Madam Speaker, Canadians living with multiple sclerosis are fighting their disease and fighting for clinical trials for the new liberation procedure for chronic cerebrospinal venous insufficiency, or CCSVI.
We had a parliamentary subcommittee on neurological disease that heard four hours of testimony from the leading researchers in the world on CCSVI, including Dr. Zamboni, who pioneered the liberation procedure, and Dr. Simka, who has undertaken the most procedures globally. These researchers indicated that, according to their initial studies, both the diagnosis and treatment of CCSVI were deemed to be safe and have resulted in significant improvements in the quality of life of many MS patients.
Instead of listening to the leading researchers internationally, the government chose to accept the recommendations of a panel, held behind closed doors with no minutes. Why were only nine papers reviewed? Why were no leading experts called for their expertise? Where was the scientific rigour in making sure panellists were not biased?
At the end of July, I travelled to New York to learn the latest science at an international symposium for CCSVI. Researchers from Bulgaria, Italy, Kuwait and the United States were all presenting similar results, namely that 87% to 90% of MS patients show venous abnormality. Of the 400 cases reviewed by Canada's Dr. McDonald, 90% show a venous problem.
We need evidence-based medicine in Canada. The question I have is why have we not been collecting it? There are two ways to collect evidence and we have been calling for both: clinical trials and a registry. When I spoke to a high-ranking official in July, I was told a registry was not possible because “we have no idea what is being done overseas”. I explained that it was not exactly true. For example, in Poland, each patient is seen by a neurologist and has an MRV, a Doppler scan, and an eye test. Before-and-after liberation photos are taken, and during the actual procedure there is video. Finally, a long, complicated form is filled out, including EDSS scores.
It seems to me as a scientist that there is data to be collected.
I would like to identify some incongruities. Over the last four decades, only 7% to 20% of surgeries performed in hospitals have ever been double-blind tested, yet detractors of the liberation theory are insisting on sham surgeries in some of society's most vulnerable.
Often in medicine, when a treatment shows promise, it is fast-tracked. A recent example is a new device that can suck out stroke-causing blood clots. Very quickly, 27 patients across 10 hospitals were rescued from strokes by the device.
Over 1,500 liberation procedures have been performed worldwide, yet we are told there is not enough evidence for clinical trials in Canada.
As an example from MS, a few years ago a drug that was known to cause a fatal brain infection was fast-tracked, and 68 people have acquired the infection and 14 have died. Yet there is the hesitation to undertake clinical trials for angioplasty, a procedure undertaken daily in hospitals across this country.
I am in touch with over 1,000 MS patients across this country. I have a list of over 150 people who have been liberated. One toddler said, “My mommy's not broken anymore”. One woman who was a quadriplegic is now writing.
I am also in contact with physicians who themselves have been liberated. As one explained, “My province allowed me to practise for decades, but after liberation, I cannot even get a hearing”. He questions, “If we had collected the evidence in a registry for the last many months, would we still be calling this anecdotal stories?”