June 8th, 2010
01:13 PM ET
By Miriam Falco
Concern over the aggressive marketing of stem cell treatments without solid evidence that the procedures actually work and are safe has led the International Society for Stem Cell Research (ISSCR) to launch a website called “A Closer Look at Stem Cell Treatments”.
According to ISSCR, the website is meant to “arm patients, their families, and doctors with information they need to make decisions about stem cell treatments.”
ISSCR President and stem cell expert Dr. Irving Weissman began developing the idea for this website more than a year ago because of a growing concern that many clinics and websites offer stem cell treatments, without providing evidence that the treatments work and/or are safe.
“We want to clarify what would and would not be a safe stem cell therapy,” says Weissman.
Dr. Lawrence Goldstein, another prominent stem cell researcher and ISSCR board member says this is the first organized attempt by an international body to help patients with questions about what these clinics are offering.
For the past decade, the promise and controversy over stem cells has fueled a passionate debate among politicians, researchers and patients.
Questions over funding and the type of research has made a lot of headlines over the years. What the various types of stem cells can do now or in the future often is up for debate. But actual stem cell treatment advances that have reached patients (with the exception of bone marrow transplants, which have been done for 40 years now), are still few. Yet if you Google ‘stem cell treatments,’ you’ll get nearly half a million hits.
Clinics are often located in Asia or the Caribbean. Patients are often asked to pay tens of thousands of dollars to have stem cells injected into their bodies. Many clinics claim the injections of their stem cells have cured many different illnesses from autism to cancer to multiple sclerosis and spinal cord injuries. Testimonials on the web seem to confirm some of the claims of recovery. However, research that can be reproduced by others (the gold standard for confirming medical discoveries) is often lacking. Companies will claim their techniques are patented and they can’t reveal specifics due for proprietary reasons.
For a Canadian study published in 2008 in the peer-reviewed journal “Cell Stem Cell” researchers took a snapshot of the many websites by specifically looking at 19 sites advertising stem cell treatments to consumers. The study concluded “the portrayal of stem cell medicine on provider websites is optimistic and unsubstantiated by peer-reviewed literature.”
This newly launched website offers a variety of tools for patients and patients’ families, including the top 10 things to know about stem cell research and what questions to ask the clinics. The ISSCR also is asking people to submit names of clinics for the ISSCR to review. ISSCR plans to investigate the claims of these clinics and whether there’s a medical ethics committee involved to protect the rights of patients and if the clinics are under the supervision of a regulatory body like the U.S. Food and Drug Administration or the European Medicines Agency.
The ISSCR website will list whether the stem cell clinics do or do not provide the requested information. Weissman says "we're trying to let people know what's unapproved in those treatment clinics."
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