Canadians Write a letter to a politician about CCSVI today!

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

Postby hope410 » Wed Mar 31, 2010 2:06 am

Done!

I encourage everyone to write a personal account of what MS has taken from them and the promise that CCSVI treatment holds and email it to Mr. Dix. Our healthcare is controlled by our government and therefore it is they that needs to relax their grip on the purse strings and fund research and trials quickly. If big pharma and the FDA can have a "fast track" for promising treatments, we need to persuade our government to also have a "fast track" for this promising avenue.

Thanks Brightspot for spearheading this movement to get our government involved in helping us get this going here in Canada!
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Postby Brightspot » Wed Mar 31, 2010 12:52 pm

HI hope
Thanks for taking some action.

I am not really advocating that the government spend money on research in this area. I believe research is important and that it will continue.

Studies have been done. The evidence is in that more than half of those of us with MS also have CCSVI. The evidence is in that CCSVI causes your brain to be less adequately oxygenated.

What I am advocating is that screening be made available to anyone who is at high risk for this vascular condition.

Then anyone who is found to have the vascular condition be allowed to be examined and assessed by a vascular specialist, who could advise them whether they should be treated, what treatments might be available, and what the risks and benefit of such treatments might be.

All of this is possible within our system now. We are simply being refused screening.
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Postby hope410 » Wed Mar 31, 2010 6:28 pm

Sorry, but I don't think you're going to get anywhere until there has been reproducible evidence of efficacy of treatment. We need better research on a larger population before the government will fund screening/ treatment outside of a clinical trial. I want the necessary steps to get moving so we can get to that point.
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Postby Brightspot » Tue Apr 06, 2010 11:20 pm

Please be advised that postage is required on letters to elected provincial representatives, so please put stamps on your letters to MLAs. Elected federal representatives...Prime Minister, Minister of Health, Federal Health Critic, and Members of Parliament can receive mail addressed to them at the Parliament Buildings in Ottawa without postage being paid. I asked this question in MLA Jenny Kwan's office this afternoon. My appology for the misinformation. Email remains free!!

Finally decided to write to the Prime Minister and federal Health Minister today.

The BC oppostion Health Critic Adrian Dix has agreed to raise the matter for discussion in the provincial legislature.

Am meeting with my MP, Libby Davies tomorrow afternoon at her office.
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Postby merida » Fri Apr 16, 2010 12:42 pm

Thanks for escalatiing the importance of chasing down the politicians on this Brightspot. We do pay their salaries after all.

I'm not sure if you have a listing of the email and post addresses for the main people we should be targeting at the Federal level. Perhaps you could (once again) cut and paste a cover letter for us here and we could all send it along (adding our persoanl story as well).

I'm also thinking that if we could post a contact list at both the provinicial and federal level it might encourage people to contact them. People can also contact their local MPP's. What do you think?
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Postby Brightspot » Sat Apr 17, 2010 2:16 am

Hi Merida:

I just mostly copied and pasted this from a post I put on another thread a few days ago. Made a couple of changes. Hope it is helpful.

I just did quick web searches to find out each of their addresses.

Will try to find time to cut and paste them all onto another post, in the near future. (Have been spending time trying to get CCSVI info. sheets made to hand out at the upcoming MS walk. Yikes! So much to do.)

Make a few changes to reflect your own situation and opinion...then copy and paste the same letter to:

your MLA, (Member of Provincial legislature)

MP, (Member of Parliament)

Health Ministers (federal and provincial)
,
Heath Critics (federal and provincial) (reps. from opposition parties)

The federal and provincial leaders of opposition parties.

Send your letter to Health Canada

Oh, and don't forget the Prime Minister!

I am serious! These people are paid to work for you!!

You may also want to point out that this is a matter of great urgency to the approximately 75000 Canadians suffering with MS, and particularly to those diagnosed with the primary progressive disease who are often subject to rapid and irreversible decline.

Here is what I emailed to the Prime Minister

Dear Mr Harper:

You are no doubt aware that recent scientific studies indicate that more that half of persons suffering with multiple sclerosis, also have a serious vascular condition called Chronic Cerebrospinal Venous Insufficiency, or CCSVI.

This is a vascular condition in which venous circulation from the brain is seriouly compromised. The results to the brain are inadequate oxygen perfusion to brain tissue, and other damage to the brain related to compromised blood circulation.

The condition can be diagnosed by means of doppler ultrasound, MRV, and veinogram. All of these diagnostic techniques are safe and have been in use in Canada for many years. There is nothing experimental about these diagnostic procedures.

Treatment is generally done by balloon veinoplasty. This procedure has also been carried out on veins in other parts of the body for many years in Canada. There is a very small, and well documented risk associated with this procedure. It is inexpensive, and done on an outpatient basis.

You may be aware that Canadians have been travelling out of the country to receive this necessary medical screening and treatment. Canadians have been treated in the United States, Poland, and Germany and India.

Many Canadians living with multiple sclerosis are not able to afford to travel outside of the county to receive medical care. They are being told to wait. Waiting for a person with multiple sclerosis means continuing to accumulate possibly irreversible brain damage. This is not satisfactory.

Last week the government of Kuwait, after studying the available published scientific research, decided that all persons in Kuwait living with multiple sclerosis should be screened for this serious vascular condition, and those found to be in need of treatment will be treated.

Please contact me at your earliest convenience to tell me what steps are being taken to start the immediate screening of the 75,000 Canadians for CCSVI, and the immediate treatment of those most in need of vascular intervention.

I can be contacted by return email or at the following address or telephone number.

name and contact info removed for posting
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Postby merida » Sat Apr 17, 2010 6:26 am

Thank you Brightspot! I appreciate it.

I'm going to tackle it this weekend. Let's hope others do as well as we can make a difference!!!
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