I Can’t Get Evrysdi Yet, Thanks to a Broken Healthcare System

I may have thrown a fit about genetic testing, but at the end of the day, it was easier than most things.

The genetic counselor sent me the test in the mail. (I’m tired of COVID-19, but I will say I’m enjoying the ability to do pretty much everything from the comfort of my home.) I did a spit take, captured it in a vial, and sent it back free of charge. It didn’t take long for the genetic geniuses to determine that I had three copies of the SMN2 gene.

(In my defense, I wouldn’t have thrown a fit if they’d just said outright that my original test from the 1990s didn’t look for SMN2 copies. But what’s done is done. I’m saving the test results, so the next time some well-meaning medical professional suggests I might not actually have SMA, I can clap back in record time.)

Armed with updated test results, I scheduled an appointment with a pediatric neurologist. The universe was clearly trying to make up for my last appointment, because I was able to secure a virtual slot at the glorious time of 12:10 p.m. I didn’t have to get up before the sun, or drive 45 minutes to downtown Minneapolis-St. Paul, or shiver in the weak autumnal sunlight as my dad searched for a parking spot.

The neurologist knew what SMA was — a miracle. He knew I was interested in Evrysdi (risdiplam), and knew exactly what needed to be done to jumpstart the insurance application — another miracle. I hopped from one video call to another, meeting with care coordinators and physical therapists. The process was easy and painless — a miracle to beat all other miracles.

I knew that insurance would put up a fight. Evrysdi is expensive and brand spanking new. But I figured I had an advantage — Spinraza (nusinersen), Evrysdi’s older and slightly-less-refined cousin, was a no-go for me and my spinal rods. It’s Evrysdi or bust. Surely they would prefer to pay for a preventive treatment instead of multiple hospital visits.

I had high hopes. 2020 was a terrible year, but things were turning around, and a little optimism never hurt anyone.

Then I got a denial letter from my insurance.

My mom flounced into my room with the air of someone who was more than ready to don her boxing gloves. The reason for denial was, in her words, blatantly false: “Current plan approved criteria does not allow coverage of Evrysdi for spinal muscular atrophy if the patient is dependent on invasive breathing support or noninvasive breathing support other than for naps or nighttime sleep.”

Other than my BiPAP, which I use for “nighttime sleep,” I am not dependent on breathing support.

My mom is particularly talented at inspiring the masses, so I took to MyChart with righteous fury. I wasn’t sure how the information got mixed up, but I hoped the clarification would speed things along.

My neurologist’s response was simple. Apparently, it is common for insurance companies to read notes incorrectly.

In other words, denials are common and mean nothing.

This is my last column of 2020. Normally, I would try to wrap things up with a pretty little bow. I have my moments, but I am and will always be a glass-half-full type of person. But 2020 has been a year, and I’m tired.

Tired of a system that punishes the sick and disabled.

Tired of a system that oppresses and gaslights and couches harm in terms like “insurance coverage” and “medical necessity.”

Tired of a system that wastes my time, and my caregivers’ time, and my doctors’ time, and so on and so forth, from now until the end of time.

Tired. And that’s OK.

So, I’ll leave you with this: 2021 is a chance to make things better. And I sincerely hope that we do.

“We won’t die secret deaths anymore. The world only spins forward. We will be citizens. The time has come. Bye now. You are fabulous creatures, each and every one. And I bless you: More Life. The Great Work Begins.” ― Tony Kushner, “Angels in America“

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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.