Scientists warn of “rogue” online stem cell clinics
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“Current research has shown that these cells can potentially be used to treat spinal cord injuries (regeneration of neural tissue) and heart disease (regeneration of myocardial muscle cells),” says one.
But sites claiming to offer effective stem cell treatment could be charging patients close to $22,000 and, “examples of serious treatment side effects can be found,” say Canadian scientists.
Too often, “rogue clinics around the world exploit patients’ hopes by offering unproven stem cell therapies, typically for large sums of money and without credible scientific rationale, oversight or patient protections,” says the International Society for Stem Cell Research (ISSCR).
And, “Despite the immature state of stem cell medicine, patients are seeking and accessing putative stem cell therapies in an early market in which direct-to-consumer advertising via the internet likely plays an important role,” says Dr Tim Caulfield (right), together with Darren Lau,Tania Stafinski and Devidas Menon from the University of Alberta.
Patients should be wary of claims made by online stem cell clinics, they say, pointing out direct-to-consumer portrayal of stem cell medicine is often, “overoptimistic given the peer-review literature”.
More research is needed either to substantiate these clinics’ claims or to develop stem cell therapies that actually work, they state in Stem Cell Clinics Online: The Direct-to-Consumer Portrayal of Stem Cell Medicine, just published in Cell Stem Cell, going on “numerous” questions remain unanswered and although scientists don’t generally recommend the therapies for general access, “patients are nonetheless accessing supposed therapies from privately operated clinics across the world”.
Cited are Beike Biotech, a Chinese clinic specializing in neurologic disorders, and which claims to have treated more than 3,000 patients at its 24 hospital clinics in China, ACT, from Turks and Caicos, and Emcell, from Ukraine, which claim to have treated over 700 and over 2,000 patients, respectively.
“Many of these clinics advertise directly to patients via the internet,” say the Canadian researchers. “This mode of communication is an important means of reaching patients, with 8 million Americans searching for health information on the internet on any given day. Indeed, given the uncertain regulatory status of stem cell therapies, the internet may be the only means by which these clinics are able to reach patients in North America.”
In August, 2007, Caulfield and his colleagues ran content analysis of sites pulledl up during a Google search for stem cell therapy or treatment.
“This snapshot of online stem cell clinics returned 19 websites claiming the use of stem cells for the treatment of disease,” they say, continuing
“In addition to treating disease, eight (42%) of these sites treated otherwise healthy patients for cosmesis (three sites, 16%) or health enhancement (eight sites, 42%). Importantly, these clinics self-reported the administration of stem cells. Clinics’ uses of the stem cell label were taken at face value. Despite adopting this label in the following analysis, we have no knowledge of the true stemness of clinics’ interventions.
Adult autologous stem cells were most commonly provided (9 sites, 47%), followed by fetal stem cells, cord blood stem cells, and embryonic stem cells, say the authors.
“Stem cells were most often obtained from the patient’s bone marrow (7 sites, 37%) and/or peripheral blood (5 sites, 26%), although some sites obtained stem cells from patient fat, blood or marrow donors, aborted fetuses, patient’s skin, animal tissues, and human placental tissue,” the state.
Treatments, “were most commonly administered by infusion into cerebrospinal fluid (6 sites, 32%). Peripheral intravenous administration was common as well (6sites, 32%). Four sites (21%) obtained access to deep body cavities. ”
Caulfield, Lau,Stafinski and Menon say their findings, “might suggest that providers are making inaccurate claims in their direct-to-consumer promotional materials,” and, “Patients may not be receiving sufficient and appropriate information and may be shouldering inordinate risks. Clinics may also be contributing to public expectations that exceed what the field can reasonably achieve.”
Emphasising information available from websites, “may not be indicative of the information actually shared with patients during their clinical encounters; the aggregate data, collected from a heterogeneous group of clinics, cannot be used to evaluate the claims of any particular clinic; and finally, we do not test the accuracy of websites’ claims directly by analyzing actual outcome data,” the team nonetheless says there’s a lack of high quality evidence supporting stem cell clinics’ claims.
“Even supposing that clinics have indeed observed successful recovery from chronic disease posttreatment, a lack of good evidence precludes a valid or precise inference that the observed improvement is attributable to the interventions,” they state.
“If, in fact, the interventionswere not effective, then patients would have been subjected to inappropriate risk and financial burden.”
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ISSCR – The International Society for Stem Cell Research Releases New Guidelines to Shape Future of Stem Cell Therapy, December 3, 2008
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