Celebrating My 1st Evrysdi-versary and Looking to the Future
My first Evrysdi-versary passed without incident. Ironic, considering how much time and effort I put into acquiring the medication. A disease-modifying treatment (DMT) for SMA is no small thing.
Spinraza (nusinersen) took the community by storm, with patients around the world petitioning their insurance companies. I wasn’t immune to the craze, and even went so far as to consult a neurologist. But it quickly became apparent that Spinraza’s mode of delivery wouldn’t jive with my spinal rods. So I looked to alternative treatments — namely Evrysdi (risdiplam).
It took me over a year to actually procure the medication. The process was long and needlessly complex. If you’re a longtime reader of my column, you’ll remember the neurologist who went so far as to question my diagnosis. Then there was the way my insurance company undermined my case by misreading my doctor’s notes. It felt as though they were manipulating the manufacturer guidelines to serve their own ends. I’m used to the startling lack of ethics displayed by the American healthcare system. But it nonetheless sickened me.
I have no delusions when it comes to my worth in society. But my fight for Evrysdi — a first-of-its-kind, potentially lifesaving medication — only confirmed my greatest fears. I was only of use while suffering. My desire to improve my quality of life was permissible so long as I begged the powers that be, vocally and often.
In the end, I was lucky. My appeal was approved — but only after a months-long, uphill battle. In March 2021, I took my first dose of Evrysdi.
I knew better than to expect miracles. You can imagine, then, my surprise when I realized that I was actually seeing improvements. I wasn’t doing cartwheels or anything like that, but as spring turned to summer, and summer to fall, it occurred to me that I was stronger. Not much, but enough to make a difference.
Initially, I was reluctant to attribute the change to Evrysdi. But my parents were eager to confirm my suspicions. I did seem stronger, not to mention the fact that I’d regained some range of motion in my hands. I still struggled with fatigue, but overall, the exhaustion was less debilitating.
For all my low — practically nonexistent — expectations, it seemed that Evrysdi was living up to its ridiculously high price tag.
I am, of course, lucky. Many people haven’t seen improvements at all. Some had to go off the medication due to side effects. My best friend and fellow columnist, Sherry Toh, has yet to be approved, despite meeting all of the manufacturer guidelines.
Every night, I take my 6.6 mL of Evrysdi. You would think that, after months of this, the awe would’ve worn off by now. But it hasn’t. Every once in a while, it hits me that I am partaking in what was once impossible. My teenage self would never have dreamed that a DMT for SMA would be available. But it is. It is, and I am one of the privileged few who benefit from it.
I am grateful — not just that my insurance company deemed me worthy, but that I am seeing improvements. But my joy is dulled by my concern for others in my community. A $350,000 price tag, while understandable (remember that we’re talking about a first-of-its-kind, potentially lifesaving medication here), is inaccessible to so many.
I’m not dismissing the worth of these DMTs. Nor am I undervaluing the decades of work that went into Evrysdi and medications like it. But as a community, we need to do more than celebrate these milestones. We need to ensure that everyone in need of DMTs can benefit from them. We need to disinvest from the belief that disabled lives are worth a certain amount of money. That we need to prove to society — insurance companies, manufacturers, governments — that we deserve to live and to live well.
I am one of a privileged few. But I will not stop until everyone in my community has what they need to thrive.
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.