Yet another insurance obstacle on my journey with Evrysdi

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

I was expecting my insurance to turn up their nose at renewing my Evrysdi (risdiplam) prescription to treat my SMA. I wasn’t expecting them to not inform me of the denial.

My mom retired on May 1. On one hand, this is the best thing that’s happened to the Albers family in a while — after 35 years, my mom can finally live the way she wants. But as happy as we are for her, we’re also in for some big changes, like a different insurance plan.

I’ve written about how my mom’s retirement will affect my healthcare. While my parents get to stay on their current plan, I have no choice but to switch to Medicaid as my primary insurance provider. Of course, a change of this magnitude always comes with anxieties. Will I be able to cover my medications? And what about my specialists? Can I afford to see them as much as I should?

But my biggest concern was Evrysdi. I had a hard enough time getting my private insurance to cover the medication. The chances of getting Medicaid to renew my prescription seemed slim to none. But getting my private insurance company to cooperate turned out to be the real challenge.

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Initially, it denied me on the basis of “not showing enough improvement while on the medication.” Frustrated but ultimately unfazed, I worked with my neurologist’s team to put together an appeal. I even went so far as to get a pulmonary function test in the hopes of showing my improvement. I assumed insurance would deny me again, but it was worth a shot.

That was over a month ago.

Long wait times are to be expected, especially when it comes to healthcare. But my insurance company has been exceedingly prompt when it comes to denying me disease-modifying therapies (DMTs). I found it odd that I hadn’t heard anything, so I decided to check in with my neurologist’s team and make sure they’d submitted the appeal. It turns out they had.

My insurance company didn’t deign to inform me of yet another denial.

Luckily, my life doesn’t depend on Evrysdi. I haven’t experienced any side effects as a result of the admittedly frustrating and wholly unnecessary interruption in treatment. But many disabled folks rely on DMTs to survive. I can’t imagine what would happen to their physical and mental health if they were to experience something similar.

I’m grateful for medications like Evrysdi, just like I’m grateful for the privilege and, frankly, luck that has resulted in my treatment. But the further I get in my journey, the more frustrated I become.

I hate that it’s so difficult to obtain DMTs in the first place.

I hate that obstacles like these are commonplace when it comes to life with rare disease.

I hate that our lives have a price tag. That people in power sacrifice our continued survival on the altar of profit.

Medicaid will become my primary insurance on June 1. I’ll likely have to submit several appeals in an effort to renew my prescription. Even if I succeed, there’s no telling how long the process will take. Six months? A year? How much will my SMA progress between now and then?

How much do I have to lose before we decide that enough is enough?

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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.