Neurologists warn against potentially dangerous ‘stem cell tourism’

Neurologists at The Ohio State University are calling on doctors to educate their patients about scientifically unproven stem cell treatments that they say more Americans with incurable diseases are finding online and traveling overseas or across the country for.

In a paper published Monday in the journal JAMA Neurology, the researchers write that “stem cell tourism” is a growing problem among patients with medical conditions like multiple sclerosis (MS) and Lou Gehrig’s disease, also called amyotrophic lateral sclerosis, or ALS, who are willing to try potentially harmful therapy in hopes of curing their disease. Stem cell tourism has become increasingly popular over the past decade for patients with other diseases, like cancer, as well.

“As neurologists, we can no longer ignore this issue, especially since its advertisements are frequently directed at our patients via social media and the Internet,” study author Dr. Jaime Imitola, a neurologist who specializes in treating patients with MS at Ohio State’s Wexner Medical Center, said in a news release.

A Harvard Stem Cell Institute (HCSI) article published online in spring 2013 noted that stem cell tourism abroad has occurred primarily in China, India, the Caribbean, Latin America and some parts of the former Soviet Union.

Stem cells can form various types of cells in the body, which makes this type of therapy promising but also risky.

“The evidence for therapeutic use of stem cells is very limited, except for bone marrow stem cells, but patients all over the world are convinced stem cells will cure their disease," Alta Charo, a law and bioethics professor at the University of Wisconsin-Madison professor, who is studying stem cell tourism, and wasn’t involved in the current study, said in 2014.

Stem cell tourism is different from medical tourism, a blanket term that has pros and cons yet can refer to patients traveling to receive scientifically proven therapies, Timothy A. Caulfield, LL.M, the Canada Research chair in health, law, and policy at the University of Alberta, said during a 2013 panel organized by the HSCI. Caulfield, who was not involved in the Ohio State study, said the trend of stem cell tourism “hurts the legitimacy of the entire field” of stem cell therapy and research.

In their new paper, Imitola and his colleagues urged the Food and Drug Administration (FDA), state medical boards and speciality licensing boards to collaborate with media to warn the public against American neurologists who encourage potentially harmful stem cell tourism, and to help educate the public about its risks.

“We must help educate our patients not only in the clinic setting, but also by working with patient advocacy groups such as the National Multiple Sclerosis Society and the ALS Association,” Imitola, who is also a member of Ohio State’s Neurological Institute, said in the release. “We all want to end the plight of our patients, and the challenges brought about by stem cell tourism are an opportunity for medical societies such as the American Academy of Neurology and the American Neurological Association to advocate against unsafe and unproven practices, and to end the exploitation of therapeutic hope.”