First Nexviazyme Delayed Again

/ Brian Terhorst

It brings me no joy to report that, yesterday, I was notified again that my first Nexvizyme infusion has been postponed. My first infusion on the new medication was originally scheduled for 18 October. Due to delays in securing necessary insurance authorizations, it was pushed to this coming Monday, 1 November.

I’d like to offer a reasonable explanation for why this change is being delayed by another two weeks but I’m afraid that nothing reasonable has been offered. My hospital is saying that they require a specific CPT code that will allow them to enter the new medication in their system and to bill the meds and infusion procedure to my insurance company. My reps at Sanofi-Genzyme assure me that they have provided those codes to my hospital weeks ago. Sanofi-Genzyme has confirmed that Nexviazyme is approved for use by my insurance company and is confirmed as billable against my policy.

I spent the day yesterday trying to connect the dots and getting the right people talking with each other. Alas, yesterday was the deadline – AGAIN – for my hospital to order my medication for Monday. And because the dots were not yet connected, they’ve ordered yet another dose of Lumizyme.

If you detect a note of frustration in this entry, it’s not your imagination.

More, as it comes.

~ Brian

7 thoughts on “First Nexviazyme Delayed Again”

    • Yeah. The frustration is there, Jenny. Looking back over this long path, though, I’ve had a lot of frustrations. I’m working on staying centered. I know that I’m close to bridging this gap and I need to remember that. I know fellow Pompe patients whose doctors have flatly refused to help them move over to Nexviazyme. My team is all working on my behalf; there are just some hitches in the process. When I focus on the bigger picture, I can rise above these delays. This is a good opportunity to practice patience … but it’s not always easy to do that.

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