When I was diagnosed with spinal muscular atrophy (SMA) at 11 months old, there was no cure or treatment. Vitamins, physical therapy, and respiratory exercises were used in the hope of slowing disease progression and maintaining physical abilities rather than improve health.
Five years ago, I didn’t believe that they would ever be a treatment or cure for SMA.
I hadn’t kept up with the news about my disease. Well, not until recently.
Now there are two treatments — two miracle drugs.
I think this is wonderful. Eventually, we will live in a world where kids don’t have to grow up with SMA.
I’m not saying it’s a bad life, but if I didn’t have my family or the resources that I have, it could have been.
Spinal muscular atrophy is not a good thing; I’m not romanticizing it. If I had been given the option, obviously, I would have chosen to walk.
So now there’s an option. Sort of.
The crazy thing, though, is the price of these medications.
I get that they’re not cheap to make as there are wages and resources to consider. I know that nothing comes for free.
But, at the same time, can you put a price on something that can save lives?
I’m astounded by the incredibly steep cost of these medications — hundreds of thousands, even millions of dollars.
Currently, in Canada, patients in two provinces have wide access to Spinraza.
In Alberta, the province where I live, I do not have access to either of these drugs. To pay for them yourself, you’d need to be a billionaire.
Unfortunately, I’m not.
For those who have private health plans, getting their insurer to cover Spinraza can be challenging.
And Zolgensma is brand new. We are just learning about it.
Both Spinraza and Zolgensma are amazing; we are seeing awesome results with them.
However, the dilemma is that they are not accessible to everyone who needs them.
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.
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