The continuing setbacks with my health insurance are beginning to overwhelm me, far more than I anticipated. I got notified that what my insurance covered changed during my bout with COVID-19. I’m currently still trying to figure out the reason why. 

Prior to this change, I had state insurance and coverage for medication; it was great. My medication, Evrysdi® (risdiplam) for spinal muscular atrophy (SMA), was fully covered. 

However, when I didn’t receive the medication on the scheduled day for delivery, I knew something was wrong. I called the pharmacy asking why I hadn’t received it, and they informed me that my insurance changed and they denied my prescription. Immediately, I called my HCP and explained what was happening. He couldn’t understand why this happened. I’ve been on Evrysdi for over a year, and to deny me now, doesn’t make sense.


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My doctor sent an urgent letter to appeal this ruling, stating that I shouldn’t be without this treatment for less than a couple of days, if at all. However, that appeal was quickly denied. 

Currently, I’ve been without the medication for 15 days. This is wrong on every level. How are these insurance companies justified for withholding a medication someone has been on for over a year? They requested that I prove with some kind of documentation that I have SMA. I’ve proven this several times in the past. At this point, they’re making me feel like a fool. 

Do they honestly think I’d be taking a medication for a neurological disease for fun? And, do they think a doctor would jeopardize his license to prescribe it for something I didn’t have or need? That would be ludicrous.

I can’t help but feel angry and frustrated for the injustice, because I know I’m not alone in this situation. And I’d like to believe I’m speaking for those who aren’t fortunate enough to have this platform to voice their same concerns to their medical professionals. 

Read more about therap[ies for spinal muscular atrophy

The SMA community finally had reason to celebrate when this medication hit the market last year, giving us hope that death from this disease doesn’t have to be as close as it once was. This medication has provided those of us suffering from SMA with a chance to live life in less fear and more comfort. When insurance companies have the power to take it away abruptly, they’re damaging someone’s mental, physical, and emotional well-being.

How is it right they demand proof time after time to cover this prescription, when they can’t clarify a reasonable explanation for denial? Maybe they should be proving to me why they don’t think I need it. I depend on this medication to stop the progression of my disease. Without it, those of us suffering from SMA are at risk every day of getting weaker. Insurance companies rob any control we have over our current/future health. They have the final say whether our health thrives or declines. This concerns me, greatly. 

My questions are, would they do this to someone who was terminally ill? Would they withhold a cancer patient his or her meds? Isn’t there any liability if they were to die without them, they’d be responsible? I’m not exactly sure, but questions like these cause me to want to dig a little deeper and advocate more. Thankfully, I’m not terminally Ill. However, SMA is progressive. All the progress I’ve made during the year with Evrysdi, I’m losing now and that’s devastating.

I’m experiencing mild side effects of muscle twitching, and overall I feel slightly weaker. Meanwhile, what insurance companies don’t understand is the nature of this medication. It takes time to build in the body’s system to work effectively. Since it’s been over 15 days the half-life of it is depleted. If, and when I receive  Evrysdi again, it will be starting back at square one. Situations like these only cause additional, unneeded stress on those suffering from rare diseases.