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

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

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

Postby Chrystal » Thu Sep 22, 2011 5:38 pm

The following was prepared and posted by C.C.S.V.I. Ontario on Facebook. Please - we all need to follow their lead and participate in this e-mail blitz to Canadian Senators on Sept. 26th. Numbers are very important! Thank you.

Please Note: I was not able to copy and paste the very important table and graphic located towards the end of C.C.S.V.I. Ontario's sample letter, so please visit this link https://www.facebook.com/pages/CCSVI-in ... 4790143433 to view, copy and send the letter in its entirety. Thank you.



~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Email Blitz to Canadian Senators - Sept. 26, 2011.
by C.C.S.V.I. Ontario on Thursday, 22 September 2011 at 16:34.

SUPPORT FOR SENATE BILL S-204, AN ACT TO ESTABLISH A NATIONAL STRATEGY FOR CCSVI

The Senate will resume sitting on Tuesday, September 27, 2011. At some point the Senators will consider Senate Bill S-204 for second reading. Please join us in urging the Senators to support Bill S-204. We have prepared a sample letter to Senators, for you to use, or you can write your own letter, a summary of the Bill, a comparison of the Bill and the Minister of Health’s clinical trial proposal, a graphic showing the timelines for the proposals in the Bill and the Minister’s proposal, and questions about the Minister’s proposal.

Email addresses for Canadian Senators: http://www.facebook.com/note.php?create ... 0256851553

**If it's easier for you, the Senators' email addresses are also on the CCSVI Ontario Facebook page.

PLEASE JOIN US. THIS IS IMPORTANT AND WE NEED YOUR PARTICIPATION.

Note: footnotes 1 and 2 in "CHRONIC CEREBROSPINAL VENOUS INSUFFICIENCY (CCSVI), CLINICAL TRIALS - A COMPARISON" are:

1 Terms of Reference and Membership, Scientific Expert Working Group, http://www.cihr-irsc.gc.ca/e/42635.html

Frequently Asked Questions on the Work of the Scientific Expert Working Group, http://www.cihr- irsc.gc.ca/e/43953.html

2 An Act to establish a national strategy for chronic cerebrospinal venous insufficiency (CCSVI), http://www.parl.gc.ca/HousePublications ... 399&file=4


SAMPLE LETTER TO SENATORS TO SUPPORT SENATE BILL S-204

Dear Senator,

In the coming days you will be considering, for second reading, Bill S-204, An Act to establish a national strategy for chronic cerebrospinal venous insufficiency (CCSVI). The Bill is sponsored by Senator Jane Cordy and was given First Reading on June 26, 2011.

Chronic Cerebrospinal Venous Insufficiency (CCSVI) is a term coined by Dr. Paolo Zamboni. It is characterized by blood not draining properly from the brain because the veins responsible for that drainage are in some way abnormal. There are five veins involved: the azygous running down beside the heart (which cannot be imaged outside the body), two vertebral veins running down the back of the neck and two jugular veins running down each side of the throat. In his studies, Dr. Zamboni found that these abnormalities are prevalent in people who have Multiple Sclerosis (MS). However, the concept is not new. The vascular component of MS has been known since the 1830s.

Dr. Zamboni pioneered a non-invasive diagnostic tool, Doppler ultrasound, to detect CCSVI and used a well-known, safe and effective procedure, balloon angioplasty, to treat the participants in his study. Balloon angioplasty is one of the most common procedures performed in Canadian hospitals on arteries and veins. Indeed, it is considered a standard of care that is safe and effective. HYPERLINK "http://www.ptca.org/archive/bios/gruentzig.html" \o "http://www.ptca.org/archive/bios/gruentzig.html" Andreas Gruentzig, the “father” of the modern double-lumen balloon catheter to treat arteries and veins, after conducting a few animal and human cadaver experiments, performed his first coronary angioplasty using a “kitchen catheter” on a living person in 1977. After presenting the results of his first four angioplasty cases at a meeting of the American Heart Association that same year, it is reported that his colleagues burst into applause, recognizing this breakthrough with a standing ovation. Thereafter, Gruentzig travelled the country, teaching his method to scores of other doctors. Soon, angioplasty was in widespread use without having gone through (up to that time) a proper clinical trial. (Dr. Lorne Brandes, HYPERLINK "http://healthblog.ctv.ca/post/Treating-CCSVI-What-can-we-learn-from-coronary-angioplasty.aspx" http://healthblog.ctv.ca/post/Treating- ... lasty.aspx)

