After Skyclarys, a new odyssey begins with Friedreich’s ataxia

The first treatment brings frustration but also hope for much more ahead

Matthew Lafleur avatar

by Matthew Lafleur |

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The recent approval of Skyclarys (omaveloxolone), the first treatment for Friedreich’s ataxia (FA), is game-changing. But I’m frustrated that there’s still a long journey ahead for me.

When this drug was approved Feb. 28, I celebrated in a column posted minutes after the announcement. A few weeks later, I wrote another column on its approval from a more sober and realistic perspective — less celebratory, but not intended to be any less hopeful.

But my celebration was cut short. I soon realized how complicated and frustrating gaining access to Skyclarys would be. I had to realize that no one’s FA journey has ended yet.

But still, this treatment is a reality — even if not all of us can access it because of our age, country, or insurance coverage. May Skyclarys’ approval open the floodgates for more treatments and, eventually, a cure for FA.

Now a new odyssey begins.

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I’ve been on Skyclarys for nearly 5 years. Here are my thoughts.

Sneaking past the cyclops

I assumed that getting coverage for Skyclarys from the American healthcare system would be easy.

I was wrong.

I got in touch with Reata, the company that markets Skyclarys, and its REACH program a few days after the drug was approved. REACH helps eligible FA patients get access to this expensive medication. But before it can step in, applicants must go to their primary insurance company.

Like Homer’s Odysseus, who had to sneak past the belligerent cyclops Polyphemus, we with FA, if we’re older than 16 in the U.S., have to get past American health insurance companies — ideally with an approval, but with some sort of definitive response either way.

So I waited, impatient and frustrated, and hoped that insurance companies weren’t as dim, blind, or cruel as a cyclops.

About three weeks before writing this column, I received a letter from my insurance company, stating that my prescription for Skyclarys was approved! I felt an incredible mix of excitement and relief.

I was surprised at how easy it was to get a prescription.

Almost too easy.

Turns out, it was too easy.

When I called REACH the next day, a staff member told me that my approval for Skyclarys was still pending and my insurance provider’s letter was a mistake.

As I feared, this cyclops isn’t very bright.

A new odyssey

Of course, I’m disappointed that I’m still waiting on my insurance to approve or deny my request, but many others in the U.S. are in the same boat. And it’s worse for the large number of FA patients under age 16 and those outside of the U.S.

As we all wait for this FA treatment, we can easily get discouraged. But I try to remember that whether or not I get access to the first treatment, there will be many more. Skyclarys is the first, so it seems special now, but it won’t be the last.

As many of us still wait to get past the cyclops, we must remember that however it turns out, our ultimate goal — curing our FA — hasn’t yet been reached.

So a new odyssey begins. We may face sirens singing to us about how inspirational we are, lotus-eaters who encourage us to never move forward, and a demi-goddess who wants us to give up on our journey.

Meanwhile, we have an exciting, terrifying, and essential adventure ahead. FA patients are called to bravely weave a pass between the recruiting clinical trials for the promising therapies CTI-1601 and DT-216 — our version of Scylla and Charybdis from “The Odyssey.” For more information about these trials, please email Clinilabs at [email protected].

A new adventure is beginning. New treatments for FA! New technology! And eventually, a cure!

I know you’re tired. I am, too.

But let’s get going.

Note: Friedreich’s Ataxia News 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 another 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 Friedreich’s Ataxia News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.


Elizabeth Hamilton avatar

Elizabeth Hamilton

Incredible article that speaks truth! And how ironic that this came out the day we know Skyclary can move forward with distribution! This is a journey, not a destination and we keep going, we keep moving because together we can do hard things. Hope is not so fragile a thing but strong when nurtured with relationships, faith, and reminders of how far we have come. Thank you, Matthew, for sharing this! Here's to the Odyssey.

Lori DePorter avatar

Lori DePorter

It's almost like a never-ending bus ride. Everyone gets on at a different stop, and while some stay on the bus, others jump off at a different stop for a while. Ultimately, the final destination is a cure. Until then, I hope your next stop is a successful insurance claim and the drug. Either way, stick it out til the end - the CURE!


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