Last month, I decided to change my direction for treating my MS, and chose to start taking Gilenya (the first oral medication FDA approved for the treatment of MS). It's a pill. It's just a pill. But you can't leave the doctor's office with a prescription slip and head to you pharmacy to have it filled. You must travel the long and winding road...
First, I filled out a Service Request Form while still at the doctor's office that they sent to Novartis to get me registered.
THEN I got blood drawn to check my liver, white blood count, and other mystery things.
THEN I had to get an EKG from my primary care doctor to make sure my heart was okay (Gilenya can cause a drop in heart rate or spike in blood pressure).
THEN I had to get an eye exam from my opthamologist (Gilenya can cause macular edema, swelling behind the eye that can affect vision).
THEN I had to wait five days after the eye exam before I could call to get scheduled to take my first pill. Yes, I had to get scheduled to take the first pill. The first dose has to be given in a medical facility that will monitor my heart rate for six hours after I swallow the first magic pill.
AND, then I had to decide WHERE to have my First Dose Observation (FDO). If I get the FDO at a Concentra medical facility nearby, then I have to pay $500 out of pocket because Medicare does not cover it (I think it's because Novartis contracted with Concentra to help them monitor their own drug). But if I travel over 80 miles south, I can have the FDO for free at a facility south of Baltimore that is not a Concentra site. That's a long drive during heavy rush hour traffic both ways for me (yes, I could get a ride). I do encourage Novartis to get this resolved. There have to be more choices.
I am now scheduled for my FDO on 18 Oct. I just hope Gilenya is worth the journey.