I (we) urge you to support Bill S-204. A national strategy for CCSVI is desperately needed in Canada and Bill S-204 provides this strategy. While I (we) strongly support the requirements in Bill S-204, I (we) urge that the clinical trials referred to in the Bill be Phase III trials and that these trials be undertaken on an urgent basis with a large patient population in multiple centres across Canada.

Attached is a summary of Senate Bill S-204, a table comparing the government’s clinical trial strategy and the national strategy proposed in Bill S-204, a graph showing the government’s timelines and the Bill’s timelines and questions generated by the government’s clinical trial strategy.

Please support Senate Bill S-204.


Sincerely,

Name, Contact Information


------------------------------------------------------------------------------------


SENATE BILL S-204, SUMMARY

Section 3

Health Minister must, within 30 days after the Act comes into force, convene a conference with the provinces and territories to establish a national strategy for Chronic Cerebrospinal Venous Insufficiency (CCSVI) that includes ensuring proper health care is not refused to individuals who have been treated for CCSVI or who are seeking treatment, establishing, by October 31, 2011, an advisory panel composed of experts who have been or who are actively engaged in imaging or treating CCSVI and a person who has been treated for CCSVI, and ensuring that clinical trials begin in Canada by January 1, 2012.


The Advisory Panel will advise the Minister on treatment for CCSVI, identify the criteria for research proposals on clinical trials for the treatment of CCSVI, advise on the criteria for selecting the best proposals, advise on the development of standards for diagnosing and treating CCSVI, advise on the training and expertise required for individuals diagnosing or treating CCSVI, and advise on methods for tracking individuals who are treated.


Section 4

The Minister must prepare a report setting out the national CCSVI strategy and publish it on the departmental website within one year of the convening of the conference with the provinces and territories.


Section 5

The Minister must provide the report required in Section 4 to the Senate and the House.


Section 6

The Government of Canada must review the effectiveness of the national strategy 5 years from the day the report required in section 4 is published. The Government of Canada must table the report of that review in the Senate and the House.

-----------------------------------------------------------------------------------

QUESTIONS ABOUT THE CLINICAL TRIAL PROPOSAL OF THE FEDERAL MINISTER OF HEALTH/CANADIAN INSTITUTES OF HEALTH RESEARCH (CIHR)

1. Why is the CIHR Scientific Expert Working Group composed of individuals who have not been and are not now actively engaged in treating Chronic Cerebrospinal Venous Insufficiency (CCSVI)?

2. How will the Health Minister ensure that the application process for research is open, transparent and fair?

3. Will conflicts of interest be declared by members of the CIHR Scientific Expert Working Group?

4. Why are Phase I (safety) clinical trials being considered when balloon angioplasty is already an accepted, safe standard of care in Canada? (e.g., Mandato et al, Journal of Vascular Interventional Radiology, Vol. 22, Issue 3, Supplement, Page S4, (http://www.jvir.org/article/S1051-0443(11)00005-4/fulltext)

5. Why are double-blinded Phase II (efficacy) clinical trials being considered when the efficacy of CCSVI treatment has already been established in clinical trials conducted in the United States and elsewhere?

6. Why are Phase III clinical trials not considered, given the safety of balloon angioplasty and the effectiveness of CCSVI treatment for the majority of individuals?

