Chronic Cerebrospinal Venous Insufficiency


Senator Statement Senator Jane Cordy December 9th, 2014

Hon. Jane Cordy: Honourable senators, five years ago, the lives of many Canadians living with multiple sclerosis changed dramatically. It was on November 21, 2009, that the CBC investigative journalism program "W5" aired a program on Dr. Paolo Zamboni and the research that he was doing on chronic cerebrospinal venous insufficiency in MS patients. His work provided hope for people worldwide living with MS and showed real promise with a procedure that could drastically improve quality of life and provide relief from the devastating symptoms of multiple sclerosis.

Unfortunately, after five years, Canadians who want the procedure still have to travel outside of Canada to have it done. Canadians without the financial resources are provided with limited choices of health care options for MS and CCSVI. I know of Canadians who have remortgaged their homes or borrowed money to travel outside of Canada for treatment.

Private members' bills were introduced in the Senate and in the other place that would have provided a national strategy for MS, clinical trials for MS and CCSVI, and collection of data from those Canadians who have travelled outside the country for treatment. These bills were defeated by the government majority in both the Senate and the other place.

Many people have dedicated themselves to helping Canadians with MS in their struggle for access to real health care options when it comes to treating multiple sclerosis. Linda Hume-Sastre is the president of CCSVI Ontario. She has been the driving force when it comes to promoting education, awareness and advocacy of CCSVI treatments for Canadians living with MS in Ontario.

Christopher Alkenbrack is a Nova Scotian who was diagnosed with MS in 1992. In 2010, Christopher was one of the first Canadians to travel abroad to undergo Dr. Zamboni's CCSVI treatment procedure. His experience with the treatment was positive, and he shares his experience with Canadians as an advocate for many Canadians with MS.

Dr. Bill Code is remarkable. He was diagnosed with MS when he was 42 and was confined to a wheelchair. After undergoing the venoplasty procedure and making lifestyle changes in diet and fitness, he now continues to practise medicine.

Dr. Sandy McDonald was willing to explore options of treatment for Canadians with MS. Dr. Bernhard Juurlink, Dr. Mark Haacke, Dr. Robert Zivadinov, to name just a few, are other prominent doctors who continue to do research on CCSVI and MS. Research is finding similarities between Parkinson's, chronic fatigue, dementia and Lyme disease. In fact, our Social Affairs Committee heard from witnesses on Bill C-442, An Act respecting a Federal Framework on Lyme Disease, stating the frequent misdiagnosis of Lyme disease for many Canadians, mistaking it for MS. As Dr. Robert Zivadinov has stated: "CCSVI is definitely bigger than MS."

Honourable senators, we know that MS impacts almost 100,000 Canadians. Five years have passed, and we continue to wait for the science and new evidence. Canadians are just being told to wait and wait and wait. It is discouraging to learn that Canada still doesn't collect data from those who have had the procedure done in order to record results.

It is unfortunate that those with MS must continue to fight the status quo, the MS societies, the pharmaceutical industry and even some neurologists. Those Canadians who challenge the status quo to make things better for those with MS are my heroes. They're fighting hard for future generations of Canadians.

I would like to quote Christopher Alkenbrack, who stated:

We must not give up hope. We must continue to march forward. We must believe that we will be the last generation of people ever to hear those words that resound in our ears as a life-long sentence of uncertainty and despair, the words that I heard on that day back in April of 1992 - "Mr. Alkenbrack, you have Multiple Sclerosis".

Through further research into the area of chronic cerebrospinal venous insufficiency, we will indeed end MS.

Honourable senators, this is Canada. I believe we can do better.