By Tran Nguyen Templeton on September 2nd, 2010 • 12 comments
It’s impossible to pick up a paper and not read about the latest news and controversies around stem cells. This is in no small part due to the increasing demand for novel therapies. As an example, more and more children every year are diagnosed with neurobehavioral disabilities like ADD and autism, which has driven desperate parents in need of effective treatments to look to stem cell therapies for hope.
Unfortunately, the misinformation surrounding stem cell treatments has opened the door for scammers. These fraudsters have seized on another trend, medical tourism, which for years has been the choice of many who look to pursue overseas plastic surgery or other medical procedures at lower costs than in the U.S. The result: a new scam known as “stem cell tourism” is quickly becoming its own brand of exploitative business. As compared to legitimate subtypes of medical tourism, however, stem cell tourism comes at a big pricetag, both financially and emotionally.
Before you, a family member, or a friend dips into that savings account to invest in stem cell treatment, here are some things to keep in mind when investigating the claims of stem cell center websites:
High pressure sales tactics should be used by street hustlers, not by real medical experts. Recently a representative of the American Stem Cell and Anti-Aging Center (ASCAAC), a clinic located in Ecuador, visited a special education school in Latin America and urged the director to gather the mothers of the school to hear a talk from a Dr. Albert Mitrani, one of their doctors. After sharing miracle stories of children with low-functioning autism talking within hours of stem cell treatment, the ASCAAC representative shared that she was also planning to bring a friend with lupus to the center in Ecuador. This kind of personalized admission from a young woman who seems trustworthy can sometimes seal the deal.
Representatives of these organizations will also often say things like, “Just give us a little bit of your time, it wouldn’t hurt.” But what’s more harmful than false or, at the very least, premature hope, sold with a $25,000 price tag?
Speaking of $25,000 pricetags, it’s not unheard of for unauthorized stem cell treatments in foreign countries to cost upwards of hundreds of thousands of dollars. Add to that the cost of managing potential complications from the treatment as well as extra supplements the clinic will likely ask you to take, and you’ve gotten yourself in a serious financial predicament.
Stem cell treatments are still in the clinical and experimental stages, meaning scientists have not conducted enough research to conclusively know what works, doesn’t work and what the side effects are. Generally universities that conduct these types of treatments are the ones to provide the payment, rather than the other way around, in order to recruit patients for their studies.
ASCAAC gives itself loose credibility by including “American” in its name. ASCAAC’s website, on its front page and on other pages, boasts of offering to their patients spas and an “executive luxury package” at an associated 5-star hotel. You would think you were taking a luxury vacation rather than undergoing an important medical procedure. As well, one section of the website is dedicated solely to the rejuvenation of skin and aging. All of this against a serene blue backdrop, surrounded by photos of perfect-looking doctors in white lab coats and happy patients. Chances are the photos are stock photos, taken from the Internet or purchased from professional photographers. Keep in mind that the websites of these kinds of places will most likely look professional. After all, with the millions they make a year, surely they invest some of it in a handsome website.
Rather than links or referrals to clinical trials and evidence-based medicine, stem cell centers rely heavily on patient testimonials and anecdotes. And while these patients may have experienced improvements in their conditions, there’s no discounting what years and years of research have said about the “placebo effect”. While it is not our intention to make assumptions about the perceptions of others, it’s difficult to disentangle any other treatments the person may have received or simply the power of hope.
Even smart folks can fall into traps by overly trusting forums, which may have testimonials from people paid to travel forum to forum, spreading the word of the spammers. As well, don’t let a domain that ends in .org be a sign of veracity. These days anyone can buy a .org domain name. When doing your research, check the sources or other articles on the website. Does the entire website devote itself to the benefits of stem cell treatments, yet mentioning very little about the fact that scientists are currently in the experimental stages? If so, you’re better off looking elsewhere, such as governmental (.gov) or educational sites (.edu). Your best personal option is to consult with a specializing and reputable doctor in the field of the illness you’re investigating.
According to Dr. George Daley in an interview on NPR, at this time, legitimate stem cell treatments have only been effective for a very small number of diseases, mainly blood-based illnesses such as leukemia and thalassemia. Others are in the research process.
Conditions like Parkinson’s, hearing loss, autism, lupus, etc. stem from different dysfunctions in the body, so what makes us assume that a one-size-fits-all approach to medical treatment is the way to go? Really, let’s think about it – for conditions such as autism, in which we do not know yet where the various deficits lie and for what exactly we are treating, having stem cell treatment would merely be an expensive shot in the dark.
Unauthorized stem cell centers might try to comfort you by saying that, with the use of your own stem cells, there are no ethical issues. Tell that to the woman who traveled to Bangkok to receive treatment for her lupus nephritis. The doctors there extracted stem cells from her bone marrow and injected them into her kidneys, resulting in lesions and masses which doctors claimed were never-before-seen. Her body began to fail her, her kidney needed to be removed, and she died within 2 years.
As an example of the language that these institutions use, the XCell-Center in Germany states on their homepage (which has typos, by the way – another red flag), “Since the start in January 2007, more than 3000 patients have safely undergone our various stem cell treatments.” Safely undergoing treatment does not equate to success, improvements or cures in conditions. These unscrupulous institutions want to find a way to take your money, and they don’t want for their words to come back and bite them.
The fact of the matter is – desperate patients shouldn’t have to wade through websites and determine, with little to no criteria, whom to trust. Other than what we have offered as tips, to protect consumers and the integrity of the scientific community, the International Society for Stem Cell Research (ISSCR) offers an important and helpful service of vetting so-called stem cell treatment centers for consumers by examining the legitimacy and scientific validity of such places. To find out more information about places which might be selling themselves to you, check out ISSCR’s Closer Look at Stem Cells website. An additional resource for patients is the website of the Harvard Stem Cell Institute.
About the author: Tran Nguyen Templeton is the program advisor of Colegio Monarch Guatemala, a therapeutic school for children with neurobehavioral disabilities. Tran holds a Masters Degree from the Harvard Graduate School of Education.
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