7. What are the specific timelines for the clinical trials?

8. Will the clinical trials be conducted in multi-centres across Canada?

9. What are the criteria for selecting participants?

10. How many participants will be selected?

11. What are the criteria for selecting researchers?

12. What are the criteria to measure results of the clinical trials?

13. What protocols will be used to ensure the objective recording of data?

14. Who will interpret the data collected from the clinical trials?

15. Where will the data collected from these trials be deposited and how will the data be used?

16. When will the data be made public?

17. What funding is available for the clinical trials?

18. Who will decide on the allocation of the funding?

19. What are the criteria for allocating the funding?

20. Will the members of the CIHR Scientific Expert Working Group attend conferences on testing and treating CCSVI?

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

Postby Chrystal » Thu Sep 22, 2011 5:45 pm

E-MAIL ADDRESSES FOR THE SENATORS, AS LISTED ON THIS C.C.S.V.I. ONTARIO FACEBOOK LINK...

https://www.facebook.com/pages/CCSVI-in ... 0256851553


Email addresses for Canadian Senators

Sept. 2011 (MAC & PC Versions)


PC Version

andrer@sen.parl.gc.ca; anguswd@sen.parl.gc.ca; bakerg@sen.parl.gc.ca; gautht@sen.parl.gc.ca; boisvp@sen.parl.gc.ca;

braled@sen.parl.gc.ca; brazep@sen.parl.gc.ca; brownb@sen.parl.gc.ca; callbc@sen.parl.gc.ca; campbel@sen.parl.gc.ca; carigc@sen.parl.gc.ca; carsts@sen.parl.gc.ca; champa@sen.parl.gc.ca; chapum@sen.parl.gc.ca; cochre@sen.parl.gc.ca; comeag@sen.parl.gc.ca; coolsa@sen.parl.gc.ca; cordyj@sen.parl.gc.ca; cowanj@sen.parl.gc.ca; dallar@sen.parl.gc.ca; dawsod@sen.parl.gc.ca; dayja@sen.parl.gc.ca; debanp@sen.parl.gc.ca; tessil@sen.parl.gc.ca; dininc@sen.parl.gc.ca; dicksf@sen.parl.gc.ca; pdowne@sen.parl.gc.ca; mikeduffy@sen.parl.gc.ca; dyckli@sen.parl.gc.ca; eatonn@sen.parl.gc.ca; egglea@sen.parl.gc.ca; fairbj@sen.parl.gc.ca; finled@sen.parl.gc.ca; fortis@sen.parl.gc.ca; foxf@sen.parl.gc.ca; frasej@sen.parl.gc.ca; fruml@sen.parl.gc.ca; fureyg@sen.parl.gc.ca; greens@sen.parl.gc.ca; harbm@sen.parl.gc.ca; hervic@sen.parl.gc.ca; lacomd@sen.parl.gc.ca; hublee@sen.parl.gc.ca; jaffem@sen.parl.gc.ca; johnsj@sen.parl.gc.ca; joyals@sen.parl.gc.ca; kennyco@sen.parl.gc.ca; kinsen@sen.parl.gc.ca; kochhv@sen.parl.gc.ca; langd@sen.parl.gc.ca; lebrem@sen.parl.gc.ca; losier@sen.parl.gc.ca; smithc@sen.parl.gc.ca; mahovf@sen.parl.gc.ca; mannif@sen.parl.gc.ca; marshe@sen.parl.gc.ca; martin@sen.parl.gc.ca; massip@sen.parl.gc.ca; mccoye@sen.parl.gc.ca; meighen@sen.parl.gc.ca; mercet@sen.parl.gc.ca; merchp@sen.parl.gc.ca; meredd@sen.parl.gc.ca; mitchg@sen.parl.gc.ca; mocklp@sen.parl.gc.ca; moorew@sen.parl.gc.ca; munsoj@sen.parl.gc.ca; murral@sen.parl.gc.ca; mcgeed@sen.parl.gc.ca; neufer@sen.parl.gc.ca; nolinp@sen.parl.gc.ca; ogilvk@sen.parl.gc.ca; olived@sen.parl.gc.ca; patted@sen.parl.gc.ca; pepinl@sen.parl.gc.ca; russem@sen.parl.gc.ca; plettd@sen.parl.gc.ca; poirir@sen.parl.gc.ca; poulim@sen.parl.gc.ca; poyv@sen.parl.gc.ca; rainen@sen.parl.gc.ca; ringup@sen.parl.gc.ca; rivarm@sen.parl.gc.ca; jcrivest@sen.parl.gc.ca; runcib@sen.parl.gc.ca; kfl@sen.parl.gc.ca; seidmj@sen.parl.gc.ca; sibnic@sen.parl.gc.ca; smithd@sen.parl.gc.ca; stgerg@sen.parl.gc.ca; stewac@sen.parl.gc.ca; stratt@sen.parl.gc.ca; tardic@sen.parl.gc.ca; tkachd@sen.parl.gc.ca; vernej@sen.parl.gc.ca; wallaj@sen.parl.gc.ca; wallinp@sen.parl.gc.ca; wattc@sen.parl.gc.ca; zimmer@sen.parl.gc.ca;


