Patients suffering from Multiple Sclerosis (MS), a debilitating disease affecting the central nervous system, held rallies at a number of legislative buildings across the country on May 5th to voice their concerns about access to a new experimental treatment.
Italian vascular surgeon Dr. Paolo Zamboni believes there is a link between MS and what he has termed chronic cerebrospinal venous insufficiency (CCVSI) whereby the narrowing and blockage of neck veins results in restricted blood flow in the brain. His “liberation” procedure uses balloon angioplasty to open obstructed veins in the neck. Many MS patients have experienced improvements following the procedure.
There are only a few private facilities in Canada where patients can access testing for CCVSI including False Creek Healthcare Centre in Vancouver, British Columbia and Barrie Vascular Imaging in Barrie, Ontario. A recent news article reports that surgeons in Canada performed the “liberation” procedure on a handful of patients before its prohibition.
The medical community remains divided on the treatment with many doctors cautioning patients to wait until more research is done. Meanwhile, the race for research dollars is now on with hospital foundations in Saskatchewan and British Columbia each claiming that their province has the highest rate of MS in Canada. However, many patients are choosing to leave the country to seek treatment rather than waiting for our publicly-funded system in which bureaucrats decide the tests and treatments to be made available under Canadian medicare. Those hoping to undergo the procedure south of the border will need to travel much farther now that hospital legal teams are banning doctors from performing it in the United States.
One can only imagine the immense pressures now facing Dr. Zamboni who has effectively stepped outside the box and embraced one of the most powerful tools available today for advancing his medical research and treatment – patient engagement. Thanks to the Internet, patients are becoming informed and sharing their experiences. The MS patient-led rallies are a sign of just how effective the Internet can be in helping to organize and unite the patient voice.
The “patient empowerment” tsunami that patients have been waiting for and governments have been dreading seems to have hit Canada on May 5th and it may be exactly what is needed for Canadians seeking “liberation”.