For centuries, “snake oil salesmen” have used cleverly crafted acts to peddle fake medicines. The modern-day version of the medical conman has zeroed on stem cells, selling treatments with unproven effects and unknown risks. Using online marketing campaigns, stem cell “clinics” around the world are luring in desperate patients with questionable promises. Their web sites boast impressive data (from uncontrolled studies) and flattering (albeit anonymous) patient accounts. It’s called “stem cell tourism,” and it’s got scientists concerned.
“The false claims and unscrupulous methods through which some clinics attract patients has quickly become one of the most important concerns facing the field today,” said Drew Lyall, Executive Director of the Stem Cell Network in a statement.
Some clinics market the exact same treatment for conditions as diverse as autism, heart disease, diabetes, osteoarthritis and stroke. Not only is it unclear how the cells land in the right place in the body to have any benefit (on a recent episode of 60 Minutes, a patient with the nerve-demyelinating disease multiple sclerosis received her stem cell “treatment” in her thumb), it is also unclear whether the cells survive long enough to do anything at all. With little to no follow-up, patients are sent home (sometimes the following day) with little more than a thank you and a much lighter wallet.
“Stem cells do hold tremendous promise for the treatment of many serious diseases. Yet there are organizations out there that are preying on patients ’ hopes, offering stem cell treatments—often for large sums of money—for conditions where the current science simply does not support its benefit or safety,” said Irving Weissman, MD, President of the International Society for Stem Cell Research in a statement released on June 8.
Patients with fatal, incurable diseases such as amyotrophic lateral sclerosis (ALS) often feel they have nothing to lose in trying experimental treatments like stem cell transplants. But such treatments do have risks like any other surgical procedure or injection, and could potentially burden patients with painful side effects.
To arm patients and their families with the tools they need to make informed decisions about stem cell treatments, the ISSCR has launched “A closer look at stem cells”—a web site loaded with facts about the types of cells used and their potential to treat various diseases. The site also lists questions patients should ask when investigating treatments. Ultimately, it will detail the practices of specific clinics, and state whether they meet the ISSCR’s standards for patient protection.
The web initiative emerged from a cautionary report by the ISSCR Task Force on Unproven Stem Cell Therapies, which stressed the safety risks of experimental stem cell therapies performed outside of properly designed clinical trials. “Researchers have made great advances toward the clinical application of stem cells, however, for many diseases we haven’t yet put all the pieces of the puzzle in place,” said Lyall, who was an author on the report. “This report and web initiative is a reminder of the real risks that exist for those who choose to participate in what is still considered experimental medicine, and the ethical safeguards, regulatory oversight, and scientific evidence patients have a right to expect.”
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