What do you do when you’re getting the prescription refill runaround?

Over the years, I’ve spent a lot of time on the phone with various organizations involved in my healthcare.

Probably the most frustrating thing is having to cycle from one person to another, who then directs me back to the first person I talked to. It seems like it’s only through sheer persistence and good fortune that I ever resolve anything.

But why do we act as if this is all so normal?

I was trying to get a prior authorization to refill my pancreatic enzyme replacement therapy, a medication I’ve been on my entire life due to cystic fibrosis.

Over the last six months, I missed doses of my enzymes because I had to ration them due to issues with getting the prescription refilled. This time around, when I noticed I was running low and knew I didn’t have any refills left, I asked my clinic to send over a new prescription so I could refill it. A couple of days later, I learned that the pharmacy was unable to fill it because it required prior authorization from my clinic. From my clinic, I learned that a test claim showed no prior authorization was needed.

I resolved to call my pharmacy benefits manager, but I ended up on the phone with a pharmacy benefits optimizer (I wasn’t sure what that was), who confirmed that I did need prior authorization, but not the usual prior authorization. Instead, I needed one that enables a cost threshold approval.

Ah, there it is.

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Takeways? I have a few.

This experience taught me some lessons, which we may all benefit from.

First, advocate for yourself and don’t worry about being viewed as a pain. Our health is important. We have every right to advocate for ourselves and to be persistent about it. Persistence is key to navigating these irritating structural challenges.

Getting to the bottom of this issue took several phone calls and at least five hours, and I still haven’t gotten my medication.

I’m fortunate to have had the time, flexibility, and resources to spend on this. My day job is a project manager, so I desperately wish I could have just gotten everybody all on the phone together.

Second, leverage your resources. Ask your clinic for help if you have a dedicated pharmacist or pharmacy liaison. The Cystic Fibrosis Foundation has a terrific resource called Compass that you can call for insurance-related questions. If you have employer-sponsored insurance, try your human resources department.

Lastly, own your emotions, but share them if you need to. While it’s important to manage our emotions as we work to resolve issues, expressing our frustration can also help us get answers. It’s frustrating to face these challenges, and we shouldn’t suppress our valid emotions.

It’s sometimes not our disease itself that causes us so much stress, as much as it is navigating the complicated system that is supposed to help us feel better. This is just one example of how structural issues can impede access to care and lead to people faring poorer than they should.

Still, remain hopeful and know there is a light at the end of the tunnel. But maybe also ask: Why does it have to be this way?

Note: Cystic Fibrosis 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 Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.