Ontario Will NOT Fund Clinical Trials

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

Ontario Will NOT Fund Clinical Trials

Postby Blaze » Wed Jul 28, 2010 2:08 pm

Ontario Premier Dalton McGuinty has just announced Ontario will NOT fund clinical treatment trials of MS--unlike Saskatchewan, which yesterday announced they would. McGuinty and Health Minister Deb Matthews have said more scientific evidence is needed. How do we get scientific evidence without the trials?

I can't help but believe the letter of MS Society to all Ontario MPPs advising them NOT to fund CCSVI treatment has influenced this decision.

Hopefully, the Charter Challenge through Angioplasty for All will get their attention.
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Postby Hockeydad » Wed Jul 28, 2010 6:44 pm

I saw in an interview that he's sympathetic to the cause as his uncle was an MS'er. There's a Premier's conference coming up in August and the Saskatchewan Premier has said that he'll bring it up then. Dalton's on his way out and you can bet the opposition will smell an opportunity to nail him in the press.
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Postby Fernie12 » Wed Jul 28, 2010 6:54 pm

Here's a link to the Globe and Mail news story:
http://tinyurl.com/2b7rbf9
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Dr Sandy MacDonald's Trreatment Trial

Postby eveable » Wed Jul 28, 2010 7:21 pm

Interesting announcement by Dalton esp since Dr Sandy MacDonald at Barrie Vascular Imaging has anounced his treatment trial starting in the fall. In Barrie, Ontario.
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Postby Blaze » Thu Jul 29, 2010 4:13 am

Actually, Eveable, Dr. McDonald does not yet have a definite timeline for his study. Dr. McDonald still requires approval and funding.

It would have been great if Ontario had stepped up and funded one of it's own who is such a leader on this.
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Postby Hockeydad » Thu Jul 29, 2010 5:40 am

That"s true Blaze. I spoke to the Barrie Clinic yesterday. They are waiting on their approval to begin. They already have their team of doctors and support staff trained and ready to go. It just sucks that we have to sit and wait on some bureaucrats. BTW, who is this head of the CMA; Paul Hebert? In his interview on CTV he talked about how dangerous the procedure is and we'll be reading about how many people died from doing it!
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Postby Blaze » Thu Jul 29, 2010 5:57 am

Hockeydad: I wonder if Paul Hebert has read the reports of 58 cases of brain infections and 12 deaths from Tysbari. Yet, docs are continuing to prescribe it.

Having responsible, trained physicians do the procedure is the best way to avoid or minimize risks of complications.

As Dr. Sclafani said when he was quoted in New York Times, this is like women seeking back alley abortions in the 1960s.

Instead, why are we letting the reputable ones like Dr. McDonald proceed? Or, at least give him and others the funds to do the research.
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Postby 81Charger » Thu Jul 29, 2010 8:18 am

I have also heard that Nova Scotia won't finance anything either.

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Sandy MacDonald

Postby eveable » Thu Jul 29, 2010 3:25 pm

That was my point. Sandy MacDonald is waiting for funding and approval that he will now never get. I have people in my MS group waiting for that trial to start. Maybe when our charter suit gets going Dalton may have a change of heart.
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Postby scotland » Fri Jul 30, 2010 7:58 am

Hi
I don't think the premier of Ontario or the federal Health minister have a clue what they are looking at. Easy testing, potential easy treatment,
massive return in quality of life and drug funding.

They have this glazed look, playing the worlds largest game of " not it"

It would be perfect if Dr MacDonald could get approval for treatment on
a pay per user basis. It would beat going all over the world, and we could be monitored and go for follow up testing.

I have said it before here, the money spent on the G20 on security could have
treated every Canadian with MS at 25,000 each.
Better to suck up to 20 world leaders, than 80,000 canadians.
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Postby Hockeydad » Fri Jul 30, 2010 8:09 am

I do believe that you can get any follow-up done by BVI. Angela can still scan you to see if you have re-stenosed.
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Postby thornyrose76 » Fri Jul 30, 2010 2:24 pm

The Government of canada has blood all over its hands, this is going to come back and bite them in the a$#!
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Postby tazbo » Thu Aug 12, 2010 8:11 am

Re: Ontario should ...I see this was same as earlier post...sorry.
http://www.thisisms.com/ftopict-13220.html
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Postby 1eye » Thu Aug 12, 2010 8:48 am

I think the key words there are "may use" and "should be". These are weasel words. In the Internet Engineering Task Force's series of thousands of documents called RFCs for Requests For Comments, there are explanations and the mandate that all these documents capitalize to disambiguate the words MAY MUST and SHALL. The only ones that are important are MUST and SHALL, MAY only defines good or recommended practice. If anybody fails too do a thing, and there is no law saying MUST or SHALL, or they do a thing and there is a no law saying MUST NOT or SHALL NOT, well I guess they are OK. This is a good guideline, and obviously one Ontario does not care for.

Incidentally they are a Liberal government, and the Federal Liberals have a few hard advocates for the Liberation procedure in Dr. Kirsty Duncan, the Liberal health critic Dr. Carol Hughes, and M.P. Peter Julian from B.C.

The Liberal Leader, though wishy-washy on most things, I believe supports us. Why the Provincial Liberal party is so different can only be because of interest groups and lobbyists. I don't think they have quite the constraints on their behaviour that Federal Liberals do.

But they are all politicians, and I think if the email, letter, and word-of-mouth campaign that saved Barb Farrel were done again, to save the hundreds at death's door in Canada (not the thousands in the US, one step at a time), it might succeed.
"Try - Just A Little Bit Harder" - Janis Joplin
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'MS' is over - if you want it
Patients sans/without patience
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Postby jimmylegs » Thu Aug 12, 2010 2:02 pm

maybe they're pulling a wait-and-see now that sk took the initiative.
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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