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Canadian Families

Members: 54
Latest Activity: May 17, 2016

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New trial coming to Winnipeg

Started by Joshua's mom. Last reply by Joshua's mom Jun 21, 2013. 7 Replies

Who pays for your deflazacort?

Started by Angie Evans. Last reply by Andrew Kerr Apr 2, 2012. 7 Replies

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Comment by Andrea Cleary on May 29, 2014 at 10:30pm

I think what I have discovered today is that the MPs and Health Canada cannot really help us right now because of how the "framework" and the drug approval system is currently set up. It just isn't working well. It's through the Orphan Drug Regulatory Framework that we will get what we need regarding new medications. As patients and care-givers, we have to demand this gets passed (please sign the petition if you haven't already), and Bill C17-Vanessa's Law, which calls for post-market analysis and on-going collection of data about safety and appropriate use. Will learn more about that tomorrow!

Comment by Amy Cavalier on May 28, 2014 at 4:48pm
I am on board. Any suggestions as to what I should write? I am kind of new to this. I have contacted my MP before regarding an accessibility issue at our school, without much luck, but I will contact him again.
I'm sure we can get more support from members of FB - Duchenne Canadian Connection.
Comment by Andrea Cleary on May 28, 2014 at 12:16pm

We need at least one politician who can keep reminding the House of Commons that we need action on this. We have to hit home the point that this can happen randomly to anyone's little boy and the profound degree of disability we are facing and the cost to society. I'm willing to show up at a meeting and use  my 14-yr old as an example of what prevention can do (drisapersen trial on drug for 2 years) and compare it to a child who has not had the benefit of a treatment. Because the general public looks at my son and sees him doing pretty good and wondering "what is she whining about?".

Comment by Andrea Cleary on May 28, 2014 at 12:06pm

I should also say that I was granted a registration scholarship by CORD to attend, and there is also a travel scholarship you may apply for if the meetings are further from where you live.

Health Canada has given me 2 different answers regarding the Special Access Program. One answer was that insurance would not cover the cost (provincial or private), and we know how exorbitant the cost of some of these drugs will be, especially at the very beginning, and that it is up to the drug companies to allow access for the SAP. The other answer was that our sitautation with DMD (of unmet need) is specifically why SAP was set up and we could demand that the companies allow us access and they would cover the cost (or the majority of it), as they could continue gathering data on our kids who would be helping the pharmas to get approval for their medication, for which they would be making a healthy profit on the open market and with insurance coverage. Worries me to get these opposing answers from our government.

Comment by Debra Chiabai on May 28, 2014 at 10:28am

Hi all,

I am very involved with Muscular Dystrophy Canada and have been involved in the CORD advocacy days over the past few years where people who have an affiliation with a rare disorder meet with MPs in Ottawa to talk to them about the importance of this legislation. I am so involved because I also fear the possibility that drugs will become available that we won't be able to access. CORD has a good summary of what advocacy needs to take place in order to make this happen. There is an Orphan Drug Regulatory Framework that is with Rona Ambrose for her approval. It is one step away from being implemented and this year CORDs message to MPs was that this needs to be approved. You can find out more info here: http://www.raredisorders.ca/currentIssues.html

 There are also CORD consultations going on across the country. You can find out dates places on their website under their calendar. 

Comment by Andrew Kerr on May 28, 2014 at 10:18am

Andrea,

I should have mentioned that I'd love to hear anything you find out at the CORD meetings.  Glad someone from our community is going to be there.

Comment by Andrew Kerr on May 28, 2014 at 12:25am

I hadn't talked to our local MP, but I did contact the Federal minister of Health asking for an update on their Orphan Drug Framework that seems to have not gone anywhere in 18 months or so.  I didn't get much back, just a basic letter saying they were working on it.

With the trials going on and the promising results from several different drugs, that's been my main concern is that if the FDA gives accelerated approval in the US, how long are we going to have to wait here in Canada for access to the same drugs.

Comment by Cosmin F on May 27, 2014 at 11:19pm

Thanks so much Andrea. I'm starting up a list. I hope we will add more names; the more, the better.

Please keep us posted on how things go at CORD.

Comment by Andrea Cleary on May 27, 2014 at 9:54pm

Cosmin, I did contact our MP Sadia Groguhe, got me nowhere. Spoke with Tyrone Benskin MP and Senator Don Meredith who met Simon and another DMD boy (who also happened to have been in the drisapersen trial) at a Scout award ceremony in Ottawa in March. Both seemed very personable and Mr. Benskin has a nephew with a rare disease, so very understanding about that realm. I spoke with Dr. Marla Speigal of MDC who is looking into the Orphan Drug Regulatory Framework and the Special Access Program, etc.This had lead me to being invited to the CORD meetings (Can.Org. for Rare Disorders) in Montreal Thur and Fri. Not sure if I will learn anything new or useful, but I feel I need to understand how things are done (or not) to try and figure out what needs to be changed and how. 

Comment by Cosmin F on May 27, 2014 at 8:56pm

Question for other Canadian families: Have you ever contacted your MP? If yes, would you be willing to contact them again?

Reason we ask is we just met with our MP, Elizabeth May, and Elizabeth would like to bring forward a number of things on behalf of our community (one such initiative is increasing the tax credit for wheelchair vans); More MP voices in Ottawa would mean higher likelihood of success. Therefore, could we count on several champions in Ottawa?

One other idea is the MD Care Act; there's no such equivalent in Canada, and while we should be realistic about this happening in the great white north, I think we should at least bring forward this idea; we are also discussing this with Muscular Dystrophy Canada. Next year is federal election year, and the budget will have been balanced, so potential for new measures in the budget. Just an idea.

Thoughts? Suggestions? MP names?

Thanks.

 

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