Diary Of A Gilenya Pioneer: Insurance And Gilenya

by Sara on April 19, 2011

Insurance And Gilenya

Money Money Money!

Typical Insurance Business Model = Avoid Providing Service? I’ve glimpsed the battle between insurance and Gilenya.

Several weeks ago I got the call from Novartis that I had been rejected by my insurance for Gilenya. When I ask why, she reads to me “Cost exceeds limit per patient. No further review.” My insurance coverage has no limit on the cost of a prescribed medication – it is technically covered and my insurance company has just chosen not to.

Within seconds, I began an exacerbation. For the last few weeks I have been experiencing something that is commonly called “The MS Hug.” I can’t print the things I call it in my head. At it’s worst, it’s the kind of pain you don’t want to live through.

I have been to the ER where morphine and Valium to the vein had little effect. I have a purse full of narcotics to keep me out of the ER and to somehow keep me at work.

The next article I write will detail the ins and outs of the hug because there’s not a great deal of information out there. What does exist is spread out and difficult to put together. When I was diagnosed in December of ’08, I found one mention of it, but the mention didn’t describe what it was like. When I developed it, I was horrified to find out what the body can do to itself. In one ER visit, on blood pressure medication, Valium, Hydrocodone, and Ambien, my blood pressure was still 168/122. On another visit when medication actually worked, I left with 113/70. My husband has been an angel beyond words.

Pain is a very powerful thing. And I’m still not on any medication for Multiple Sclerosis. You may wonder why, since I signed all the paperwork for it in January when the process first began. If you’re on as much pain medication as I am these days, you may not be aware of the date, but we’re getting close to May. At this rate, the insurance company will probably win at not having to pay for my MS medication the entire year. Their shareholders will be ecstatic.

Per several phone calls with my provider :

  • they have rejected my request 7 times in the past weeks.
  • they have never received a request to reject
  • they have rejected both prior authorizations
  • they have rejected one prior authorization but have one pending
  • they have not received any prior authorizations
  • no action will be taken toward a prior authorization until “additional questions” are answered
  • they can only reveal their “additional questions” to the doctor and only if the doctor calls them (they will not notify the doctor)
  • their “additional questions” are why don’t I first try every other medication available first

Then, after enough calls to the insurance company, HR, our HR Benefits liaison, etc. I receive a phone call. When I return the call, I’m told that there is nothing on file for me. No prior authorizations, no rejections, no prescription. Somehow, there is now a blank file for me, marked “urgent.”

The lady on the other end of the phone line says, If you want a prescription, perhaps you should contact your doctor and ask him to write one for you and send it in.”

This is not right.

Apparently after this chain of events, my case was sent to an “escalation group.” This afternoon my blank, urgent file was changed to contain a prescription, a recovered prior authorization form, and an overnight delivery to my home which is scheduled for tomorrow.

Amazing. Their escalation group only contains about 5 people, so if you’re one of the lucky few trying and not giving up when it comes to this prescription company, work hard and it will eventually happen. Tomorrow, it’s time to celebrate!


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