hear ye! hear ME! Oh Canada...

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

hear ye! hear ME! Oh Canada...

Postby PCakes » Tue Jun 01, 2010 8:52 am

..today, tomorrow and each day thereafter .. pick up the phone, click send, mail a letter..!!

"I am a Canadian. My name is _______ and as a Canadian I have a right to, and demand, diagnosis and treatment for any and all health issues regardless of pre-existing conditions. Chronic Cerebro-Spinal Venous Insufficiency is a treatable health issue. Denying persons with Multiple Sclerosis diagnosis and treatment is prejudicial and unethical."

Minister of Health Canada e-mail contact info:
http://www.hc-sc.gc.ca/contact/ahc-asc/minist-eng.php

Minister of Health Canada postal mailing address:
The Honourable Leona Aglukkaq, P.C., M.P.
Health Canada
Brooke Claxton Building, Tunney's Pasture
Postal Locator: 0906C
Ottawa, Ontario K1A 0K9

Dr. Kirsty Duncan Liberal MP - Critic Public Health Canada
e-mail address:
Duncan.K@parl.gc.ca
postal address:
Dr. Kirsty Duncan Liberal M.P.
House of Commons
Ottawa, ON K1A 0A6
Phone: (416) 747-6003
Fax: (416) 747-8295

Minister of Health Services British Columbia Kevin Falcon
e-mail address:
kevin.falcon.mla@leg.bc.ca
postal address:
MINISTRY OF HEALTH SERVICES
1515 BLANSHARD STREET
VICTORIA BC V8W 3C8
Telephone:
Toll-free in B.C.: 1 800 465-4911
In Victoria: 250 952-1742

Other Provincial/ Territorial Ministries of Health:
http://www.hc-sc.gc.ca/hcs-sss/delivery ... ex-eng.php

Filing a complaint/ concern to the 'College of Physicians & Surgeons British Columbia'
https://www.cpsbc.ca/public-info/compla ... d-concerns
Last edited by PCakes on Wed Jun 02, 2010 8:13 pm, edited 4 times in total.
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Postby BooBear » Tue Jun 01, 2010 8:53 am

Great work, PCakes. I wish we had the same list for Americans!

I did send an email to the White House. :) No response just yet.
Three veins angioplastied.  One renewed life.  
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Postby Cece » Tue Jun 01, 2010 8:55 am

BooBear wrote:Great work, PCakes. I wish we had the same list for Americans!

Well, let's pull it together!
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby PCakes » Tue Jun 01, 2010 8:59 am

Thanks...I did think of our Southern neighbours while I was doing this..wish I understood your health system better and I'd be happy to help if you let me know where to start..
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Postby BooBear » Tue Jun 01, 2010 11:55 am

Maybe this is a good start?

http://www.ada.gov/investag.htm

The Americans with Disabilities Act prohibits discrimination of medical treatment based upon a disability.
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Postby garyak » Tue Jun 01, 2010 5:58 pm

I just sent the health minister an email, thanks for making it easy to email them. This is my first reply post - weeeee.
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Ontario

Postby Hope66 » Tue Jun 01, 2010 6:05 pm

Oh...and for those in Ontario...pretty much anyone who works for the province (including the Premier) can be reached by the following email:

first name, dot, last name, dot ontario,dot ca.

For example: joe.blow@ontario.ca

Cheers,
Hope
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Dx March 2003
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Americans in USA...write here !!

Postby Kate_PghPA » Tue Jun 01, 2010 7:07 pm

Thank you BooBear

Health and Human Services. Complaints about government programs, services, or activities related to child care, elder care, preschool, social services, or health care programs (including schools of medicine, dentistry, nursing and other health-related fields) should be directed to:

U.S. Department of Health and Human Services
Office for Civil Rights
200 Independence Avenue, S.W.
Room 509F HHH Building
Washington, D.C. 20201

http://www.hhs.gov/ContactUs.html


WILL they HEED us NOW ? ? ?
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Postby nicknewf » Tue Jun 01, 2010 7:22 pm

Here is today's neurological disease subcommittee audio

http://parlvu.parl.gc.ca/Parlvu/TimeBan ... rmatID=710
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Postby PCakes » Tue Jun 01, 2010 9:26 pm

Garyak.. welcome!! and good job!!
thanks for making it worth while..:)
Last edited by PCakes on Thu Jun 03, 2010 3:23 am, edited 1 time in total.
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Postby PCakes » Tue Jun 01, 2010 10:11 pm

Hi BooBear, Kate, Cece.. I did some surfing on this site... http://www.hhs.gov/
not a peep on CCVSI.. !
This seems a good place to start.. http://www.hhs.gov/feedback.html
and...
Information for Americans with Disabilities
"HHS has a strong commitment to Americans with disabilities. Learn about President Obama’s Year of Community Living and visit the Office on Disability’s website for more information." http://www.hhs.gov/od/index.html
or e-mail: ODInfo@hhs.gov

I'm not having any luck finding contact info for: HHS Secretary Kathleen Sebelius
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Re: hear ye! hear ME! Oh Canada...

