CANADIANS ASK YOUR MP TO HELP CANADA FOLLOW KUWAIT RE CCSVI

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

ms and $

Postby carfranki » Sun Apr 11, 2010 12:11 pm

HAS ANYONE CRUNCHED THE NUMBERS ON HOW MUCH OUR GOVERNMENT's 'TIMIDITY' IS COSTING MEDICARE AND OUR SOCIAL SERVICES?
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Postby PCakes » Sun Apr 11, 2010 12:27 pm

...easy math would be....
Approx $60k/ year x MS population x forever.. versus.. Approx $50k for diagnosis/treatment/postcare x MS population x 1

simplistic, maybe, but this is the joy of CCSVI...:)
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Will a letter like this work?

Postby 1eye » Sun Apr 11, 2010 2:00 pm

To My Health Minister:

Having had MS for many years, there is a an MS statistic which I really have to consider. The mortality rate translates to life expectancy. For MS, it is shorter than the surrounding population. Why? I think this fact has been deliberately under-reported to cover it up. Maybe I'm just paranoid. The fact remains, although with my heart disease I may die of a cardiac arrest, if I don't, MS will be my early executioner. I am concerned that my heart disease will combine with reflux and strictures in my neck, in a deadly way. I have already had one heart attack, last Spring. They put in stents.

I think if I have enemies, they are just waiting for me to die, and stop bothering them. Not if I can help it. I am 56. If I would be, for non-MS reasons, due to pass away at 66, then I am living on borrowed time now because of my MS. My maternal grandfather died at 50. My maternal grandmother died at 67. MS kills. It's an emergency. If I can't get treated on a first-come, first-served basis, or a randomly selected basis from a list that includes every Canadian with MS, regardless of age or disability (since we don't discriminate against the old or disabled) I believe I have a moral duty to myself, my wife, and my kids, to use any means at my disposal. If that means trying to jump a scientific testing queue which may take more years, and get what may end up being only a standard endovascular balloon venoplasty, so be it. I can't wait, more than they can't wait.

Will the Canadian health care system work for me, or should I go to a wealthy Arab nation like Jordan or Kuwait, or try my luck in Poland, India, Australia, or one of the other civilized nations where this operation is not being blocked by special interests? Or does your government prefer queue-jumpers? I can do that too, if I have to.
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Postby Brightspot » Mon Apr 12, 2010 2:40 pm

1eye and others, please let us know if you receive any replies to your letters, or requests for meetings.

Have received a note from Adrian Dix (NDP Provincial Health Critic), saying that he and Jenny Kwan (MLA) are trying to decide whether to bring the matter up in the legislature before or after the discussion on health care budget.

I sent him some data on the cost of MS to Canada which I received from someone in Ottawa from msliberation.

I suggested that they compare the cost of not treating CCSVI to the minimal cost of screening and treating it.

If private, clinics in the United States can provide screening and treatment for around 10,000 and make a profit, then our non profit, public system should be able to manage it for much less.
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cost/benefit

Postby 1eye » Mon Apr 12, 2010 8:42 pm

They always use a ratio. Help them recalculate using the benefit in terms of prevented and healed disability, and returns to work, and savings in LTD payments for insurance companies, and removal of medical cost deductions from taxes, etc., and the disability tax credit.

Worth the risk to me. Should be worth the cost to the taxpayer, many times over. The ratio will be way less than 1. Microscopic.
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Postby Villagemaid » Mon Apr 12, 2010 9:48 pm

Is there any way for someone to post a blanket letter on here that everyone could use?

I am good at writing letters, but just a little overwelmed when it comes to being precise and concise....lol.....

It would really help if we could copy-edit-paste.....

Thanks!

-VM-
35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos
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sample letters

Postby Brightspot » Wed Apr 14, 2010 12:29 pm

Hi Villagemaid Check your private mail

Have posted sample letters along with links to find your appropriate MP and MLA. There are a couple of letters from people with MS and one from someone without. The thread / post is called Canadians Write a letter to a politician today about CCSVI. It may be a few pages down.

Just copy and paste to your heart's delight. Make a few changes to reflect your own situation and opinion...then copy and paste the same letter to your MLA, MP, Health Ministers (federal and provincial) , Heath Critics (federal and provincial) 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 today;

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
Last edited by Brightspot on Wed Apr 14, 2010 1:58 pm, edited 4 times in total.
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Postby Villagemaid » Wed Apr 14, 2010 12:30 pm

Thanks SO much Brightspot!!! :D
35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos
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Postby iggy » Fri Apr 23, 2010 5:16 pm

Congratulations to Calgary CCSVI for their comprehensive plan of action! Let's all get on their bandwagon - if Kuwait can do it, so can we!
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