Navigating the Medical System

I received some good and bad news yesterday. The good news, Cimzia was approved by my insurance company! That’s really good news because it was only approved by the FDA in May 2009. I figured they would question it. The bad news is two fold but of much less impact. First, the copay is $40 as opposed to $25 for Enbrel. Cimzia has a $500 copay help for the first year so that will help. Second, the prescription got held up because my doc only put in for a maintenance dose…two shots a month. The pharmacist called back and said that Cimzia recommends two shots every two weeks for the first 6 weeks then down to the maintenance dose of two shots every month. That will mean that I won’t get my first dose until next week.

So, I wait patiently while all the paperwork gets worked out. In the meantime, the pain and fatigue continues. Throughout the last year I’ve learned to navigate the medical system and the experience is not always so pleasant. My insurance company requires that I use a specialty pharmacy that is out of state and not my local pharmacy (owned by the same national chain). That’s been ok but their databases are not synced resulting in multiple conversations with both the local and speciality pharmacists. I can say that the specialty pharmacy folks are wonderful and I believe that is because they are used to dealing with complicated medications, diseases, and patients.

Through all of this I’ve learned that I have to be my own best advocate. This means taking time out of my busy day not only for doc appointments but to make phone calls between the various providers and organizations. Sometimes I feel like a pest…call the pharmacy to check, call the doctor’s office to check, leave a message with the busy nurse, call back, request a fax, call the next week to check on the status of the prescription, check with the insurance company, repeat information multiple times, check the status of a shipment through the parcel company, fill out a form for copay assistance, and the list goes on. As much as the people show care and compassion, they don’t have the time and/or personal interest to always go to bat for me. So, in addition to fighting RA, I find that I have to expend energy navigating the multiple layers of the medical system. I don’t have solutions but am keenly interested in the debate around national healthcare for the first time in my life.

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