COLUMBUS – Increasingly, patients with incurable diseases such as amyotrophic lateral sclerosis (ALS, or Lou Gehrig’s disease) or multiple sclerosis (MS) are asking their neurologists about unproven stem cell treatments they’ve seen on the Internet or social media. These unregulated treatments often require patients to travel overseas or across the United States, and patients are seeking advice or permission from their neurologists to participate in this stem cell tourism in the hope of a cure.

In a paper published this week in JAMA Neurology, a group of neurologists at The Ohio State University Wexner Medical Center propose standards for counseling and educating neurological patients about “stem cell tourism.” They also encourage neurologists and medical societies to counsel patients against participating in unfounded stem cell therapies that may put the patients at risk of serious physical and financial harm.

“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,” said Dr. Jaime Imitola, a neurologist who specializes in treating patients with MS at Ohio State’s Wexner Medical Center.

“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,” said Imitola, who is corresponding author of the paper and a member of Ohio State’s Neurological Institute. “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.”

The researchers call for concerted efforts by the FDA, state medical broads and specialty licensing boards to investigate physicians offering unproven stem cell treatment, and suggest working with the media to help educate the public about the potential dangers of stem cell tourism.

Other Ohio State researchers involved in this publication are Michelle Bowman, Michael Racke and John Kissel.