doctor in Florida: “Grekos kills again.” Not that the headline is necessarily inaccurate; this doctor is the subject of a homicide investigation, after all. But I’m curious as to whether you get a lot of pushback from the clinics and people you write about.
DS: I do use clear and colorful language, which comes from a combination of the outrage I feel at seeing low-minded charlatans abuse both patients and science in their chase after easy profits, and the desire to do something more than just mutter and curse about it under my breath. Again, this style of discourse is not unusual for a skeptical blog, and neither are the inevitable threats and attacks from those I write about.
Rhetoric aside, though, accuracy is my primary goal when writing, and is also my best defense. It’s not like I am enraged all the time in my real life. If anything, it’s kind of a stylistic voice I get into when blogging. I don’t like the idea that businesspeople feel they can run roughshod and unchallenged over scientific and ethical principles and that people in academia will be too balanced, objective and mild to call them on their BS.
CE: You live in Japan. Am I right in thinking that journalists and academics in Asia and the Pacific region have been quicker than Americans to sound alarms about stem-cell tourism? And if so, is there a reason?
DS: That’s an interesting question, and one that I hadn’t considered before. Most of the critical reports I first recall seeing about the phenomenon are from Western publications, like Science, Nature Biotechnology, BBC, and The Los Angeles Times. That said, there have been lots of uncritical human-interest stories on subjects like “Local boy seeks stem cell cure in China” in local media as well. There has, however, also been coverage of varying quality from media in places in Asia, like India, Hong Kong, and Singapore. My overall impression has been that this is a worldwide phenomenon on all fronts. Like organ trafficking, it is one of the dark sides of the globalization of medicine.
In general, though, you can find the vast majority of U.S.-based stem-cell outfits in Florida, Texas, Arizona, or Southern California. It must be something about proximity to the Mexican border and an affinity for conservative politics.
CE: What is it about the proximity to the border and conservative politics? Do you have a guess?
DS: My guess is that shouting about the efficacy of various “adult” stem-cell treatments pushes a couple of hot buttons common to the conservative and libertarian right.
The first hot button is resistance to human embryonic stem-cell research on religious and moral grounds. By claiming that adult stem cells are already efficacious in treating a wide range of conditions, advocates of the anti-human embryonic stem-cell research position seek to undermine the importance of continuing work in this area.
The second hot button relates to a question about how clinical uses of stem cells should be regulated. Under current laws, the FDA has authority over the marketing of a wide swathe of stem-cell applications, many of which are defined as biologic drugs. Many organizations are seeking to deregulate the clinical use of stem cells by reclassifying it as “practice of medicine,” which is regulated at the state level. It appears to me that a certain amount of freedom to operate is granted to companies in states in which there is already popular support for prohibition of embryonic stem-cell research, deregulation and “states’ rights.” My impression was that Rick Perry was playing a clever political card when he made the announcement of his putative adult stem-cell treatment immediately prior to announcing his bid for the presidency, as he could claim that he supported all these things while simultaneously portraying himself as the brave pioneer who undertook a first-in-human trial of a new technology using his own body.
Prevailing political and religious climates in these states are enabling conditions for the premature clinical application of “adult” stem cells domestically, while proximity to the border is simply an issue of convenience for companies that recruit American patients to be treated in Mexican clinical affiliates.
CE: Tell me how your collaboration with 60 Minutes on their stem-cell sting operation came about.
DS: As I understand it, the producers of the first 60 Minutes exposé had seen a video of a presentation I made at the World Stem Cell Summit in Baltimore in 2009, and contacted me on that basis. But I should also note that I was not the originator of the tip that led CBS to focus on Larry Stowe and Frank Morales, the targets of the sting. That credit goes to Stephen Byer, who has been maintaining a list of companies that have sold dubious stem-cell treatments for ALS for several years.
CE: You must have been satisfied to see Stowe and Morales arrested a few months ago.
DS: I don’t know if satisfied is the word I would use. There are hundreds of companies and organizations that make substantively similar claims, and have been doing so with impunity for years. Stowe and Morales just happened to get caught doing it on camera. If they deserve to be in jail, then there is a long, long list of others who should join them.
