good morning
-it is a tremendous honour and pleasure to be here with you this morning, particularly because it is at the request of Dr. Smika, for whom I have enormous respect
-I have been asked here to discuss the history, politics, and science of the fight for diagnosis and treatment of CCSVI in Canada
-but before I begin, let me share a little of my own history
-I am a former health professor, now turned Member of Parliament
-my research area was pandemic influenza
-many years ago, I led a team of world-leading scientists 500 miles from the North Pole to exhume six bodies from the permafrost to hunt for the cause of the 1918 Spanish flu virus...I hoped the frozen ground would preserve the body and the virus so that we could make a better influenza vaccine, and test our drugs against history’s deadliest disease
-my ten-year study was the story of the 1918 Spanish flu, the story of the search, and about being prepared for the next influenza pandemic...but it was also the story of the darker side of science... double-dealing and power games among the lords of science, and how scientific behaviour deteriorates when stakes are perceived as high
-I wrote a book based on my experiences because the world depends on scientific cooperation to protect us from new threats of infectious diseases and bioterrorism...but also to find new cures and treatments for diseases, such as multiple sclerosis
-the other thing you should know....I have a cousin with MS...strikingly beautiful, a former model
-she went from perfect—active, laughing, smiling to being a quadriplegic in a few short years...while our family watched in horror
-MS separated my cousin from her life...from her work, from society, and then from her family... as speaking became increasingly difficult
-my family’s experience with MS is that at first you read everything you can, hoping to find some new research, somewhere in the world that can help stop the progression, reverse the disease
-but quickly you learn there is no help, and no hope
-years into my cousin’s decline, a lead
-we were told quietly on leaving an MS clinic, ‘go to Italy’, for what was to become the liberation procedure, ‘and then go to Israel for stem cells’
-a year-and-a-half later, in November, 2009 a television journalist aired Dr. Zamboni’s research...and like thousands and thousands of Canadian families who cope with MS, we watched
-interesting theory...but I am a scientist, I needed more information
-I would contact the experts, I would read the literature, I would go to any conferences...I needed the evidence
-surprisingly and almost immediately, the MS Societies in Canada and the US were reticent to support Zamboni's theories...what evidence had they gathered, I wondered
-I want you to know that I came to Parliament Hill to fight for neurological disease
-in the 1970’s and ‘80’s, there was a push to protect heart and lung health
-where was the focus on the brain...particularly with an aging population, and with what Alzheimer’s disease would mean alone in Canada...the human cost--from one case diagnosed every five minutes to one every two minutes in 30 years ... and the economic cost: $153 billion per year in three decades
-I therefore received all-party support to create the first-ever neurological sub-committee of the House of Commons Health Committee
-in February, 2010, medical practitioners had the chance to hear the international experts in CCSVI in Canada...Dr. Zamboni, Dr. Simka, and the list went on
-I had to fight my way in, as I am not a physician...interestingly, on the elevator, I met a cardiac-thoracic surgeon from northern Ontario, Dr. Sandy McDonald, who was interested in the new theory
-I have to admit, I was sceptical, trepidatious of Dr. Zamboni’s theory...I wanted evidence
-the experts delivered...imaging, flow diagrams, MRIs...the more I listened, the more I was impressed
-Canada requires evidence-based medicine...this means that in order to undertake diagnosis and treatment of CCSVI in Canada, clinical trials must be undertaken
-and so based on the evidence presented at the first conference, I decided to bring the fight for clinical trials to Parliament
-unfortunately, a highly polarized debate regarding whether or not CCSVI causes MS dominated societal debate--rather than the fundamental question, regarding whether or not MS patients improve following the liberation procedure
-on the one side, there were the neurologists...
-"I think there are going to be millions of dollars spent now to follow a hoax.... If I thought for one instant there was substance to this, I'd be all over it”
-on the other side, there were the people living with MS
-working with them has been one of the most humbling experiences of my life...courageous, tenacious...they should never have had to battle their disease and the system
-in May, 2010, my colleague and I wrote an open letter to the Health Minister asking for clinical trials for CCSVI and a registry in Canada ...there was no response
-I then asked for an emergency debate in Parliament...a four-hour take-note debate on CCSVI was granted in June
-the subcommittee I created held four meetings on CCSVI...we heard from Dr. Zamboni, Dr. Simka, Dr. Haacke, and the cardio-thoracic surgeon I met in the elevator, Dr. Sandy McDonald...the only Canadian to be trained by Dr. Zamboni and to have undertaken the procedure in Canada
-all said clinical trials were needed...the Government did not budge
-in the summer, when I questioned a top-ranking health official, why we could not have a registry...he explained because we don’t know what is being done overseas...I said that that was not exactly true...let me take Poland for example...each MS patient is seen by a neurologist, has a doppler, an MRV, an eye test, pictures before and after the procedure, and video of the actual procedure...I explained you could actually see the blood refluxing...I was ignored
-eventually, the Government put in place a political process to decide whether or not to go ahead with clinical trials
-in August, the Canadian Institutes of Health Research, in collaboration with the Multiple Sclerosis Society of Canada (MSSC), convened a ‘meeting of top researchers’, ’with a special emphasis on neurovascular issues including the recently proposed condition called CCSVI’
-sadly, it was an expert group with no experts in the imaging/treatment of CCSVI
-leaders, such as Dr. Sandy McDonald, were not consulted ...moreover, there was no inclusion of international experts in CCSVI/liberation treatment
-no data were presented from international scientific conferences, no site visits were made to labs and operating theatres ... just blind acceptance of a handful of studies, including two which had been accepted for publication in an astounding six weeks
-after the secret meeting, we were told, incredulously, that CCSVI/liberation experts were not included for fear of biasing the discussion ... surely, disregarding experts is a dangerous precedent
-yet researchers, who had vehemently spoken out against the liberation procedure, were included in the group
-over the past year, I am personally in touch with over 1,000 MS patients across Canada...of those, over 270 have now been treated...I receive three and four personal notes each week and innumerable phone calls detailing their progress...many are PPMS and SPMS patients
-their changes: improved circulation...changes in the color and temperature in their face, hands, and feet...reduction in the both the searing nerve pain and the constrictive pain ...like someone unwrapped a tourniquet from some part of their body...reduction in brain fuzziness...improvements in motor function, vision and hearing
-thought you might like to hear a few:
‘I did not wait for Canada and had my procedure done 3 months ago today in Albany, New York. It took me 5 weeks to feel better - new blood supply in an old body - but I am now reaping new rewards on an almost daily basis. Some of my improvements are: better 3D vision, things no longer look flat, less glare from the sun or snow, amazing night vision. My left foot woke up, no longer numb. My balance has improved on my left side. I think however the greatest gift has been sleep. Now I can sleep deeper, wake up and go to work (part time) and I do not need to nap in the day. I am really enjoying these "placebo" effects!!!!’
