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People who have suffered debilitating brain or spinal cord damage, or have been diagnosed with progressive neurological disease, are often frustrated by the lack of treatments available to help them. That frustration can make them easy targets for clinics that inject patients with “stem cells”. But most of these clinics are operating outside of the Food and Drug Administration’s jurisdiction, and the treatments they offer are unproven. And pricey.
“It’s an unethical industry. They use fancy websites promising cures left and right, but which are nothing of the sort. They steal your money but give nothing in return,” says Jaime Imitola, senior author of the paper and director of the Comprehensive Multiple Sclerosis Center at UConn Health.
Patients often pay $25,000 to $50,000 in cash for procedures that claim to cure everything from multiple sclerosis to paralysis, but have no evidence to back them up. The clinics, which can operate in the US but are more commonly found in Mexico, China, Russia and other countries with looser health regulations, entice patients to fly out for a week or two of spa-like treatment, physical therapy and injections of stem cells supposedly designed to cure multiple sclerosis, ALS, paralysis, or whatever other neurological impairment the person suffers from. The physical therapy often makes the patient feel better for a week or two. But sadly, there are no treatments that can reliably improve most of these diseases, and definitely none using stem cells. And anecdotal stories have begun popping up of patients who have had these stem cell procedures and then developed horrifying side effects, from hepatitis to nerve pain to bizarre spinal cord tumors.
In an effort to better understand the impact of this stem cell tourism, as the field calls it, a team of researchers lead by UConn Health conducted a nationwide survey of academic neurologists’ experiences in stem cell tourism complications. The survey also investigated the level of physician preparation to counsel and educate patients.