E-Mail Blitz to CDN Senators - Sept. 26, 2011

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

Re: E-Mail Blitz to CDN Senators - Sept. 26, 2011

Postby 1eye » Tue Sep 27, 2011 1:36 pm

From their FAQ, the composition of the 2010 meeting on CCSVI research was:

CIHR -------------------------------------------------------------------- 5 Drs: 2 from Ottawa, 1 from Edmonton, 2 from Vancouver
1 President,
1 Executive Vice-President,
1 A/Scientific Director, Institute of Circulatory and Respiratory Health
1 Scientific Director, Institute of Neurosciences, Mental Health and Addiction
1 Assistant Scientific Director, Institute of Neurosciences, Mental Health and Addiction

Multiple Sclerosis Society of Canada ------------------------------------ 3 people
1 President and CEO,
1 Senior Vice President,
1 Assistant Vice President

Vancouver UBC Hospital
1 Dr
University of Calgary Hotchkiss Brain Institute
1 Dr
Winnipeg Health Sciences Centre
1 Dr
Toronto Hospitals
4 Drs
Queen's University Kingston
1 Dr
Montreal Neurological Institute
2 Drs
Montreal Interventional Neuroradiology Research Laboratory
1 Dr
Montreal Centre de recherche du CHUM
1 Dr
US National Institutes of Health
1 Dr
University of Texas, US
1 Dr
New York US, Mount Sinai School of Medicine
1 Dr

OBSERVERS 2 Deputy Ministers of Health, Canada and Saskatchewan
1 Newfoundland and Labrador Associate Deputy Minister

Total participation was 26 persons, including only 1 from vascular science, 1 interventional neuroradiologist, many from neurology, many Generals and almost nobody from the trenches. No vascular surgeons.

My comments: very political, huge invitees list. US, MNI, MS Society, and neurology over-represented, Toronto and Montreal over-represented probably because of easy travel. Seems like a jolly, all-expenses Ottawa sightseeing trip. Wonder if wives got to fly in and stay in hotels on our nickel? Very expensive considering what happened this year.
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Re: E-Mail Blitz to CDN Senators - Sept. 26, 2011

Postby esta » Tue Sep 27, 2011 4:03 pm

here's one of my replies I rather find offensive...





I am writing to respond to your email and express my thoughts.



Firstly, I understand that the Minister of Health for Canada has already agreed to support clinical trials.

Secondly, while Senator Cordy's bill will receive careful scrutiny when it is referred to Committee, on the face of it I find the bill to be excessively prescriptive. In plain terms, this bill proposes to 'micro manage' the Minister of Health.

This is not the way the legislative and executive branches are supposed to interface. In our parliamentary system, the legislature 'proposes' and the executive branch 'disposes'. This bill, as I see it, unduly fetters the federal minister, severely limiting the flexibility the minister needs to respond to changing circumstances in the process of implementing and evaluating a clinical trial.



In my experience, I have never seen a bill like this which in effect proposes to 'micro manage' the authority of a Minister. The proper way to deal with the concerns outlined in the bill is to hold the Minister accountable, in Question Period (written or oral) in Parliament, or through a Committee. It is entirely inappropriate, in my view, to impose timelines and otherwise circumscribe the Minister's authority through legislation. Legislation should set out objectives, not the precise roadmap for achieving them.



This bill reads more like a 'business plan' than legislation.



Thirdly, the bill seems to overlook the fact that under our constitution it is provinces and territories who have the authority to undertake clinical trials - not the federal government. The federal government does not deliver health care - it is provinces and territories who do so. So the bill is fundamentally misdirected.


Thanks for expressing your views. Coincidentally, I have received many other emails with the same text.

Yours truly,

Dennis Patterson

Senator for Nunavut
PPMS. Liberated Katowice, Poland
06/05/10 angioplasty RJV-re-stenodsed
26/08/10 stent RJV
28/12/10 follow-up ultrasound intimal hyperplasia
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Re: E-Mail Blitz to CDN Senators - Sept. 26, 2011

Postby Johnson » Tue Sep 27, 2011 5:08 pm

esta wrote:here's one of my replies I rather find offensive...


I am writing to respond to your email and express my thoughts.

...blah, blah, blah...

Thanks for expressing your views. Coincidentally, I have received many other emails with the same text.

Yours truly,

Dennis Patterson

Senator for Nunavut


Coincidentally, I received this same e-mail from Mr. Patterson, but without the coincidental comment on coincidence - perhaps because I wrote of my own positive experiences (3) in a preamble. What an arrogant chump he seems. Someone ought to send him a link to this thread so that he might understand why he received so many e-mails, and his colleagues too. The Senate is a sleepy place... Let us wake them.

