An unexpected Evrysdi denial brings me back to the fight

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 never thought it would be this difficult to secure a life-altering treatment.

This is about my best friend and fellow SMA News Today columnist, Sherry Toh, who is currently crowdfunding for her first year of Evrysdi (risdiplam) treatment. But it’s also, maybe a little surprisingly, about me.

I’ve written multiple columns about my struggles to get Evrysdi, from diagnosis hiccups to blatantly false insurance claims. Unfortunately for my health insurance company, I inherited not only my mother’s stubbornness but also her desire to stick it to the man in every way possible. So I continued fighting, and eventually received my first dose in May 2021.

I’ve seen significant improvement while on Evrysdi. I haven’t ditched the wheelchair or anything like that, but I have regained some stamina, as well as some range of motion that I thought I’d lost for good. The goal of disease-modifying therapies is to stabilize the condition, so I was ecstatic, as was my neurologist. I was told by many people on my care team that renewing my prescription should be relatively easy.

Of course, when is it ever?

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Let the games begin

I received my first denial sometime in March. According to my insurance company, we had failed to send the necessary assessment documents. My neurologist addressed the issue as quickly as possible, but it didn’t take long for my health insurance to send yet another denial.

Apparently, I hadn’t improved enough to warrant a renewal.

My mom immediately got to work, consulting all the guidelines and fine print that come with prescription medications. She was shocked to discover that my health insurance required gains that are nearly impossible for me to achieve as someone with SMA type 2.

Stability wasn’t enough. I had to be able to hold my head up on my own — something I haven’t been able to do for decades — to be worthy of the medication.

In an ideal world, my daily dose of Evrysdi would cure my SMA and make me a productive member of society. But life is imperfect, and honestly, I never thought I’d see accessible — if unequally distributed — medications like we have today.

I am more than happy with the gains I’ve experienced over the past couple of years. More importantly, I’m grateful that my disease likely will not worsen so long as I’m on Evrysdi. My current health, while frustrating, is more than manageable.

Disabled lives are consistently devalued. We see it everywhere, from politics and global affairs to mainstream media. I have lived with an enduring awareness of my own unimportance for 27 years, and for the most part, I have accepted it. But there will always be things I struggle to accept. Things that send me into a tailspin. Things that make me unbelievably angry — and unrepentantly determined.

The powers that be would have us grovel for lifesaving medications. They invent hoop after hoop after hoop, watching with disinterest as we scramble to prove our worth. When we dare to ask for more, they cite unachievable expectations in the hopes that we’ll give up.

I’m not giving up.

I am fighting for what I — and every SMA patient — deserves.

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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.