#ACTRIMS2019 – Stem Cell Tourism Poses Threat of Complications for Patients, First US Neurologist Survey Says

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by Jonathan Grinstein |

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Academic neurologists are seeing many patients with neurological diseases interested in or receiving unapproved stem cell-based treatments, sometimes with negative health and/or financial consequences, according to a U.S. survey of neurologists.

The data were reported by Wijdan Rai, MD, from Ohio State University in a poster titled “Complications of Stem Cell Tourism in Multiple Sclerosis & Other Neurological Diseases: Results from First Nationwide Survey of Academic Neurologists” on March 1 at the 4th Annual Americas Committee for Treatment and Research in Multiple Sclerosis (ACTRIMS) Forum in Dallas, Texas.

“Stem cell tourism” is a blanket term used to describe clinics (in the U.S. or abroad) that offer unproven cell-based interventions to patients with debilitating diseases, such as Parkinson’s disease and amyotrophic lateral sclerosis. The phenomenon of stem cell tourism is rising among patients with neurological diseases, including multiple sclerosis (MS).

According to Rai, “an alarming number of stem cell clinics have been accessible to patients, and the need for education has been identified.”

Academic neurologists often see patients with complications due to stem cell tourism. But, “the experiences and challenges that neurologists face in the outpatient practices is unknown,” Rai said.

Understanding the experiences of neurologists with patients of stem cell tourism is critical to develop a strategy to educate patients about it. In fact, “a fair amount of neurologists had said that they would find really helpful to have some sort of educational tool, because they were not prepared to answer certain questions” about stem cell tourism and its complications, said Rai.

To fill this knowledge gap, researchers from The Ohio State University developed a 25-question survey focused on academic neurologists in the U.S. and their experiences with and attitudes about stem cell tourism, and associated patient-reported complications. The survey was distributed using a web tool called Synapse to members of the American Academy of Neurology.

Academic neurologists were targeted because they have specialized and informed knowledge about experimental cell-based therapies. In total, 204 across the U.S. completed the survey, and were specialized in a range of neurological fields, with about one-third of them specializing in MS.

The survey results showed that nine out of 10 neurologists (91%) had been asked about stem cell treatments by patients or family members/caregivers — 37% of these patients had an MS diagnosis.

About two out of three respondents (65%) had a patient who had received “stem cell therapies.”

Patients most often wanted general information about stem cell therapies from their neurologists. Half of the patients requested permission to undergo a stem cell procedure, and 31% approached their neurologist after the procedure.

Among patients undergoing stem cell treatment, 33% reported the treatment was performed in the U.S., 22% reported going abroad, and 37% reported procedures both in the U.S. and abroad. The procedures abroad were performed in China, Germany, the Bahamas, Mexico, Russia, and Costa Rica.

Rai said “75% of the physicians indicated that no patient experienced complications” from these unapproved stem-cell-based treatments.

However, one in four (25%) reported seeing patients who experienced complications, such as infections, MS deterioration and relapse, stroke, meningoencephalitis, sepsis, tumors, hepatitis C, seizures, or spinal cord injury.

At least three neurologists had patients who died from unapproved stem cell procedures.

These results are sad, Rai told MS News Today, because “there is actually legit, approved research happening on stem cell therapy, and their complication rate is very low. So it’s tough to see that it can be done really well, but when it’s done in a sort of unregulated or unapproved sort of fashion, you can not only have a lot of these kind of complications, but also have a huge financial burden.”

According to the researcher, “patients reported significant financial burden with no benefit,” with treatments costing $20,000 to $25,000, up to $80,000 per procedure.

Stem cell tourism is an “emerging public health threat,” and the results “demonstrate an alarming number of unreported complications and negative impact to MS patients,” Rai said.

Therefore, the team believes in “a multipronged approach to improve the education of MS patients to prevent exploitation and engaging multiple stakeholders in the field, including MS academic societies, licensing boards, and legislative bodies.”

Specifically, the researchers suggested the creation of evidence-based education for neurologists and patients, including “resources that neurologists can use when discussing stem cell interventions with patients, and videos on proper counseling during these visits,” Rai noted.

The team also advocated for the “creation of a publicly available national registry where ‘stem cell tourism’ complications must be reported,” and the development of guidelines “on how to care for patients who have undergone experimental stem cell procedures with tumor formation,” Rai said.

The researcher said that as a physician, “you have to respect patient’s autonomy, and at the end of the day it is their decision, but we also have to keep in mind … that we (physicians) have to do what is best for them and communicate that to (our) patients.”

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