This Is MS Multiple Sclerosis Community: Knowledge & Support

The British Columbia Legislature will be sitting in March.

Let's give them something to talk about!!!

Let's make sure that each MLA representing each community knows that as Canadians, and British Columbians, we expect to have access to appropriate health care NOW!

We want to have testing and treatment for CCSVI made available to anyone at risk, in our own country, within our own fabulous health care system NOW!

HERE IS HOW WE CAN DO IT (in just 10 minutes you can make a difference!)

Plan:

Everyone affected by MS (those living with the disease, their friends, families and communities) can compose, or simply cut and paste a short letter to their Member of the BC Legislative Assembly. The same letter can then be copied and addressed to the Health Minister, to the Health Critic, and to your Member of Parliament. Here are the links you need to forward a letter to a politician and some sample letters.

Do it now!

LINKS TO CONTACTS FOR YOUR POLITICAL REPRESENTATIVES

http://www.leg.bc.ca/Mla/3-1-1.htm

http://www2.parl.gc.ca/Parlinfo/Compila ... x?Menu=HOC


SAMPLE LETTER 1 FROM SOMEONE WHO DOES NOT HAVE MS

Dear

You may be aware that there is a new treatment available to help people suffering with multiple sclerosis. A recent study demonstrated that more than half of those with MS, also have a problem with venous blood flow from their heads. Many people have been tested and treated for this condition (called CCSVI, or Chronic Cerebrospinal Venous Insufficieny), in other countries, with positive results. I understand that neither testing nor treatment are available within the health care system in Canada. Multiple sclerosis affects about 75,000 Canadians. The testing and treatments could be performed easily and at little cost in Canada. Please let me know what is being done to make this testing and treatment available for Canadians.

Name

Address

Phone number

email address

SAMPLE LETTER 2 from someone with MS

Dear :

I am a person with Multiple Sclerosis. I have lived with this disease for the past 18 years. For 8 years I took daily injections of a drug intended to reduce the progression of disability and the number and severity of attacks. The cost of the drug was $40.00 per day; according to a 2004 Cochrane Medical review "(this drug) did not show any beneficial effect on the main outcome measures in MS, i.e. disease progression, and it does not substantially affect the risk of clinical relapses."

There have been many reports in the news media about a treatment being offered to MS sufferers in Italy and Poland; it has also been successfully performed at medical centres in the United States. This treatment involves either simple angioplasty or the insertion of stents into veins in the neck to resolve a condition called CCSVI; it has been demonstrated that more than half of people with multiple sclerosis have compromised blood flow in the veins that return blood from the head, and that restoring proper blood flow relieves many symptoms of MS.

I am shocked and distressed that I cannot receive the tests required to assess the condition of my veins unless I travel abroad at considerable personal expense, nor could I receive the treatment if it were indicated, here in Canada.

What needs to be done to make sure that these procedures are available here at home in short order? 75,000 Canadians with MS, plus their friends, family and neighbours are prepared to take immediate action. What can you do to help?

Please contact me at your earliest convenience to let me know what assistance you can provide.

Name

Address

Telephone number

email address

Or create your own letter

Letters can be emailed, or printed and posted.

CORRECTION. Postage is required on letters addressed to your MLA or any provincial elected representatives. Federal elected representatives... Prime Minister , Minister of Health, Federal Health Critic, Member of Parliament can receive mail sent to the Parliament Hill without postage

The content should be clear and brief. No fancy wording required.

It should include what you want. CCSVI testing and treatment for all of those at risk ie. people with MS.

You can include a few facts about CCSVI and MS that you think are important.

If you do write a letter, please post in this thread saying that you did, so that we can keep track of our progress. We can make a difference.

Thanks, Brightspot - for the plan, the ideas, and the samples. My letter will be emailed to my representatives today!

This looks really good, Brightspot. But I think the letters leave open for the politician to just rely on "further testing needs to be done, trials are underway, the MS society does not recommend going abroad for treatment, etc.".

What I'd like to know is, if a vascular surgeon was not told to withhold treatment from MS patients, at what point would he have treated stenosis anyway. Also, what are the risks associated with angioplasty. Are they equivalent in risk level to having, eg, being put under general anesthesia to have wisdom teeth removed? I'm trying to find this information out at the moment to try to lobby for CCSVI treatment, at least with angioplasty, in Ontario. I don't have any answers now though.

