The Evrysdi Chronicles: Full Speed Ahead

According to my mother, my columns are the first result when you Google “Evrysdi (risdiplam) denial.” Which isn’t surprising. I’ve written several scathing columns about the application process, from verifying my diagnosis to correcting blatantly false insurance claims. The squeaky wheel gets the grease, or so the saying goes, so I’ve been squeaking up a storm, trying — and failing — to keep my hopes up.

So you can imagine my dread when I got a text on an ordinary Wednesday afternoon: “You have a message from your care team. Please log into MyChart to view the message.” “You have a message from your care team” has quickly become code for “We’ve run into another Evrysdi roadblock,” so I took my time navigating to MyChart.

For context: My neurologist had every intention of appealing the latest denial, which stated I was eight months past the target age range. He even went as far as scheduling a peer-to-peer review with my insurance company, which would allow him to make his case in person. However, someone from my insurance company didn’t attend. The only option was to reschedule, but my neurologist was busy for the next two weeks, pushing the review to early April, if not later.

It was the waiting game. Again. And after seven months of this, my patience was wearing thin.

I didn’t want to face the music. But I can’t let a message from my care team go unopened — I’m too anxious for that kind of lackadaisical approach to healthcare. So I put on my big-girl pants and opened the message.

And then I screamed.

“We finally got some good news! Our second request for peer to peer review prompted your insurance to send the appeal for an external review, and it was approved.”

Approved. Until March 24, 2022.

More screaming, this time in group chats and on Twitter. I texted my parents immediately: “I GOT APPROVED FOR THE SMA MEDICATION,” because my dad never remembers the name, and Evrysdi is too much of a tongue-twister to type over and over and over again.

Still screaming. I reread the message, just to make sure I wasn’t hallucinating. “We finally got some good news!”

Nope. It was undeniably real.

I spent the rest of the day in a giddy haze.

Don’t get me wrong. I’m under no illusions that I will see any improvements on Evrysdi. Even if I do, it could take years for the improvements to manifest. Evrysdi isn’t a miracle cure. But the approval felt like a win. After months of struggle, cooped up in the house with nothing but my cat for company, cursing my sick body for everything that comes with it, I finally had something to celebrate.

Later that night, as my dad prepped my night feed, I mentioned a dream I’d had early that morning. I’d gotten COVID-19 and was such a lost cause that my doctor didn’t see the point in talking to me directly. Instead, she spoke to my parents as if I were already dead. My caregiver wept; my dad kissed me goodbye. Meanwhile, I screamed until my voice went out, begging for someone to hear me.

I woke up in a funk. It was one of those dreams that lingers throughout the day, real in a way that leaves you shaken. When I got the news, though, I couldn’t help but laugh. I distinctly remembered thinking that my COVID-19-related death was a shame — not because I was, you know, dying, but because I’d been so close to starting Evrysdi.

My dreams are weird. They always have been. But that “coincidence” still has me speechless. Forget writing — I’m going to pivot to full-time fortune-telling.

Only time will tell if Evrysdi turns my diagnosis around. But I’m finally making progress, and for that I am grateful.

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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, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.