It has been a tumultuous morning here.

Today is the deadline for my hospital pharmacy to order the medication for my next scheduled enzyme replacement therapy infusion on Monday – 15 November. As of this morning, the pharmacy still had not received the written authorization from my insurance company with the codes necessary to switch over my medication from Lumizyme to Nexviazyme.

At 8:00am, I received a voicemail message from my insurance company informing me that the new drug was now authorized and that a letter was on its way to me via US Mail.

I’ve spent the last three hours on the phone trying to get an electronic copy of that letter to send over to the pharmacy by their Noon ordering deadline. Alas, after being transferred to three different departments, my insurance company was not able to get a digital copy to transmit to the pharmacy by Noon.

Thoroughly disappointed, I phoned my representative with Sanofi-Genzyme – who has worked tirelessly, day and night, for the past ten days to broker the necessary connections – to break the bad news. While I was on the phone with my rep, she received the order from my hospital – for NEXVIAZYME!

Apparently, in the fray of trying to get the digital copy of the authorization letter transmitted to the hospital, my insurance agent phoned the pharmacy directly and provided a verbal authorization and the necessary codes. And the hospital pharmacy was willing to accept a verbal okay.

So, after a month of delays, I am now officially scheduled for my first Nexviazyme infusion this coming Monday, 15 November … and my drug has been ordered.

I’m literally holding back tears of relief as I make this entry.