Canada's MS patients are owed an explanation

erinc14 · Post by **erinc14** » Tue Jan 04, 2011 6:30 am

By Ujjal Dosanjh And Kirsty Duncan, Citizen Special

Finally, like many MS patients, we are frustrated with the government, and want an investigation into how this file was handled so badly: how special interests co-opted science; how an organization that was supposed to steadfastly advocate for MS patients flip-flopped on its position; how process was used not to do science; how conflicts of interests went undeclared; how a pioneering surgeon had to risk his reputation; how MS patients were forced to fight the system; and how the minister repeatedly failed to advocate on behalf of suffering Canadians, particularly with regard to followup care -- especially when we began raising the issue in July with officials?

And ultimately, who was responsible for repeatedly failing to take leadership, and who must be held accountable for the abject abdication of responsibility?

Read more: http://www.ottawacitizen.com/health/Can ... z1A4j2HiZD

Cece · Post by **Cece** » Tue Jan 04, 2011 7:26 am

One Canadian neurologist, who had the liberation procedure, said to me, "if we had collected the evidence in a registry for the last many months, would we still be calling these anecdotal stories?"

In August, the Canadian Institutes of Health Research, in collaboration with the Multiple Sclerosis Society of Canada (MSSC), convened a "meeting of top researchers ... with a special emphasis on neurovascular issues including the recently proposed condition called CCSVI."

Sadly, it was an expert group with no experts in the imaging/treatment of chronic, cerebrospinal venous insufficiency (CCSVI).

erinc14 · Post by **erinc14** » Tue Jan 04, 2011 7:45 am

Blaze · Post by **Blaze** » Tue Jan 04, 2011 9:27 am

Great editorial. However, I don't want an explanation. I don't want an investigation. I want treatment--right here in Canada.

BELOU · Post by **BELOU** » Tue Jan 04, 2011 9:36 am

Blaze, I'm feeling that way too. Unfortunately I don't think that it will be possible before a couple of years here in Canada. I anticipate that all (100%) studies done by the MSS (Canada) and MSS(US) will be negative. I'm too pissed off to be positive here.

Blaze · Post by **Blaze** » Tue Jan 04, 2011 9:51 am

BELOU wrote:Blaze, I'm feeling that way too. Unfortunately I don't think that it will be possible before a couple of years here in Canada. I anticipate that all (100%) studies done by the MSS (Canada) and MSS(US) will be negative. I'm too pissed off to be positive here.

I think a projection of two years is optimistic. The way things are moving, I anticipate it will be much longer than that.

I think your prediction about MS Canada studies is probably accurate.

Let's hope the recent public opinion poll by Angus Reid which shows 82% of Canadians think treatment should be available here may have some influence. (well, I can dream, anyway!).

erinc14 · Post by **erinc14** » Tue Jan 04, 2011 12:43 pm

If the media were doing their job this wouldn't be happening.

thornyrose76 · Post by **thornyrose76** » Tue Jan 04, 2011 1:26 pm

Forget it, Canada under the Harper Gov't is a useless, hopeless case on this matter...

"Ooohh say can you see!!!!!!!...."

Hooch · Post by **Hooch** » Wed Jan 05, 2011 10:12 am

If Angioplasty for All gets enough money the challenge to the Charter may make this waiting period for treatment quicker. Anyone out there have friends with money who are passionate about this procedure?

Blaze · Post by **Blaze** » Thu Jan 06, 2011 1:33 pm

Hooch wrote:If Angioplasty for All gets enough money the challenge to the Charter may make this waiting period for treatment quicker. Anyone out there have friends with money who are passionate about this procedure?

Even if you don't have lots of $, AFA has established a $20 per month club to make it easy for folks to donate. Larger donations are, of course, also welcome! AFA does not yet have charitable status for income tax, but they're working on it.

Tim Donovan, who heads up AFA, is planning a cross-country tour to raise $ for the Charter Challenge. Tim had his own procedure in Albany last summer. He got his driver's license back after a comprehensive road test just before Christmas.

erinc14 · Post by **erinc14** » Thu Jan 06, 2011 1:40 pm

Brightspot · Post by **Brightspot** » Thu Jan 06, 2011 11:44 pm

Great article!! Thanks for posting the link.

Dr. Duncan has been working hard to assert the rights of persons with MS in Canada to receive vascular medical care.

Glad to know Ujjal Dosanjh is also taking a stand.

Let's keep demanding that our elected representatives take action on our behalf.

Meanwhile, I agree with the above comments that litigation may be the most effective way forward.

Thanks to all of those involved with the efforts of Angioplasty for All!!