Postby PCakes » Wed Jun 02, 2010 8:14 pm

PCakes wrote:..today, tomorrow and each day thereafter .. pick up the phone, click send, mail a letter..!!

"I am a Canadian. My name is _______ and as a Canadian I have a right to, and demand, diagnosis and treatment for any and all health issues regardless of pre-existing conditions. Chronic Cerebro-Spinal Venous Insufficiency is a treatable health issue. Denying persons with Multiple Sclerosis diagnosis and treatment is prejudicial and unethical."

Minister of Health Canada e-mail contact info:
http://www.hc-sc.gc.ca/contact/ahc-asc/minist-eng.php

Minister of Health Canada postal mailing address:
The Honourable Leona Aglukkaq, P.C., M.P.
Health Canada
Brooke Claxton Building, Tunney's Pasture
Postal Locator: 0906C
Ottawa, Ontario K1A 0K9

Dr. Kirsty Duncan Liberal MP - Critic Public Health Canada
e-mail address:
Duncan.K@parl.gc.ca
postal address:
Dr. Kirsty Duncan Liberal M.P.
House of Commons
Ottawa, ON K1A 0A6
Phone: (416) 747-6003
Fax: (416) 747-8295

Minister of Health Services British Columbia Kevin Falcon
e-mail address:
kevin.falcon.mla@leg.bc.ca
postal address:
MINISTRY OF HEALTH SERVICES
1515 BLANSHARD STREET
VICTORIA BC V8W 3C8
Telephone:
Toll-free in B.C.: 1 800 465-4911
In Victoria: 250 952-1742

Other Provincial/ Territorial Ministries of Health:
http://www.hc-sc.gc.ca/hcs-sss/delivery ... ex-eng.php

Filing a complaint/ concern to the 'College of Physicians & Surgeons British Columbia'
https://www.cpsbc.ca/public-info/compla ... d-concerns


repost and a reminder.. please please please keep "talking"...
here's some inspiration.. http://www.ctvbc.ctv.ca/servlet/an/loca ... lumbiaHome
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Postby BooBear » Thu Jun 03, 2010 2:52 am

Thanks, PCakes! It is important for all of us to become our own advocates and activists. The more we all join voices, the louder we will become.
Three veins angioplastied.  One renewed life.  
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My letter to politicians

Postby iggy » Fri Jun 04, 2010 2:25 am

I like it ... short, sweet, to the point.

Here's what I sent to both federal and privincial Ministers of Health, my MLA and MP:

Dear Minister:

The parliamentary subcommittee on Neurological Health that met on June 2 heard testimony on CCSVI – a vascular condition that has been shown to be common in a large proportion of people who also suffer from Multiple Sclerosis. Compelling information was presented by Dr McDonald, a vascular surgeon, and by two people who have MS and have had the circulation in their veins improved.

Although in Canada, there are simple, safe procedures for screening for and treating this vascular condition, they are being withheld from people with multiple sclerosis simply because of their MS diagnosis. These services are listed in the provincial medical services plans as insured services and Dr. McDonald estimates the cost to the medical system for testing and treatment at about 1500 dollars. Canadians with MS have left Canada and paid as much as 25,000 dollars to be treated, and are reporting significant improvement to their quality of life. Most persons with MS cannot afford to travel and pay huge sums for treatment.

Please click on the link below and listen to Dr. McDonald's testimony and the heartfelt stories of two Canadians who have received treatment. (there are a few moments of silence before the audio begins) I am sure that you will feel compelled to take every possible action to make screening and treatment immediately available within our publicly funded system, to persons with MS who are also suffering from this crippling vascular condition.


http://www2.parl.gc.ca/committeebusines ... l=40&Ses=3
Go to Meeting #6
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Postby PCakes » Thu Jul 29, 2010 7:19 am

*bump*

Clinical Trial scoreboard..

Saskatchewan - yes (woot!)
Ontario - no
Manitoba - no
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