CE: These stem-cell companies tend to respond pretty vigorously to critics, often with threats of a defamation suit. Legal threats led the International Society for Stem Cell Research (ISSCR) to suspend the launch of part of its patient safety website. Is this something you worry about?
DS: Legal threats intended to prevent public commentary are always a problem, especially when they are leveled by millionaires against academics (as I’m sure you know!). I do my best to fact-check and litigation-proof everything I write before publishing it, but it is impossible to prevent someone with deep pockets from trying to bankrupt you in the courts. I am encouraged by a number of recent cases in which academics, doctors, and ordinary people criticized charlatans, were threatened with legal action, and prevailed. Frivolous lawsuits, even more than patriotism, are the last refuge of a scoundrel.
CE: Care to mention a few names, or is that too dangerous?
DS: I don’t know who threatened the ISSCR. I have personally received threats of varying intensity and seriousness from Elisees (which I blogged about), Stemedica, anonymous commenters on my blog, and the proprietors of Medisophia, an apparently no-longer-active company in Japan.
CE: Of all the quack scams that are out there in the world waiting to be exposed, why did you pick this one in particular?
DS: I focused on stem-cell pseudomedicine mainly because I am more familiar with the field of science in question, and it appeared to me that the marketing claims were getting out of control and going unanswered. There are almost limitless opportunities for anyone who wants to tackle the exploitation of weak science and bad medicine in other areas. I just happened to settle on stem cells due to my exposure to the actual science that is being done in this field.
CE: What is your background, and how did an American wind up in Kobe, Japan?
DS: Now that’s a long story! The short version is that I first came to Japan in 1991, and worked in software and science publishing before joining RIKEN, which is a government-funded research institute, at the Center for Developmental Biology. After mainly doing administrative and communications work there since 2002, I was appointed head of a research unit in 2010. My main focus is on regulatory, policy, and ethics issues in the clinical translation of stem-cell research.
CE Let me ask you something that I’ve been curious about. Even with some of the worst, most fraudulent, most exploitative stem cell scams, there seems to be a veneer of scientific respectability involved. For example, Stowe and Morales were apparently planning to use umbilical-cord stem cells provided by a pathology professor at the Medical University of South Carolina. If they were running a pure scam operation, why bother? Why not just inject patients with a placebo and tell them they were getting stem cells?
DS: It seems to me that people who engage in the misuse and abuse of science will go to great lengths to convince themselves of the rightness of their errors, to the point of self-deception. So, charitably, it may be that they believed their own claims. At the same time, it is not clear that whatever Stowe and Morales were marketing was bona fide stem cells -- only that they had made an arrangement with a person at MUSC with no evident publication record in stem-cell research to do some unspecified processing of umbilical cord tissue. It is equally possible that this was just another marketing ploy, intended to lend a veneer of authenticity by involving someone from academia. Stowe was notorious for making unsupported claims of such connections.
CE: If you cross the river from Minneapolis to St. Paul, you can visit the Museum of Questionable Medical Devices, which is a spectacularly entertaining collection devoted almost entirely to quackery. Seen from a distance of 50 or 80 years, many of the devices there look ridiculous, but they must have seemed plausible at the time, and their plausibility often seems to be a product of the particular age in which they emerged. In the early and mid-20th century, for example, when electricity must have still seemed kind of magical, you can see lots of absurd devices featuring electricity and electromagnetic current. I’m wondering if there is something about our own age that makes stem cell quackery seem plausible in a similar way.
DS: The parallel with electricity is an interesting one, but I think the real historical roots of the current fascination for cell therapy are in the “rejuvenation” quackery of the early 20th century that used glands and extracts from animals such as goats, sheep, and monkeys to “restore flagging manly vigor,” etc. The book Charlatan by Pope Brock is an extremely interesting and well-written account of how John Brinkley sold enough “goat gland” surgeries to become one of the richest people in the U.S. back in the 1930s. The idea that cells may be all-curative, safe, natural, ethical, miraculous, and just what the doctor ordered is not a far leap from Brinkley’s bald-faced hucksterism.
