In a little over a week, on August 18th, I will be driving to Philadelphia for my first Spinraza injection! This post is a brief recap of some of the details and considerations surrounding this life-changing event.
-Spinraza is the first-ever FDA-approved treatment for my disease, spinal muscular atrophy.
-SMA causes my muscles to waste away as I get older, leading to the loss of abilities like walking (duh, I never walked), eating, breathing, swallowing, etc., etc., etc. Basically, if a bodily function involves a muscle, SMA affects it.
-Spinraza, which is administered through a spinal injection, is basically fake DNA that tells my body to stop being stupid and start creating the correct proteins for muscle growth and maintenance. It essential stops the progression of my muscle loss, which is more profound than I can currently fathom, and in many recipients, there has even been some reversal of the loss, meaning people are gaining back strength and ability.
-My private insurance approved the drug, which is super expensive (like add a hundred thousand dollars to whatever you’re probably imagining), and Biogen is helping to cover the copay, which they’re doing for many individuals. I will have to get these injections four times in the first 58 days, then once every four months for the rest of my life, which makes the unstable and fluctuating nature of healthcare scary for me. Fingers crossed I can stay covered and approved ad infinitum.
-The actual injection procedure might be a bit hairy. I have a spinal fusion that was done when I was seven to keep my spine straight, so there’s lots of metal and other garbage that might get in the way of the delivery. From what I’ve heard and read, it’s either going to be a long, torturously painful process of digging around for a microscopic entry point, or they’ll nail it on the first try and I won’t feel a thing. I’m hoping for the latter.
-If, next Friday, we find that the spinal injection is just not possible, there are other options of varying seriousness. I’ve seen some are getting it injected into their necks, which sounds lovely. I can also have holes drilled in my spine to make room for the needle, but that method requires a surgery, and that opens a whole new can of complication.
-The only potential side effect that worries me are these nasty migraines that some people are experiencing as a result of the spinal-tap-ish delivery method.
-Even with all these scary uncertainties, I’m ecstatic about the possibility of getting stronger, or at least not getting any worse. It still feels surreal, and I’ll do my best to bring all of you with me through the good and the bad.
In the meantime, Sarah and I are working hard on booking speeches for the fall, as well as a top-secret project that we’ll be announcing next Friday while my spinal cord is being stabbed. Keep an eye out for it!
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