Almost two weeks ago I posted that I was in the process of switching to Gilenya. Not so fast, I suppose. My neurologist’s office staff was eager for me to let Gilenya set up all of my doctor appointments for me to undergo the necessary tests. By their accounts they faxed in my information the morning I was in their office, and then a few days later when they hadn’t heard anything back. And then again when I called them after a very unproductive phone call with Gilenya. With such a new drug, I should have expected Gilenya process problems.
Several months ago I switched positions within the company to work in a 24/7 network surveillance group. We rotate weekends, leaving me with a “weekend” during the week for a month here and there. I had hoped that I could use these days to get through all of my doctor appointments this month. But the opportunity to accomplish that is rapidly vanishing.
When I gave up on hearing from Gilenya, I called them. I was not in their system and was told either the doctor had not sent anything or that it can take a couple of weeks for someone to process the fax from my doctor. The representatives also advised me that I should just setup all appointments with doctors and for tests myself as it would take a long time if I relied on them to do it. They then told me that they also would not order the tests, that my neurologist had to do that anyway.
At this point, I wanted to cut Gilenya-The-Company out of the process of getting to Gilenya-The-Drug. I called my neurologist and asked them to help order the tests from my primary care physician so that I could get started without waiting for Gilenya. This is when I discovered that they rely on Gilenya to negotiate approval with my insurance company.
So, with no tests ordered and no response from Gilenya I am simply waiting to see what happens.
There’s no denying the dual frustration of having to wait for faceless others somewhere to get around to my file while I effectively become unprotected by any DMD having already stopped interferon treatment. Hopefully my next post will be good news rather than more of nothing.
Have you had trouble obtaining Multiple Sclerosis treatment?