‘I'm busting at the seams to let everyone know, I have just returned from where I had the CCSVI procedure (venoplasty) done by Dr. ...I spent a lot of time researching this and decided I wanted to go to one of the best out there, it took two hours I had five balloons 2 ...the benefits are phenomenal, my numbness on left side disappeared immediately, vision has improved tenfold, I will now be able to read books again ( used to be one of my favourite pasttimes), drop foot gone, fatigue gone. I walked the furthest I have walked in over two years 2 days after the procedure, balance is greatly improved but will work on this with physio as well as muscle mass repair. ... benefits are PRICELESS:-)’
-I have asked hundreds of written questions of the Government, attended four international conferences on CCSVI...no Government official has ever attended one...and I take every opportunity to speak on CCSVI in the House...thankfully, Canada’s extraordinary MS patients send me petition after petition so I can deliver these in Parliament
-we now have a new ‘Scientific Expert Working Group’
-sadly, it has the same flaws as the initial group—namely, no experts, no experience, and many undeclared conflicts of interests
-the new group is to analyze interim and final results from seven Canadian and US MS Societies-funded studies, for which we already have answers
-namely, that Bulgaria, Canada, Italy, Kuwait, Poland, and the United States report that 87 to 90% of MS patients show one or more venous abnormalities (by MRI/ultrasound by a trained operator), and 97% when angiography is done
-the political process has failed Canadian patients
-Canadian MS patients deserve science...they deserve evidence-based medical practices
-sadly MS patients can’t have evidence-based practices if their Government refuses to collect any evidence...either through clinical trials or a registry
-Canadian patients, who have been travelling overseas since January 2010, have not had their results tracked ...one Canadian neurologist, who had had the liberation procedure, said to me, ‘if we had collected the evidence in a registry for the last many months, would we still be calling these anecdotal stories?’
-going forward, I would suggest the following action plan:
(1) to ensure proper health care is not refused to a patient on the ground that the patient has chosen to seek, or has obtained, the liberation procedure outside Canada
(2) to establish an Advisory Panel, composed of experts who have been actively engaged in imaging or treating patients with CCSVI, and patient representatives, who have been treated, to advise on the liberation procedure
(3) to provide funding to undertake clinical trials for the liberation procedure in multiple centres across Canada
(4) to track patients who have received the liberation therapy, whether inside or outside Canada
-clinical trials must include diagnosis and treatment standards—including ultrasound, and MRI to identify any abnormality, and other MRI techniques, including flow quantification, iron content, and venous damage
-those undertaking the liberation procedure must be sufficiently trained and practised to ensure the best results for the patient
-patients must then be followed to ensure the accumulation of knowledge regarding the efficiency of the treatment, its effect on quality of life of the patient, the duration of the effect, the need for any repeat treatment and the appearance of any side effects or risks
-I was thrilled that Drs Haccke, Hubbard and MacDonald joined me on Parliament Hill three weeks ago...they came at their own cost to speak to Members of Parliament and Senators to ask for follow-up care, clinical trials and a registry
-we have since asked the Minister of Finance to fund clinical trials and a registry in the next budget
-finally, MS patients want an investigation into how this file was handled so badly:
-how special interests co-opted science
-how an organization that was supposed to steadfastly advocate for MS patients flip-flopped on its position
-how process was used not to do science
-how conflicts of interests went undeclared
-how a pioneering surgeon had to risk his reputation
-how MS patients were forced to fight the system
-how the Minister repeatedly failed to advocate on behalf of suffering Canadians, particularly with regard to follow-up care--especially when we began raising the issue in July with officials?
-and ultimately, who was responsible for repeatedly failing to take leadership, and who must be held accountable for the abject abdication of responsibility?
-in closing, I want to thank the doctors for your science, your compassion, your courage to be pioneers...I know how hard it is to do cutting-edge research, to come from another discipline, and find a new way of exploring—I was an outsider, who thought of a new way to look for answers to Spanish flu...I know how bruising it can be ...emotionally, financially, and professionally...I spent $85,000.00 of my own money to undertake the Spitsbergen expedition, money I would never re-coup
-thank you for standing strong in the face of adversity—for doing science, and hoping that eventually evidence over egos, politics, and the various Government lobbies will prevail
-and my last words to all those living with MS...thank you for your courage, your tireless efforts to help those not yet treated ... you inspire me every day
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