Madam Speaker, MS patients are deteriorating and their frustration is growing, further hurting their disease. There is only one thing worse than having devastating MS, and that is knowing the liberation procedure might improve quality of life and being denied access to trials.
The parliamentary Subcommittee on Neurological Disease had four meetings with the world CCSVI experts, including Dr. Zamboni, who said the diagnosis and treatment of CCSVI were safe, had resulted in significant improvements in the qualify of life of many MS patients and that clinical trials were needed.
While I personally met, spoke with and reviewed data with leading CCSVI researchers internationally, including Dr. McDonald, the only Canadian who has been trained by Dr. Zamboni and has performed the procedure in Canada, and Dr. Haacke, a world leader in diagnostic imaging, the government actually refused to listen to the subcommittee experts. Our committee heard from the best and brightest.
Is this a new trend, as people at the August 26 meeting also refused to listen to experts, supposedly for fear of biasing the sample? Yet two witnesses had previously spoken vehemently against the procedure.
There was important pertinent information that the August 26 reviewers missed, possibly 25 different venous abnormalities in the neck and chest, including missing jugular veins, truncated jugular veins at the clavicle, in the middle of the neck, spider veins, stenosed veins, string-like veins, imaging of iron deposits in the brain, video of reflux in the deep cerebral veins, the internal jugular veins and flow or lack thereof in the internal jugular veins. MS patients with primary and secondary progressive disease can also experience an improvement in brain fog, circulation, fatigue and motor skills.
Patients do not want to wait possibly two more years for the results of seven correlation studies. MS patients have done their homework and know that researchers from Bulgaria, Canada, Italy, Kuwait, Poland and the United States are all presenting similar results, namely, that 87% to 97% of MS patients show venous abnormality.
Patients want clinical trials. MS patients know 3,000 procedures have been done worldwide and understand the hypocrisy that after just 27 procedures with a stroke sucking vacuum, the vacuum was deemed safe enough to implement in 10 Canadian hospitals.
The government should know that its August 26 ruling, based on the narrowest possible review of science, is already forcing desperate MS patients overseas. What assurances do Canadians have that they are going to a reputable clinic with adequately-trained people who have undertaken a sufficient number of procedures and what follow up is available to Canadians, as many must often return overseas?
The government should also be aware that some doctors are refusing to treat their patients upon their return. I am hearing from patients across the country that their appointments are being cancelled and not re-booked, liver tests for MS drugs are being cancelled and several have been threatened with, “No doctor will treat you should you develop a blood clot”. This is illegal and unethical.
I implore the government to do its job, which is undertake what it failed to do this summer. Science can only progress through reviewing all of the available evidence, from meeting and speaking with those engaged in the science and treatment, to asking if they are willing to share their expertise and results, to reviewing the published material, to doing site visits to labs and operating theatres and to come to a conclusion based on evidence, all of the evidence. The longer the delay, more will sicken and die.