Spinraza Update 001

A lot of good things happen yesterday and I should have written about them, but I used up my energy on my rant. Sorry about that.

My goal here is to get on Spinraza, do all I can to reverse what SMA has done, and document all of it. Earlier this week I called to schedule an appointment to get things rolling for yet another try! They scheduled me for April 5ᵗʰ! I was so frustrated! That’s four months of doing nothing. I agreed but also asked to be added to the list of openings from cancellations. I said yes, and yesterday I got a call for an opening for this Friday!

This is great news for me! Now I won’t feel like I’m wasting months waiting!

What to Expect?

This appointment is to get things rolling. The next appointment will be with PT and OT to redo the evaluation we did a few years ago. The next step will be getting Cigna to cover the procedure. Bio-gen, the pharmaceutical company making Spinraza are willing to give me the drug if the insurance company will cover the administration of the drug.

Total Frustration

Last time we got to this point I got a denial letter saying no because there was no evidence of me having SMA before the age of 15…

I’m refraining from going off on another rant. It’s a genetic disorder! It feels like the person writing the denial didn’t even bother to read the wiki page for SMA! This year, 2024, is the year I will get Spinraza! Tommorow I’ll be sharing more cool news I got this week!


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