MAC Version

andrer@sen.parl.gc.ca, anguswd@sen.parl.gc.ca, bakerg@sen.parl.gc.ca, gautht@sen.parl.gc.ca, boisvp@sen.parl.gc.ca,

braled@sen.parl.gc.ca, brazep@sen.parl.gc.ca, brownb@sen.parl.gc.ca, callbc@sen.parl.gc.ca, campbel@sen.parl.gc.ca, carigc@sen.parl.gc.ca, carsts@sen.parl.gc.ca, champa@sen.parl.gc.ca, chapum@sen.parl.gc.ca, cochre@sen.parl.gc.ca, comeag@sen.parl.gc.ca, coolsa@sen.parl.gc.ca, cordyj@sen.parl.gc.ca, cowanj@sen.parl.gc.ca, dallar@sen.parl.gc.ca, dawsod@sen.parl.gc.ca, dayja@sen.parl.gc.ca, debanp@sen.parl.gc.ca, tessil@sen.parl.gc.ca, dininc@sen.parl.gc.ca, dicksf@sen.parl.gc.ca, pdowne@sen.parl.gc.ca, mikeduffy@sen.parl.gc.ca, dyckli@sen.parl.gc.ca, eatonn@sen.parl.gc.ca, egglea@sen.parl.gc.ca, fairbj@sen.parl.gc.ca, finled@sen.parl.gc.ca, fortis@sen.parl.gc.ca, foxf@sen.parl.gc.ca, frasej@sen.parl.gc.ca, fruml@sen.parl.gc.ca, fureyg@sen.parl.gc.ca, greens@sen.parl.gc.ca, harbm@sen.parl.gc.ca, hervic@sen.parl.gc.ca, lacomd@sen.parl.gc.ca, hublee@sen.parl.gc.ca, jaffem@sen.parl.gc.ca, johnsj@sen.parl.gc.ca, joyals@sen.parl.gc.ca, kennyco@sen.parl.gc.ca, kinsen@sen.parl.gc.ca, kochhv@sen.parl.gc.ca, langd@sen.parl.gc.ca, lebrem@sen.parl.gc.ca, losier@sen.parl.gc.ca, smithc@sen.parl.gc.ca, mahovf@sen.parl.gc.ca, mannif@sen.parl.gc.ca, marshe@sen.parl.gc.ca, martin@sen.parl.gc.ca, massip@sen.parl.gc.ca, mccoye@sen.parl.gc.ca, meighen@sen.parl.gc.ca, mercet@sen.parl.gc.ca, merchp@sen.parl.gc.ca, meredd@sen.parl.gc.ca, mitchg@sen.parl.gc.ca, mocklp@sen.parl.gc.ca, moorew@sen.parl.gc.ca, munsoj@sen.parl.gc.ca, murral@sen.parl.gc.ca, mcgeed@sen.parl.gc.ca, neufer@sen.parl.gc.ca, nolinp@sen.parl.gc.ca, ogilvk@sen.parl.gc.ca, olived@sen.parl.gc.ca, patted@sen.parl.gc.ca, pepinl@sen.parl.gc.ca, russem@sen.parl.gc.ca, plettd@sen.parl.gc.ca, poirir@sen.parl.gc.ca, poulim@sen.parl.gc.ca, poyv@sen.parl.gc.ca, rainen@sen.parl.gc.ca, ringup@sen.parl.gc.ca, rivarm@sen.parl.gc.ca, jcrivest@sen.parl.gc.ca, runcib@sen.parl.gc.ca, kfl@sen.parl.gc.ca, seidmj@sen.parl.gc.ca, sibnic@sen.parl.gc.ca, smithd@sen.parl.gc.ca, stgerg@sen.parl.gc.ca, stewac@sen.parl.gc.ca, stratt@sen.parl.gc.ca, tardic@sen.parl.gc.ca, tkachd@sen.parl.gc.ca, vernej@sen.parl.gc.ca, wallaj@sen.parl.gc.ca, wallinp@sen.parl.gc.ca, wattc@sen.parl.gc.ca, zimmer@sen.parl.gc.ca,

