Medical Tourism for Chronic Cerebrospinal Venous Insufficiency (CCSVI) Treatment in Multiple Sclerosis

Background: Medical tourism involves patient travel across international borders to obtain medical care. Because procedures for chronic cerebrospinal venous insufficiency (CCSVI) are not approved in Canada, many people with Multiple Sclerosis (MS) have travelled out of country and paid out-of-pocket to have these interventions. 

Objectives: Among persons with MS who obtained venous angioplasty with or without stenting for CCSVI, we aimed to describe the factors that influenced the choice of the treating facility and to examine differences in clinical practices and outcomes by the country in which treatment was performed. 

Methods: The Alberta Multiple Sclerosis Initiative (TAMSI) is a longitudinal observational study that uses online questionnaires to collect patient-reported information about the safety, experiences, and outcomes following CCSVI treatment. In total, 866 subjects enrolled between July 2011 and June 2013, of whom 124 travelled abroad to obtain CCSVI treatment, with one patient going twice.

Results: Patients traveled to the United States (44.0%), Mexico (20.8%), Costa Rica (11.2%), and Poland (10.4%). A few patients also traveled to Bulgaria, Germany, India, Jordan and the United Kingdom (13.6%). Most patients learned about the treating facility on the internet (56.0%) or from a friend or relative (50.4%); and chose the facility based on their impression of the reputation of the physicians (66.4%), recommendations from an acquaintance (44.8%) or travel distance (41.6%). The specialty of the physician who performed the treatment, placement of venous stents in addition to angioplasty, the costs of treatment and travel, and any follow-up treatments or tests were each strongly associated with the country of the treating facility (p<0.0001). There was also a moderate relationship with the number of veins treated (p=0.04). Regardless of the country in which treatment was performed, most patients felt that the treatment was successful (79.1%) and that it was as easy to tolerate as expected (90.4%). 

Conclusions: Because CCSVI treatment is an unproven experimental therapy there is currently no standardized protocol for these procedures. As expected, there was considerable variability in the clinical practices of facilities treating MS patients who travelled abroad for CCSVI interventions.