Letter to the Editor

Trip Start Jul 17, 2010
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Trip End Jul 26, 2010


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Flag of Canada  , Saskatchewan,
Tuesday, August 10, 2010

I sent this letter to newspapers across Canada.


Liberation Treatment Should Be a Non-Issue

Is dying better than angioplasty? Is progressively getting more disabled better than angioplasty? Is going blind better than angioplasty? Is lying in bed missing your kids growing up better than angioplasty?

We all know the choices we would make given these alternatives. Here in "democratic" Canada these choices have been taken away from people who have Multiple Sclerosis. Our federal and provincial governments have prevented doctors who want to help people from fulfilling the oath that they took when they became doctors.

Angioplasty is a well known, standard medical treatment. It is not a drug and clinical studies are not needed to prove that it is safe. The approximately 1,000 successful liberation treatments done to date around the world should be enough to encourage the Canadian health-care system to allow the treatment as an option to patients.

The arguments against the Liberation Treatment are: “it hasn't been proven to help people with MS”; “not all the clinics are using the Zamboni method”; “Stents are dangerous in veins”; “we only have anecdotal evidence of the results”; “we don’t know the long term impact”; “the veins can re-stenos”; “not everyone who has MS has CCSVI”.

If we don’t do the Liberation Treatment and track the results we will never be able to prove anything. There is a global community of doctors that are performing the procedure, sharing their experiences and learning and improving together. We are falling way behind because we are not even in the game! Thousands of dollars are leaving Canada because we refuse to listen. The MS Society is not listening to its members; the provincial and federal governments are not listening to their constituents; the health care systems are not listening to their patients. Brad Wall is the first person in power who has stepped forward to say we need to do this.

Pharmaceutical companies control the medical research that is done because they control the money. This procedure does not need pharmaceuticals so there is no money to do the procedure. Or so it would seem! Many people with MS: take drugs that cost over $20,000 a year – paid for by insurance companies and governments; are on disability – paid for by insurance companies and government; see doctors regularly – paid for by governments; have MRI’s – paid for by governments; don’t work and therefore don’t pay income tax and may be on social assistance – paid for by governments.

If we could change this scenario in just a few of the thousands of Canadians with MS we could easily pay to do the procedure, track the results and become part of the global medical community that is sharing information. We don’t need to do everything ourselves. We don’t need to prove everything ourselves. We could start with the many Canadians that have already had the treatment. Follow them, collect the data about them.

What we need to move this forward is:

-         Introduce compassionate legislation so that anyone can get medical treatment for compassionate reasons

         Allow the Canadian doctors who’ve already been trained to start doing the Liberation Treatment

         Allow other interested vascular specialists and radiologists to get the training that is needed to ensure they know how to test for CCSVI and do the angioplasty

         Set up a tracking system to gather data about everyone who is tested and treated.

         Include open minded neurologists to follow their patients before and after treatment

         Connect with the global community of doctors to share information

If governments really feel that we can’t afford to do this, call it an elective procedure and charge a fee for having it done. At least the money would stay in Canada and benefit Canadians.

Most importantly, allow us to make a choice about our life. Don’t make the choice for us because you’re scared, sceptical, or think you know best.

Verna Mang

I’ve had the procedure and I’m improving for the first time in over 14 years.
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Comments

Richard Leclair on

Very well said, nothing else to add, maybe it is to easy to understand that's why they dont understand it.

Reggy29 on

I had the treatment and saw an immediate improvement in my hearing,my standing strength,and swallowing.None of these were treatable by drugs!

Warren Stefanuk on

Very thoughtful and articulate article. I accompanied a family member to Poland. She had an instant and miraculous reprieve from MS.

I am baffled by the misinformation being published by MS Society and Neurologists. I suspect that big pharma is largely behind it as they are panicking about the possible loss of sales (8.5 BILLION ANNUALLY IN MS DRUGS).

Brenda on

Excellent letter, it covers the main issues!

Melissa on

I am going into week four of being treated for CCSVI, I rode a bike today, I danced at a birthday party, i have more strengh all day and not tired, I have no more pain in my foot, no more leg spasms in the morning, , I have not parked in the disabled parking or have used my cane in four weeks. I was able to stand and pass out cake for the first time in eight years, at my daughter's birthday party and take pictures. My quality of life has improved so much, why not give every person this chance...??

Michelle Walsh on

Verna, I was in tears reading this amazing letter you wrote because this is our lives and you hit the nail on the head here with this one pretty lady!! Going to Bulgaria has saved my life too and that is where I am going back to help THEM with their research its the least I can do for them helping me:-) By the time CANADA gets their clinical trails rolling here the rest of the world will have all their research done and published in medical journals. As the old saying goes "you snooze you loose" that is us here in Canada.

Erica on

Well written and great points; I think I'll print this and show it to my doctors. Thank you!

Bev Bentley on

Thank you for your wonderful letter. I hope that you get a ton of responses from the newspapers. So well put and heart felt and factual, simply brilliant. Canada had better wake up because we have all but lost our former reputation of having one of the best MS Clinic's in the world. Imagine, they have not even started their research which was suppose to have started in June!!! And the MS Society, well they are talking "nice" and doing nothing!! Thank you for this letter, thank you!!!

Pat Kimball on

Great letter and thank you for the time and effort put into it. I'd like to copy it and send it with backup to letters I wrote and sent a week ago to our Premier and various government Ministers and representatives. It will be accompanied with the lists of signatures I am currently getting. We must not stop.

Verna Mang on

You can copy this letter and send it wherever you want. Feel free to spread the message.

Elen Reid on

Just got home and have enjoyed reading your blogs. How wonderful it must be to see improvement. Will follow your saga.

I forwarded your email to a friend with MS. Sue also has visible venus involvement. Her hands and feet are always cold, blue and now numb. She grew up in Vancouver so another westerner with MS.

Covering Letter on

This blog is really awesome . thanks for posting.
covering letter

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