LESSONS LEARNED AND HOW TO MOVE FORWARD
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Transcript of LESSONS LEARNED AND HOW TO MOVE FORWARD
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Kirsty Duncan MP
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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
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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.
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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
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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?
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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
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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:-).”
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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
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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
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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
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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?
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TOOLS FOR CHANGESpeak 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
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THANK YOU