Daily/Weekly Thoughts

CTV News Clip - Spinraza for all


Emmett loved seeing himself on TV. He is a very bright and alert little kid, but I really cannot say that he knew that he was on the provincial news. He did, however, absolutely want to have the clip reviewed and watch it over again and again. He also recognized some of the other kids in the video - some he's met before while for some others this was the first time. 

Emmett fits the recommendations that are currently being reviewed by local provincial government here in B.C.  This is not merely a disease that affects children. Type 4 is adult onset Spinal Muscular Atrophy. Type 3 may not be identified until into the teen years - although it is usually evident at a much younger age. Then there are Type 2 youngsters who are identified early by the fact that, while they can sit up, they are unable to walk. As you can imagine, there are a range of ability within each of these types. Emmett is Type 1. Not all Type 1 individuals will meet the narrow recommendations.

The teacher (and perfectionist) in me wants to clarify. Kids and adults with SMA have perfectly fine muscles. The problem is that the message between the brain and the muscles is not transmitted. Thus the muscles atrophy. This drug, Spinraza, essentially creates a pathway that allows this message to get to the muscles. This is why this drug is so fantastic. And so fantastically expensive. But when governments, most importantly our Canadian government, around the world start discussions with Biogen, they will be able to get the price to a much more realistic figure.

This is why we need and want you to write your local MPP and your province's Minister of Health. See yesterdays post for that information.

Emmett has a couple of cameo's in this clip. Watch for him! He was asked for an interview but he declined! He just wanted to play!



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