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

Postby Doodles » Thu Sep 22, 2011 5:50 pm

Thamk you for posting Chrystal. Numbers count so, please, Canadian friends, join the email blitz on Monday, 26 September.
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Re: E-Mail Blitz to CDN Senators - Sept. 26, 2011

Postby Chrystal » Thu Sep 22, 2011 5:58 pm

Thank YOU for all your great work, Doodles :)!!
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Re: E-Mail Blitz to CDN Senators - Sept. 26, 2011

Postby PointsNorth » Thu Sep 22, 2011 7:24 pm

I sent my letter, copying my MP as well.

Thanks for organizing, PN
Albany 2010. Brooklyn 2011
Calcitriol+D3 2013-
Hurry up and wait.
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Re: E-Mail Blitz to CDN Senators - Sept. 26, 2011

Postby Chrystal » Fri Sep 23, 2011 6:12 am

Thank you, PointsNorth.

I get no credit :). All thanks go to the C.C.S.V.I. Ontario Facebook group for putting this together. They have done and continue to do a lot of great work in Canada on the CCSVI front. I encourage everyone to "like" their facebook site to keep abreast of and participate in the work they are doing. Together 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...

Everyone - lets get our letters ready to send en masse on Sept. 26th!! Don't forget to view C.C.S.V.I. Ontario's sample letter in its entirety on their Facebook page at the link above. Thank you!!!
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Re: E-Mail Blitz to CDN Senators - Sept. 26, 2011

Postby PointsNorth » Fri Sep 23, 2011 10:43 am

Already received responses from Senators Mobina Jaffer & Nancy Green Raine. Senator Jaffer seems well appraised of Dr. Duncan's good work.
Albany 2010. Brooklyn 2011
Calcitriol+D3 2013-
Hurry up and wait.
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Re: E-Mail Blitz to CDN Senators - Sept. 26, 2011

Postby Hockeydad » Fri Sep 23, 2011 1:24 pm

Senator Mercer sent me a note of support as well.
RRMS since Feb , 2010. No drugs, just vitamins and exercise.
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Re: E-Mail Blitz to CDN Senators - Sept. 26, 2011

Postby esta » Fri Sep 23, 2011 3:19 pm

all ready for monday!
tx crystal!!!! :-D
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 Chrystal » Fri Sep 23, 2011 8:28 pm

That's great, PointsNorth and Hockeydad! Let's hope many more positive responses are received.

Thank you, Esta!!

Have a wonderful weekend, Everyone!
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Re: E-Mail Blitz to CDN Senators - Sept. 26, 2011

Postby Chrystal » Sat Sep 24, 2011 8:41 am

*bump* with a "thank you" all!
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Re: E-Mail Blitz to CDN Senators - Sept. 26, 2011

Postby Chrystal » Sun Sep 25, 2011 10:25 am

*bump*

Have a lovely Sunday, Everyone!
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Re: E-Mail Blitz to CDN Senators - Sept. 26, 2011

Postby Hooch » Sun Sep 25, 2011 2:05 pm

I sent my letter adding that I was treated a year ago in Albany where the people from Saskatchewan are supposed to be going. Glad people are getting replies.
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Re: E-Mail Blitz to CDN Senators - Sept. 26, 2011

Postby Chrystal » Sun Sep 25, 2011 4:22 pm

Thank you, Hooch! It's good that you added about your own treatment in Albany a year ago!

One more day - hope we all receive positive and supportive replies.

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

Postby PointsNorth » Mon Sep 26, 2011 3:09 pm

Just received letter of support from Jeff Cowan, Leader of Opposition in the Senate.

PN
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Hurry up and wait.
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