Well, it took about 16 months, but today I received an email and phone call from our Ministry of Health with the news that with a diagnosis of DMD, we can now apply for Exceptional Drug Status for Deflazacort.  This is a pretty simple process here, basically having one of the kids' doctors sign a form confirming the diagnosis and that they're taking Deflazacort.

 

I'm sure my contact there was getting tired of hearing from me since I first requested in January 2010.  I believe there was a lot of discussions I was not part of, between the Ministry of Health and our Neurologist, as well as various papers being reviewed. 

 

This won't make or break us financially, but its the principle of it.  Steroids are the only option we have right now.  The studies we have don't question if we should use steroids, only the best time to start them.  Its a small win, but its still a win.

 

So for those of you in Saskatchewan, start talking to your doctors.  For those of you outside Saskatchewan, I'd encourage you to get in touch with your province's Ministry of Health and start the ground work.  Use Saskatchewan as an example of a province covering Deflazacort!

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Replies to This Discussion

We live in PEI, and we get Deflazacort from the IWK hospital in Halifax.  We are paying $52 for a two month supply.  That seems pretty cheap to me, does that mean that it is covered already by someone?

 

Jennifer

Hi Jennifer,

That seems close to what we pay right now for Hayden, so I'd say no its not being covered currently.  However, according to the Neurologist, that will likely go up to around $100/month or more (per child) as they grow.  To me, it was more about the principle of the thing.  This is an accepted drug for DMD, and thus should be covered by our provincial health care.

Great news, hopefully Ontario follows suit!!

 

Thanks for the information.  I will talk to our Doctor when we see him in June.

 

Jennifer

Andrew Kerr said:

Hi Jennifer,

That seems close to what we pay right now for Hayden, so I'd say no its not being covered currently.  However, according to the Neurologist, that will likely go up to around $100/month or more (per child) as they grow.  To me, it was more about the principle of the thing.  This is an accepted drug for DMD, and thus should be covered by our provincial health care.

Hi!

 

I agree with Jennifer - it is not just ABOUT MONEY. It's how goverment accept our kid's condition or not. Who should care that is on trial as a medical. It's already about 30 years as trial and not "official". Kids have DMD. It's real for them and for us too. Life is not trial at all.

 

Sorry for emotional respond

Just for those in other provinces, I don't think you should wait for your province to cover it, but instead approach your Department of Health to see what the process is to get it approved.  In my case, it basically involved the department and our Neurologist communicating back and forth while I continually asked for updates.  Tell your province to talk to Saskatchewan, and that might help speed up the process.

We get ours from the IWK too.  We pay $78 every 100 days, plus shipping.   Money isn't everything, but it does start to add up with all of the other stuff we buy, the vitamins and minerals and supplements, and now we need to get a couple new rails for the house, and unless Ataluren really slows things down, we'll be looking at a new step/deck with a ramp, and so on...  Not that I'm complaining, but every little bit helps and if we get this now, it should help with other drugs later. 

 

Jennifer:  Does your son see Dr. Dooley too?

 

I will try to see about it for NS. 

 

Thanks for your hard work and information Andrew.

 

Angela

I've contacted my MPP who checked with the Ministry of Health in Ontario. We are trying to figure out whether there is anything in progress to approve deflazacort in Ontario. If not she is going to find out what needs to happen and we'll take it from there. I'll keep you posted.

 

Debra

Yes, Lucas sees Dr. Dooley as well.  We just got back from seeing him today.

Jennifer

Angela Bourgeois said:

We get ours from the IWK too.  We pay $78 every 100 days, plus shipping.   Money isn't everything, but it does start to add up with all of the other stuff we buy, the vitamins and minerals and supplements, and now we need to get a couple new rails for the house, and unless Ataluren really slows things down, we'll be looking at a new step/deck with a ramp, and so on...  Not that I'm complaining, but every little bit helps and if we get this now, it should help with other drugs later. 

 

Jennifer:  Does your son see Dr. Dooley too?

 

I will try to see about it for NS. 

 

Thanks for your hard work and information Andrew.

 

Angela

Andrew do you have your vitamins written on prescription also, I live in Regina, and my sons calcium and vitamin D are covered by SAIL so are totally free as well as his tylenol, wet wipes, and any other things we need for him

Hi Betty,

I'll have to double check with my wife.  We were getting their Vitamin D and Calcium covered, but last time we went in, the pharmacy said it was no longer covered.  

Betty-Anne Heft said:

Andrew do you have your vitamins written on prescription also, I live in Regina, and my sons calcium and vitamin D are covered by SAIL so are totally free as well as his tylenol, wet wipes, and any other things we need for him

We are in Manitoba where deflazacort isn't covered, but are able to have all of Joshua's supplements prescribed now.  They aren't covered by any insurance, but at least we can claim it at the end of the year.

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