My infusion center is stationed at my local hospital in Grass Valley, California.
As a matter of protocol, the infusion center requires that my infusion orders be written by someone with hospital privileges, in the event that I have an adverse reaction to the drug and need to be hospitalized.
My Pompe Disease specialists are stationed at the University of California Davis Medical Center (UCDMC) in Sacramento. They’re the ones who are familiar with the specifics of my case, familiar with the new drug (Nexviazyme), and the ones who write my actual infusion orders. They, however, do not have hospital privileges at my local hospital.
This adds a layer of bureaucracy and delay in getting my Nexviazyme infusion orders in place. My specialists at UCDMC must forward my infusion orders to my primary care physician (PCP) in Grass Valley – who DOES have hospital privileges. My PCP, in turn, must forward those orders to the infusion center at the hospital.
This sounds like a lot of hoops … and it is. But I also have personal relationships with all these parties. This is one of those classic examples of how important it is to be one’s own advocate. Since we agreed that I would transition from Lumizyme to Nexviazyme, I’ve been in nearly daily contact with my Pompe specialists, my PCP, the drug manufacturer (Sanofi-Genzyme), and the infusion center to keep the ball in play.
Today, I have learned that my Pompe specialists have written my orders. My PCP has received them and has forwarded them to the infusion center. And the infusion center has received them. These three key steps have unfolded in the course of 24 hours! Nothing short of a miracle! All of the administrative pieces are in place!
Sanofi-Genzyme has scheduled an in-service with the infusion center pharmacy staff for October 13th to instruct the pharmacy how to mix the new drug.
My first Nexviazyme infusion is scheduled for Monday, 18 October.