Government Relations and Advocacy - including CCSVI Working Group

Governments across Canada should take action on CCSVI

The MS Society has called on governments across Canada to take action on CCSVI and many have.

We are pleased that the federal government and CIHR have kept MS at the top of their healthcare agendas. On June 29, 2011, the Honourable Leona Aglukkaq, Minister of Health, announced that the federal government will fund Phase I/II level clinical trials on CCSVI and MS. In November, 2011, the government announced that it was ready to accept research proposals for the Phase I/II clinical trial on chronic cerebrospinal venous insufficiency (CCSVI). The request for research proposals is a collaborative initiative between the CIHR and the MS Society of Canada. CIHR will also continue to work with the provinces and territories as it moves forward with this initiative. The MS Society of Canada has committed funding towards the financial cost of a clinical trial.

CIHR will announce the successful research team in March 2012. The selected team will then need to obtain ethics approval from relevant institutional research ethics board(s) before conducting the trial.

We encourage governments of provinces and terrorities to fund therapeutic clinical trials. The MS Society of Canada has committed $1 million towards the financial cost of a clinical trial. In May 2010, the MS Society of Canada asked the federal government to earmark $10 million for clinical trials.

On March 23, 2011, in responding to requests from the MS Society, the federal minister of health announced a new monitoring system for MS. Once in place, it will capture information to help identify disease patterns and track treatments and long-term outcomes for people living with MS, including those who have undergone treatment for CCSVI.

The MS Society of Canada continues to ask governments to ensure that no Canadian, who undergoes treatment for CCSVI outside of Canada, is denied necessary post-treatment and follow-up medical care they require when they return home. This is primarily the responsibility of provinical and territorial governments.

Several governments across Canada have taken action on CCSVI. The MS Society welcomes these initiatives and urges other governments to act now. To add your voice, please see details below about how to reach your elected officials.

Government Commitment Additional resources/ links
Federal Funding design and launch of Phase I/II level clinical trials

Announcement by the Honorable Leona Aglukkaq, Minister of Health

CIHR website

In response to MS Society request to create or coordinate an MS registry, announced a new MS monitoring system. PHAC press release

CIHI press release

In response to MS Society request of $10 million commitment for clinical trials, held August 2010 meeting of scientific experts to examine MS research including CCSVI. Summary report of the August 2010 Meeting of Experts on MS Research
Established Scientific Expert Working Group to monitor research studies of CCSVI Frequently Asked Questions

Terms of Reference and Membership Scientific Expert Working Group

British Columbia Funding for a BC CCSVI patient registry, development of care protocol and rapid access to care Press Release
Yukon

Joined Saskatchewan-led clinical trial commitment

Press Release

Alberta The Alberta Multiple Sclerosis Initiative (Tamsi) Observational Study TAMSI
During spring and summer 2011, Minister of Health and Wellness Gene Zwozdesky has publically committed the government of Alberta to providing up to $6 or 7 million for a clinical trial of CCSVI and MS if and when safe and ethical to proceed. Government announcement: Alberta commits to study MS (CCSVI) treatment
December 16, 2010, government of Alberta committed up to $1 million for observational study of those who have had CCSVI procedure. Also committed funding for clinical trial if and when safe and ethical to proceed. Alberta Health Services - August 6, 2010 Statement

Alberta Health Services - February 16, 2010 Statement

Post-treatment and follow up medical care Alberta College of Physicians and Surgeons -- Managing patients with Multiple Sclerosis after out-of-country endovascular treatment for "CCSVI", March 4, 2011
Northwest Territories

No formal commitment

Saskatchewan

September 23, 2011, Health Minister Don McMorris announced that Saskatchewan is finalizing a partnership with U.S researchers and is prepared to fund the participation of Saskatchewan patients in amultiple sclerosis (MS) clinical trial in Albany, New York.

Link to the Government of Saskatchewan website

Manitoba

April 5, 2011, government of Manitoba will provide $5 million for clinical trial of CCSVI procedure and will follow the research protocol developed by the government of Saskatchewan.

Government announcement: Saskatchewan and Manitoba Partner on MS Liberation Clinical Trial Research

Nunavut

No formal commitment

Ontario

March 1, 2011, government of Ontario created expert panel to define best practices in follow-up care for people who have gone abroad for CCSVI treatment and promised to support federal government if national MS registry developed.

