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Kirsty Duncan MP. YOUR ACCOMPLISHMENTS -from just two of us fighting for CCSVI on Parliament Hill -CCSVI debated at the Sub-Committee on Neurological.

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Presentation on theme: "Kirsty Duncan MP. YOUR ACCOMPLISHMENTS -from just two of us fighting for CCSVI on Parliament Hill -CCSVI debated at the Sub-Committee on Neurological."— Presentation transcript:

1 Kirsty Duncan MP

2 YOUR ACCOMPLISHMENTS -from just two of us fighting for CCSVI on Parliament Hill -CCSVI debated at the Sub-Committee on Neurological Diseases -take-note debate on CCSVI in the House of Commons -multiple breakfasts for all MPs and Senators -over __ petitions presented in the House of Commons -reversal of Government’s position, and a commitment to both clinical trials and a registry -Bill in the House -Bill in the Senate via our champion and friend, Senator Jane Cordy -both Bills debated

3 HOW DO WE KEEP FIGHTING THE GOOD FIGHT? -for science and evidence-based medicine? -for a Minister of Health who actually listens? -for improvements in quality of life? We need to look at some of the lessons of the past years.

4 LESSONS -the fight for CCSVI has never been about science, evidence, and improving the quality of life for Canadians living with MS, but rather it has been about politics and stonewalling

5 IF THE FIGHT WAS ABOUT EVIDENCE… -the decision to kill Senator Cordy’s Bill would not have taken place in February 2012, a full eight months before Senate hearings on the Bill took place -Conservative Senators would have heard from Canadians living with MS, just as they would have heard from any other group of individuals -can anyone imagine a committee on cancer treatment not speaking to cancer sufferers, or a study group on poverty refusing to hear from the poor? Can anyone contemplate a committee rejecting the advice of the most practised CCSVI physician in Canada, the Canadian with the only published, peer-reviewed papers on the subject and ethics-approved research?

6 HAD CANADIANS WITH MS BEEN ALLOWED TO TESTIFY -begging their doctors for information on CCSVI -being denied the opportunity to have an ultrasound or an MRI -mortgaging their homes or using their children’s education funds to pay for treatment -hiring a private medical ambulance to fly a relative overseas because no charter airline would take someone so sick -returning to Canada only to find out their medical appointments had been cancelled and there was absolutely no follow-up care available

7 HAD CANADIANS WITH MS BEEN ALLOWED TO TESTIFY -changes in the color and temperature in their face, hands, and feet -improved circulation -reduction in searing nerve pain and constrictive pain -reduction in brain fuzziness -and improvements in motor function, vision and hearing “I’m busting at the seams to let everyone know … the benefits are phenomenal, my numbness on left side disappeared immediately, vision has improved tenfold … drop foot gone, fatigue gone. I walked the furthest I have walked in over two years 2 days after the procedure … benefits are PRICELESS:-).”

8 IF THE FIGHT WAS ABOUT EVIDENCE… -Minister of Health (MOH) would have met with CCSVI groups across the country, and with Canadians who had been treated for CCSVI to learn their experience -MOH would have included experts in CCSVI in her Scientific Expert Working Group -MOH would not have organized briefings and letters to kill my Bill -the Government and MS Society would not have shared talking points -the MOHs would provide real answers to my questions regarding clinical trials, and they would actually give the same answer for the same question -Canadian doctors would not have threatened practising physicians in the United States

9 WHEN THERE IS A PARADIGM SHIFT… "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.” Scientists do not pre-suppose results. They do not set-out to disprove a hypothesis, as one doctor clearly told me that he or she was going to do. In fact, the exact words to me were: “CCSVI is shit, and I’m setting out to prove that it is shit.” -scientists ask a question, they collect data, and they draw conclusions based on evidence

10 WHEN THERE IS A PARADIGM SHIFT… -Gilenya -approved by the Government in March a year later, it was under post-market review as it had been linked to 11 deaths internationally -Tysabri -approved by the Government in October, June, 2012: 258 cases of PML worldwide and 54 (21%) of those had died -Sept, 2013: 395 cases of PML worldwide and 92 (23%) of those had died

11 WHEN THERE IS A PARADIGM SHIFT… -the CCSVI procedure has been undertaken at least 30,000 times in 60 countries -an angioplasty procedure that is practiced daily in hospitals across this country, and that is practiced on veins -the procedure has been shown to be safe in safety studies Why the dichotomy with pharmaceuticals?

12 TOOLS FOR CHANGE Speak with one voice Develop your asks Develop a letter writing campaign to all MPs and Senators Develop a petition ons/petitionsPG2008__Pg02-e.htm Develop motions Develop written order paper questions Ask an MP to host a breakfast on the Hill

13 THANK YOU


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