How an interruption in SMA treatment affected my quality of life

Note: This column describes the author’s own experiences with Evrysdi (risdiplam). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.

On our way home from the annual Cure SMA conference, I told my mom, “Wouldn’t it be funny if we came home to an approval from Medicaid?”

I was, of course, joking. After months of fighting for my Evrysdi (risdiplam) prescription, I knew better than to hope for a simple resolution. My insurance denied me coverage back in April, so I was well accustomed to the back-and-forth of insurance appeals. I figured I had at least one more denial ahead of me, if not two.

You can imagine my surprise, then, when my mom announced that I had, in fact, received a letter from Medicaid. Two letters, to be exact — one approval and one denial. Neither was dated, so we had no way of knowing which was the latest.

I immediately messaged my neurology team, hoping they could clear things up. They responded the next day, confirming that Medicaid had approved my prescription. I scheduled my first shipment, relieved to put the denials — and the physical deterioration — behind me.

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The consequences of going off Evrysdi

Overall, I’ve had a positive experience with Evrysdi: minimal side effects and a noticeable improvement in my quality of life. I knew I would suffer somewhat as a result of stopping SMA treatment. But I never could’ve prepared for just how intense my decline was.

I didn’t realize how much I’d deteriorated until late June, when we drove from Minnesota to Florida to attend the conference. But it became apparent that, while I was physically healthy, I had lost much of the stamina I’d gained since starting Evrysdi in 2021. I struggled to keep up with my parents as we toured the Biltmore Estate and the Blue Ridge Mountains. My dad often had to drive for me, putting my wheelchair’s attendant control to good use.

My parents were all too willing to take a break in the shade as I caught my breath. But I was frustrated. More than that, I was angry. SMA has taken so much from me over the years. So to regain a sliver of my energy, only to have it stolen from me — again — because I “hadn’t improved enough,” according to some insurance company’s standards …

I regained some stamina over the course of the trip. By the time we left Disney World, I felt stronger than before. But the fact remained that I was struggling without Evrysdi.

Good news tempered by systemic barriers

I started to improve days after my first dose, and while I still have a ways to go, I’m confident that I will recover from my interruption in SMA treatment. I am so stupidly grateful to be back on Evrysdi.

I am also so stupidly mad.

There is so much I want for the SMA community, like marriage equality and authentic representation in popular media. But there’s nothing I want more for my people than accessible healthcare.

I want everyone I know to be able to take any necessary medications.

I want my best friend and fellow columnist, Sherry Toh, to secure a full year of Evrysdi without having to resort to fundraising.

I want these miraculous achievements of modern medicine to be available to everyone, regardless of where they live, how much they make, or — God forbid — how severe their disease is.

August is SMA Awareness Month. I’m tired of fighting for my life. Aren’t you?

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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.