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LESSONS LEARNED AND HOW TO MOVE FORWARD

LESSONS LEARNED AND HOW TO MOVE FORWARD. Kirsty Duncan MP. 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

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LESSONS LEARNED AND HOW TO MOVE FORWARD

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  1. LESSONS LEARNED AND HOW TO MOVE FORWARD 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 2011 -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, 2006 -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 http://www.parl.gc.ca/About/House/PracticalGuides/Petitions/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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