I also received one from Mr. Jim Cowan (Leader of the Opposition in the Senate), which was much more commiserative. He made the comment that he did not have much hope that it would pass (nor Dr. Kirsty Duncan's Bill C-280 in the Lower House) because of the Conservative majority in both Houses. I have to concur with that sentiment. Sigh.

I suppose they have received hundreds or thousands of e-mails, so it is no wonder that Mr. Patterson is copy-pasting, and seems annoyed. Mr. Cowan wrote that he thought that it would have some small effect to write with our personal experiences, and was a good thing. Majority government of any persuasion...
My name is not really Johnson. MSed up since 1993
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Re: E-Mail Blitz to CDN Senators - Sept. 26, 2011

Postby Chrystal » Tue Sep 27, 2011 5:29 pm

Thank you to Everyone who participated in the E-Mail Blitz to the Cdn Senators yesterday.

1eye - good reminder of what we're up against after seeing your post about the composition of the 2010 meeting on CCSVI research. A deck that lacks vascular expertise and is completely stacked against CCSVI.

PN - I was delighted to receive Jim Cowan's kind and supportive message.

Johnson and Esta - Coincidentally, I received the same response from Dennis Patterson that you did, along with his comment, "Coincidentally, I have received many other emails with the same text."

For those who haven't already done so, please visit and "like" C.C.S.V.I. Ontario's Facebook site to keep abreast of and participate in the work they are doing. Together we will keep fighting, and we will win this battle to have vascular treatment made available in Canada to those with the label MS.

C.C.S.V.I. Ontario | Facebook
http://www.facebook.com/pages/CCSVI-Ont ... 3851427194
CCSVI Ontario provides objective information and fosters communication and ... WHO WE ARE CCSVI Ontario is organized by and for people who have CCSVI, or...


Take care and thanks again.
Chrystal
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Re: E-Mail Blitz to CDN Senators - Sept. 26, 2011

Postby 1eye » Tue Sep 27, 2011 6:05 pm

I would add: never underestimate the power of the right thing.
-----------------------------------------------------------------------------------------------------------------------------------------
Thank you for your email today, asking for my support for Bill S-204, an Act to establish a national strategy for chronic cerebrospinal venous insufficiency (CCSVI).



Please be assured that I strongly support this bill. It was introduced in the Senate by my colleague, Senator Jane Cordy, and is the result of extensive work by Senator Cordy and our Liberal caucus colleagues in the House of Commons, notably Dr. Kirsty Duncan together with Dr. Hedy Fry and Dr. Carolyn Bennett.



We were pleased when, two days after Senator Cordy tabled her bill, the government reversed its position, and announced that it would proceed with clinical trials of CCSVI. This decision took far too long – we have been calling on the federal government to fund clinical trials of CCSVI in Canada for more than a year – and as you point out in your email, there are still too many unanswered questions.



Canada has one of the highest rates of MS in the world. It is a devastating, unpredictable disease, that takes a terrible toll on patients and their loved ones. Canadians urgently need well-designed clinical trials to establish whether indeed CCSVI can improve the quality of life for those living with MS.



Bill S-204, as you know, calls for clinical trials in multiple centres across Canada (and sets a start date no later than January 1, 2012), but it also requires the Minister of Health to convene a conference with her provincial and territorial counterparts, to establish a national strategy for CCSVI.



I continue to believe that such a national strategy would be the appropriate way to proceed.



Last Wednesday, September 21, Dr. Kirsty Duncan introduced essentially the same bill in the House of Commons (with a slightly revised timetable), Bill C-280. Unfortunately, with a Conservative majority in both Houses of Parliament, I am not optimistic that either bill will succeed. Your efforts in writing to parliamentarians expressing support for these initiatives will undoubtedly help in pressing the government on this issue.



Thank you for taking the time to write to me about this important issue.



Yours very truly,



James S. Cowan

Leader of the Opposition in the Senate
-----------------------------------------------------------------------------------------------------------------------------------------
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
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Re: E-Mail Blitz to CDN Senators - Sept. 26, 2011

Postby Chrystal » Tue Sep 27, 2011 7:02 pm

1-eye - I loved your line about not underestimating the power of the right thing. I hope good and sound conscience will soon motivate all of Canada to do the right thing asap.

Great letter from Jim Cowan expressing his support!

Take care and have a good night!
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