Guidelines

Multiple sclerosis expert advisory group

Ontario Health Technology Advisory Committee - May 2010 Recommendation

Quebec

No formal commitment

Quebec Division, MS Society advocated for follow up information for those travelling abroad to obtain CCSVI related-procedures. Ministry of Health and Social Services mandated a report by INESS

Le Collège des médecins du Québec, l'Association des radiologistes du Québec et l'Association des neurologues du Québec :

Management of multiple sclerosis patients returning to Quebec after venoplasty treatment for chronic cerebrospinal venous insufficiency (CCSVI)

Report from INESS, Diagnosis and Treatment of Chronic Cerebrospinal Venous Insufficiency (CCSVI) in People with Multiple Sclerosis (MS)

New Brunswick

June 15, 2011, government of New Brunswick launches patient assistance fund to provide matching funding for people with MS seeking CCSVI procedure.

News release

Nova Scotia Nova Scotia - November 2010 - committed Nova Scotia physicians to providing appropriate post-procedure care.
Prince Edward Island Prince Edward Island - February 2011 - committed PEI physicians to providing appropriate post-procedure care.

Newfoundland and Labrador

September 13, 2010, the government of Newfoundland and Labrador announced initial funding of $320,000 and later an additional $80,000 for an observational study of people who have had the CCSVI procedure compared to people who have not.

Government announcement: Observational study results

How health care decisions are made

Decisions related to the availability and public reimbursement of medical treatments and services are made at different points within the Canadian health care system and often involve collaboration between federal, provincial and territorial governments, their respective drug and/or health technology assessment bodies, and appropriate professional associations that provide health related accreditation. Decision making processes can, at times, be very complex and can differ, sometimes significantly, between jurisdictions.

Ultimately, provincial and territorial governments have authority and influence over the delivery and public reimbursement of medical treatments and services in their respective jurisdictions. An important role is played by a respective college of physicians and surgeons. Each province has a college of physicians and surgeons which is governed by legislation that entrusts the college with the responsibility to establish, monitor and enforce high standards of qualification and medical practice across the province. Patient safety is of priority to these colleges.

If you have questions about how health care decisions are made in your province, we encourage you to contact your provincial or territorial ministry of health.

Further resources and links

Following are links to other resources of interest.

Proceedings of the Subcommittee on Neurological Disease. The subcommittee of the House of Commons Standing Committee on Health held meetings that focused on MS and CCSVI on May 6, May 11, June 1 and June 15. You can read the proceedings of the meetings by using the calendar to take you to the correct date and then clicking on "Evidence." Here is the subcommittee link.

Want to know more about provincial perspectives?

Links to Parliament of Canada and provincial and territorial legislatures

If you would like to encourage your government to act, you can contact your elected representatives by using the information at the following websites. Some of them have search features that allow you to enter your postal code to find your Member of Parliament or member of provincial or territorial legislature.

CCSVI Working Group

The National Board of Directors of the MS Society of Canada has established a CCSVI Working Group to provide advice and recommendations to the board concerning CCSVI. The purpose of the group is to impact positively the MS Society's approach to its research, treatment and advocacy activities related to CCSVI and MS.

The group is comprised of people affected by MS including advocates of CCSVI testing and treatment; members of the clinical and research community including vascular surgeons, an MS neurologist and a representative from the board's Medical Advisory Committee; and members of the National Board of Directors. Please see the list of working group members and their biographies and the CCSVI Working Group terms of reference.

Summaries of CCSVI Working Group meetings will be posted as soon as possible following each meeting.

  1. Meeting of June 6, 2013
  2. Meeting of October 19, 2012
  3. Meeting of April 3, 2012
  4. Meeting of October 3, 2011
  5. Meeting of May 11, 2011
  6. Meeting of February 9, 2011
  7. Meeting of December 10, 2010
  8. Meeting of November 4, 2010
  9. Meeting of October 19, 2010
  10. Meeting of September 20, 2010

To reach the CCSVI working group, email: CCSVIworkgroup@mssociety.ca

To find out about other MS Society government relations and advocacy activities, please visit: mssociety.ca/en/involved/advocacy/default.htm