New report on Multiple Sclerosis tourism by team at Simon Fraser University

‘Faith, hope and trust in medical tourism’ looks at Canadian MS patients who went abroad to receive CCSVI treatment that has been refused government funding in Canada. A new report by the medical tourism unit at Simon Fraser University, Canada.

A report by the medical tourism unit at Simon Fraser University, ‘Faith, hope and trust in medical tourism’ looks at Canadian MS patients who went abroad for treatment.

Multiple sclerosis is a disorder of the central nervous system with undetermined causes. Canada has one of the highest incidences of MS in the world, affecting thousands of Canadians. While there is no cure for MS, treatment for chronic cerebrospinal venous insufficiency (CCSVI) has been performed as an unproven intervention for MS, after researchers in 2009 suggested an association between CCSVI and MS.

No control trials have provided evidence for the efficacy of CCSVI treatment for the relief of MS symptoms, and recent studies have found no connection between CCSVI and MS.

The Canadian government refuses to fund access to this intervention, effectively blocking domestic access to CCSVI. So some Canadians with MS travel abroad to access this care, circumventing restrictions placed by the domestic system.

The research was with Canadians who had gone abroad for CCSVI treatment:

• Patients had a loss of faith in the Canadian health system, by virtue of their frustrations with the domestic health care providers and administrators who would not accommodate their desires to access unproven interventions at home. While other Canadians were able to access vascular treatments similar to those used for CCSVI for conditions not related to MS, they felt their diagnosis with MS marked them as different from the rest of the population and subjected them to inferior medical treatment. Frustration and loss of faith was primarily directed towards neurologists, who serve as gatekeepers to specialized treatment for MS.
• They nurtured hope that access to CCSVI treatment abroad could eliminate or lessen symptoms of MS, and was often the only option or last resort, even if success was far from guaranteed. Staying in Canada was seen as accepting permanent loss of function from MS, and taking a chance on CCSVI was considered a rational choice. Cautionary advice from doctors meant that patients largely did not believe that they would be cured of MS as a result of undergoing CCSVI treatment abroad.
• Patients trusted clinics and doctors in the destination countries. Often the professionalism and credentials of overseas doctors was an important element in building trust in the care they would receive. Recommendations of fellow MS sufferers gave confidence in overseas doctors.