CTV interview

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So over the Christmas holidays we were approached by CTV to do a story on Spinraza (a treatment for SMA) that was given FDA approval on December 23rd.

http://www.ctvnews.ca/health/outrageous-price-approval-a-concern-for-drug-to-treat-deadliest-genetic-disease-afflicting-children-1.3292642

Some backstory…we applied for the Type 2 study out of London about a year ago with Dr. Campbell but were unsuccessful (Stella is too weak of a Type 2, but also too strong to qualify for a Type 1. Extremely frustrating but understandable due to the rigour of the trials to get approval.). We have also been following families all over Canada and the US who were on the trial and seeing fantastic results – children dosed before symptomatic show the most stunning results from sitting, crawling, and even walking. Older children seem to have more energy, more strength, and more movement.

As of right now, Health Canada is deciding the safety of its use here. We have been told to expect a decision in July/August. Then, as health care is provincial, each province will decide how much (if any) of the cost they might cover. Then, unless the province covers it fully, we will have to see if insurance will pay for it.

We still have more questions than answers and the waiting is extremely difficult. Although we are thrilled for our SMA families that are receiving the treatment already, we are heartbroken waiting for our turn. We are hoping maybe early 2018 at this point, but we still aren’t sure. We will keep you posted.

Please note, we have not shared any of this with Stella as we don’t want to get her hopes up, and feel there is no need to burden her with this stress until we know more.

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