TFau
If you send a letter to a politician it will let them know that voters think this is an important issue.
If they advise you to wait, you can begin a dialogue with them. You can ask what risk is associated with an ultra sound test. Most pregnant women have them done to check on the health of their babies during pregnancy!
There are lots of great posts on this site talking about the lack of risk for testing and treatment.

Brightspot, my husband & I were just talking about writing letters to politicians at lunch today. Right now it seems CCSVI is mostly talked about amongst the MS groups. We need to get more people on board to start pressuring the government to make testing/treatment available.

Thanks for doing the legwork!

I posted, as you suggested, on the CCSVI at UBC facebook page. We have several letter writers already reporting in.

Don't forget the health authorities too. They are the ones with the personnel and equipment.

Sandra

_________________
National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />

I just sent a letter to MLA George Abbott- Shuswap

Okanagan--Shuswap, British Columbia
Mayes, Colin letter was sent

This is really good Brightspot!
I might suggest also sending letters to Senator W ( Dr) Keon, the reknowned heart surgeon from Ottawa. MS Liberation met with him and had some very encouraging words from him - so let's get busy Canadians!
... the squeaky wheel gets the grease!

This is great will be getting letters out today.

Just sent letter to
John Les - MLA for Chilliwack
Chuck Strahl - MP

Working on letters to Minister of Health!

Vancouver - Pt. Grey.. My MLA is Premier Gordon Campbell and I've sent him 4 letters today to go with all the others I've sent over the last couple of months. A close friend, working with various Gov. of Alberta Ministries has advised that..."the best way to be heard is to 'keep talking''!

I personally would never ever do this. I will not see more people die, test the iron metabolism!

Hello - Thank you for the sample letters - I have sent an email with this letter to my MP, MPP, Mayor and one Councellor (York Region - N of Toronto) - so far the MPP replied with an email asking for my mailing address. If I get further I will post my reply. I think it is important for us to ask why we are not being provided with testing and treatment in Canada - it is also important for all of us to post the explanations we are given. Maybe we can be helpful in helping them move this issue forward in Parliament. I also added the following quote in my letter.

The following is a direct quote from Dr. Tom Gilhooly:

“It has now been established beyond any doubt that CCSVI is a definite clinical entity. The uni0n of International Phlebologists which represents 47 countries, unanimously endorsed this as a new condition at their conference in Monte Carlo in 2009. They decided Professor Zamboni had established “proof of concept” for this new condition. The papers from Zamboni and most recently from Buffalo University in New York have also established that there is a definite association between CCSVI and MS. It has also been established that CCSVI is a congenital disorder and precedes the development of MS”

Keep moving - any way you can!

Dear

I have an important issue I'd like to make you aware of as my MLA, so that you can push for a solution in the legislature.

Two of my sisters have multiple sclerosis. I'm sure you are aware of the seriousness of this disease...it is so frequent in Canada that you probably have a family member, friend or acquaintance who is one of the 75,000 Canadians with MS. Canada has one of the highest rates of MS in the world, but instead of being leaders in research and implementation of new treatment options, we are falling behind.

You may be aware that there is a new treatment available to help people suffering with multiple sclerosis. Several recent peer reviewed studies demonstrated that more than half of those with MS have a problem with venous blood flow from their heads: flow is restricted by up to 90%. This condition (called CCSVI, or Chronic Cerebrospinal Venous Insufficiency), has been identified in other countries, including the US, and successfully treated using standard vascular surgery to restore normal blood flow.

In Canada, neither testing nor treatment are available within the health care system. This testing and treatment could be performed easily and cost effectively in Canada, using standard equipment and well established procedures. The benefit to a large proportion of those with MS would be significant.

I don't know about you, but if I learned that the blood flow in my head was restricted, I'd like to have the problem addressed whether I had MS or not. But for those with MS, the matter is urgent. Please discuss this problem with your legislative colleagues, and work to have these tests and procedures adopted in BC. If you want to learn more, please call or email me, and I will provide you with specific information. There is also current information including citations at
http://www.thisisms.com/ftopict-7098.html

Thanks