The election raises many issues for Canadians – the economy, the general state of healthcare, our future as a country, the way our government is run etc. For MS sufferers there is the added burden of the discrimination that we face because we have been labeled “MS”. We have an opportunity in the next six weeks to include the issue of access to testing and treatment for CCSVI to the election agenda. We need to make our voices heard in a loud but united way. The document “Election Direction” sets out some of the steps that MS sufferers, their families and friends can take to make our voices heard in the election and it includes sample questions to direct to candidates. Let’s pull together to improve our quality of life.
1. Find the constituency office (for sitting MPs) or campaign offices of candidates and contact information – telephone, fax, email, website, facebook page etc., in your riding.
2. Find the name and contact information for the campaign manager or volunteer coordinator for each candidate.
3. Find out if the candidates support testing and treatment for CCSVI in Canada with or without clinical trials (see attached sample questions)
4. Provide the information you find to MSers and their families and friends in your riding and try to organize them, if they wish and can do so, into volunteering to work for the candidate who supports testing and treatment – helping at the campaign office, making telephone calls, distributing flyers, offering to drive people to polling stations on election day etc. Campaign donations help as well and are needed.
5. This is an important activity because the press covers these events: attend Town Hall meetings, candidates’ meetings. At Town Hall meetings and candidates’ meetings try to have enough people attend so that each one can ask a question. Sample questions are attached or devise your own to reflect local thinking.
6. Write to local newspapers in support of your candidate, call into radio and TV talk shows to discuss CCSVI and discrimination against MS sufferers.
SHARE INFORMATION ON FACEBOOK, WEBSITES, BLOGS, THROUGH EMAIL
1. Dr. Michael Ignatieff, Leader of the Liberal Party in Canada , has stated publicly (e.g., in an interview with the Globe and Mail, 16 December 2010) that a Liberal Government would launch clinical trials that include testing of and treatment for CCSVI in MS sufferers.
Will a [Conservative, NDP, Bloc, Green] Government make the same commitment? Will your party commit to launching these clinical trials within the first 90 days of forming a government?
2. Chronic Cerebrospinal Venous Insufficiency or CCSVI is a vascular condition characterized by venous malformations primarily the jugular veins and the azygous vein in the chest. The malformations in the veins restrict normal blood flow causing iron deposits in the brains of MS sufferers. People with MS in Canada are denied access to testing for and treatment of this vascular condition because they have MS.
Do you support access to testing and treatment for CCSVI for MS sufferers?
Does your party support this access?
3. Studies conducted in other countries using the techniques for testing and treatment pioneered by Dr. Paolo Zamboni have confirmed his conclusions finding that up to 93% of the MS sufferers participating in the studies showed venous malformations of the jugulars or jugulars and azygous veins (for example, Dr. M. Mehta et al, New York; Dr. M. Al-omari, Jordan). These studies have also confirmed significant clinical improvement in the participants regarding fatigue, mental clarity and physical mobility. The evidence is not anecdotal and the science has been confirmed. (Science presented in March at the annual meeting of the International Society for Neurological and Vascular Disease – ISNVD))
Will you explain why the federal government continues to deny access to testing and treatment of CCSVI for MS sufferers?
Will you explain why the federal government continues to deny the existence of the science?
4. Canadian MS sufferers are forced to leave Canada to obtain testing and treatment for CCSVI at great personal expense. When they return home they are denied access to follow-up care by Canadian doctors.
Will your party, if it forms a government, contact the College of Physicians and Surgeons in each province and insist that MS sufferers who have been treated for CCSVI receive follow-up care from Canadian doctors?
Will you ensure with the College of Physicians and Surgeons in each province that doctors who provide follow-up care do so without fear of reprisal from the College or their peers?
5. Disease modifying drugs are available to MS sufferers with relapsing-remitting MS at a cost of $20,000.00 or more a year. The drugs all have serious side effects. As of 4 March 2011 Tysabri has been linked to causing permanent brain infection in 102 people and 21 deaths. Tysabri has been approved by Health Canada and is funded by provincial healthcare at approximately $40,000.00 per year. The newest drug, Gilenya, causes, among many other side effects, a permanently slowed heart rate. Gilenya has been approved by Health Canada and is already funded by provincial healthcare or will be at approximately $48,000.00 per year. All of these drugs treat MS as an autoimmune disease – a theory that has not been proven. Testing and treatment for CCSVI is estimated at $1,500.00 to $2,000.00.
Why is angioplasty, a safe, well-known, low-risk treatment, denied to MS sufferers but drugs with potentially fatal side effects, are approved by Health Canada and promoted by MS neurologists?
Do you support public money being used to fund the use of drugs with potentially fatal side effects when a less expensive, safe option to improve the quality of life for MS sufferers is available?
[b]Note: Always check the latest statistics for Tysabri because they change every month and not for the better.[/b]