While there is no treatment for Duchenne Muscular Dystrophy, steroids have shown to extend the physical abilities of these boys. They are able to walk longer which in turns extends the onset of problems related to wheel chair use like scoliosis. The current steroid of choice in Canada is Deflazacort.

There have been many papers written and studies done showing that steroids have a positive affect on their condition. There are serious side effects to steroid use, especially in children, and these should be discussed with the entire medical team before starting on any steroid.

A recently released paper entitled "The Diagnosis and Management of Duchenne Muscular Dystrophy" doesn't question if steroids should be used, only when they should be started. The general consensus seems to be that boys should be placed on steroids when their physical abilities start to plateau. That is, they are no longer progressing physically, generally between the ages of four and six.

Currently, the BC Children's Hospital covers Deflazacort for boys with DMD. Saskatchewan does not. We are submitting a second letter to the Minister of Health, the Honourable Don McMorris requesting that the province cover this drug for boys with DMD.

While our first concern is with our home province of Saskatchewan, we believe this drug should be covered nationwide.

Update: Feb 24, 2010
The response from the Minister was to speak with a representative from the Drug Plan and Extended Benefits Branch of the provincial health department. She informed me of the proper process in these situations. A doctor needs to make the request in writing, with studies, reports, or other documentation to back up the request. I've sent a letter to the neurologist that's looking after our boys. Hopefully he'll agree to write the letter.

Update: March 28, 2010
The neurologist has agreed to speak with us about writing the letter when we meet with him in May. Hopefully we'll be able to convince him to write the letter.

Update: May 17, 2010
We met with the boys' neurologist last week and he has agreed to send a letter to the province's health department. We look forward to hearing more.

Update: May 2, 2011
Well, its been nearly a year, and though I've continually asked for updates and status on my request to get Deflazacort covered, I've stopped receiving any responses to my inquiries. Once things settle down from the walk that's coming up VERY quickly, I'll write my local MP, and the Minister of Health again.

Update: May 11, 2011
I received an email and phone call from the Ministry of Health today. We can now apply for Exceptional Drug Status and Deflazacort will be covered for all children in Saskatchewan with Duchenne Muscular Dystrophy.

Its taken a long time, but I'm happy to say, we're there. I'm sure my contact at the Ministry of Health was beginning to dread my emails and phone calls, since I've been somewhat persistent on this issue since I first learned that Deflazacort wasn't covered. While this isn't a huge expense to us right now, it can add up, especially as our boys get older and the dosage increases. Other families, that may not be in as good shape financially will definitely see some benefit from this though.

For those interested, the process to get Exceptional Drug Status is to have your doctor fill out the EDS form. You can find more information about it here: http://www.health.gov.sk.ca/exception-drug-status