Questions by the Canadian Government on CCSVI - Help please

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Questions by the Canadian Government on CCSVI - Help please

Postby Gordon » Wed May 05, 2010 12:00 pm

Q-2332 - May 3, 2010 - Ms. Duncan (Etobicoke North) - With respect to chronic cerebrospinal venous insufficiency (CCSVI), the "liberation" procedure, and multiple sclerosis (MS):

(a) does Health Canada recognize the International uni0n of Phebology (IUP), and is Canada a member;
(b) does Health Canada recognize the IUP's Consensus Document on the diagnosis and treatment of venous malformations;
(c) will Health Canada be respecting the IUP's standards regarding diagnosis and treatment of venous malformations;
(d) will the government work with the provinces and territories to establish imaging and treatment guidelines for CCSVI and, if so, over what timeline and, if not, why not,
(i) what are the benefits and risks associated with imaging and treatment techniques,
(ii) what are the costs for each of the identified methods;
(e) will the government, in collaboration with the provinces and territories, commit to imaging MS patients for venous malformations, and treating those patients who require interventions and, if not, why not and, if so,
(i) over what timeline,
(ii) what barriers would have to be overcome;
(f) is CCSVI recognized as an official diagnosis and, if so, by what professional medical organizations and how is it defined;
(g) what is the cause of narrow veins in the neck or thorax and what methods could possibly be undertaken to reduce their occurrence either in utero, in childhood, or in adulthood;
(h) with what medical conditions is CCSVI associated;
(i) what are the potential health impacts of CCSVI in the short-term, medium-term and long-term, both with and without treatment; (j) what percentage of MS patients show one or more blocked veins;
(k) what veins, other than the jugular veins, are commonly blocked, damaged, or twisted in the human body,
(i) what imaging procedures are used to identify the problems,
(ii) what interventions are required to address the problems and why,
(iii) what are the possible health impacts if left untreated,
(iv) are interventions time sensitive,
(v) what are the costs of imaging procedures and treatment;
(l) what specific methods are used to investigate CCSVI, what costs are associated with each method, and what are the benefits and risks associated with these techniques;
(m) where in Canada are these imaging methods available and, for each location, what procedures are offered and how much do they cost;
(n) where in the world are private clinics emerging, what are their efficacy and safety records, and what are the imaging and treatment costs;
(o) what percentage of MS patients show a reduction in MS attacks and brain lesions following the liberation procedure;
(p) what percentage of MS patients with little or mild blockage show improvement following the liberation procedure;
(q) what discussions is the government having regarding CCSVI, its imaging, and the possible link with MS;
(r) what studies are government scientists conducting to assess the reliability and validity of imaging techniques, the possible association between CCSVI and MS, and to follow-up on patients who have undergone the liberation procedure;
(s) how much money has the government allocated to research related to CCSVI, the liberation procedure and MS;
(t) what is the estimated number of MS patients in Canada, and what is
(i) the percentage who can no longer work,
(ii) the percentage who depend on family caregivers,
(iii) the percentage who require around-the-clock care from professional caregivers;
(u) what is the estimated national annual economic impact of MS on families and healthcare plans;
(v) what is the estimated national annual cost of disease-modifying therapies, including Copaxone and Interfon, for families and healthcare plans;
(w) what are the projected imaging costs for CCSVI and treatment costs for MS patients who show a vascular abnormality;
(x) what are the projected imaging costs for CCSVI and treatment costs for all MS patients;
(y) what recommendations regarding CCSVI and imaging are being provided by the government to MS patients, particularly regarding
(i) reputable imaging and treatment clinics,
(ii) the pros and cons regarding venoplasty and stents,
(iii) the need for continuing treatment regimes following any liberation procedure;
(z) what steps is the government taking to educate MS patients about blogger patients and sham imaging and treatment centres; and
(aa) what is the estimated number of Canadians who have gone overseas for imaging and treatment, and what tracking is being undertaken of their condition following such trips?
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Postby Hope66 » Wed May 05, 2010 3:09 pm

Hi Gordon...

I'm not sure what kind of help you're asking for, or what "document" you are referencing...

Please provide more background information as well as more specific information on what kind of assistance is required.

Dx March 2003
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Postby happydance » Wed May 05, 2010 3:34 pm

I got the same e-mail. It say's this is an Order Paper of questions which has been tabled in the House of Commons by Ms Duncan and must be answered by the government.
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Postby lilsis » Wed May 05, 2010 3:55 pm

does this mean nothing will be done until all these questions are answered?
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Postby BELOU » Wed May 05, 2010 4:11 pm

If it's the case... Jesus christ that's going to take long!
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Postby Lyon » Wed May 05, 2010 4:20 pm

Last edited by Lyon on Mon Nov 21, 2011 4:59 pm, edited 1 time in total.
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Postby sonia52 » Wed May 05, 2010 7:11 pm

I've worked for the Canadian government during 30 years. I've translated hundreds of questions like this one. The little 2 after the question number, Q-233, means that the government has 45 days to provide his answer. The question has been tabled by a MP of an opposition party (Liberals), Ms Duncan. She gave a copy of it to all participants to the rally in Ottawa this afternoon. Ms Duncan is vice-president of the Parliamentary Sub-Committee of Neurological Diseases of the Health Committee. This sub-committee is new and will held a meeting tomorrow (Thursday 6), from 7:30 to 8:30. I will be present. The subject is : MS and CCSVI. The Sub-Committee will hear 4 witnesses : ... l=40&Ses=3

By the way, last week, Opposition has criticized the government because the answers to Parliamentary question are not given on time. Let's see what they will do with this very long question... It is the longest one I've ever seen.
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Postby Brightspot » Tue May 11, 2010 10:57 am

It is also my understanding that if the question (s) is / are not answered within 45 days the matter must be referred to a committee.

Dr. Duncan, by submitting the order paper question has started the clock ticking.

A parliamentary sub committee devoted entirely to CCSVI would be great. It would result in a review and airing of all related research done to date. It would bring to light the fact that angioplasty is an insured medical service in Canada that persons with MS have been denied.
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