My Quest for Spinraza, the Elixir of Life

My Quest for Spinraza, the Elixir of Life

One would think it might be easier to get a lifesaving medication, but it’s not. 

I pursued Spinraza (nusinersen) for a time, only to stop. I’ve been keeping quiet about it because what if I don’t get it? It’s possible, even though I live in Canada. Many people assume that treatments like Spinraza are easier to access here, but even our healthcare is problematic.

My doctor started the paperwork a couple of months ago. My insurance provider sent the application back because I need a motor function test, known as a Hammersmith. Now I have to find a physiotherapist because the hospital I normally go to doesn’t offer physiotherapy. For some reason, the hospital is unable to refer me elsewhere. I can’t use the physiotherapists in my town, either, because they aren’t specialists. 

So far, that’s the only hoop I’ve had to jump through. It hasn’t been easy. And I have a feeling there will be even more hoops. According to other people, this isn’t the end, although I wish it were. 

I’m not even sure if they could inject Spinraza because of my scoliosis. My back was fused into a straight position via spinal fusion. Spinal fusions can affect procedures such as lumbar punctures, which is the primary vehicle of delivery for Spinraza.

I wouldn’t know if doctors could administer the medication until they tried a lumbar puncture. I would go through all these hoops to get Spinraza, and I wouldn’t even know if I could physically undergo the procedure until I was on the table. Such was the case for one of our fellow columnists.

There are so many things to consider. Another columnist wrote about what happens when it’s been too long since the last Spinraza injection. It’s hard to think that my body would rely completely on Spinraza, that I would have to keep getting Spinraza to halt the progression of SMA.

Spinraza is a treatment, not a cure. For us, it’s essentially the elixir of life. And we have to fight tooth and claw even to try to obtain it. Isn’t that crazy? 

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Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.

Kala Godin is a 22 year old woman. She lives in Alberta, Canada. She was diagnosed with SMA type 2 at 11 months old. She is a Columnist, Author, and Editor. In her weekly column titled, “The Mermaid Chronic(les)” she discusses her life with SMA. This covers a wide range of topics, from her daily life to the expectation of others. No matter the topic, she tries to keep things silly and sarcastic.
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Kala Godin is a 22 year old woman. She lives in Alberta, Canada. She was diagnosed with SMA type 2 at 11 months old. She is a Columnist, Author, and Editor. In her weekly column titled, “The Mermaid Chronic(les)” she discusses her life with SMA. This covers a wide range of topics, from her daily life to the expectation of others. No matter the topic, she tries to keep things silly and sarcastic.

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