This Is MS Multiple Sclerosis Community: Knowledge & Support

Sent: May 5, 2010 11:09 AM
To: Smith, Joy - M.P.; Duncan, Kirsty - M.P.; Brown, Patrick - M.P.; Leslie, Megan - M.P.; Malo, Luc - Député
Subject: CCSVI - Your assistance please

GOVERNMENT RESPONSE[/b]

Dear,

Thank you for your letter. Ms. Duncan has asked me to forward you her Order Paper question which has been tabled in the House of Commons and must be answered by the government.

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?


Have a good day,

Ryan Murphy
Legislative Assistant
Office of Kirsty Duncan, MP, Etobicoke North
613 Confederation Building
(p) 613-995-4702
(f) 613-995-8359

-----Original Message-----

It's a start. Well done!

Gordon, that is not really the "government" (as in Harper government) response. Rather it is from an MP on the sub-committee that put those questions to the government.
...Ted

_________________
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com

No it was a response to me, when I asked a few questions. I understand what you are saying but I believe it was coached by teh MS society of Canada.

They have to stop listening to MS society.

G