“After using an injectable medication for seven years, my injection sites were too painful to continue. My insurance company denied requests to cover an oral medication—first they wanted me to do ‘step therapy’ and fail two more injectable DMTs!”
~Elizabeth, diagnosed in 2003
Initially, I rotated injections from my thighs to my upper arm. After a while I could no longer use my thighs as injection sites—it was just too painful. So my husband got trained to inject my rear; you have to avoid the sciatic nerve. By the time I met with my neurologist for my annual visit in 2012, I had been on weekly injections of Avonex for seven long years, and my injection sites were just too painful to continue.
My neurologist and I agreed that I would switch to an oral medication. However, my insurance company would not consider the oral medication until I first failed
Copaxone and Rebif (both injectable). In an attempt to get the “ruling” overturned, my neurologist sent an appeal letter to my insurance company—but they rejected it again. So I contacted the State Insurance Commission who overturned my insurer’s decision, and I was finally able to get oral medication (three months later!).
“Failing two more injectable DMTs was ridiculous in my eyes and the eyes of my neurologist.”
Life / MS
Doctor / Treatment
- Age 48, diagnosed in 2003, RRMS
- Symptoms: fatigue
- Metropolitan home in Washington, D.C.; lives with husband
- Elizabeth stopped working in 2002, currently volunteers with several organizations.
- Elizabeth navigates doctor visits, tests, treatment. Her husband handles insurance and expenses.
Insurance / Expense/ Assistance
- MS-specialized neurologist within 8 miles; knowledgeable about MS DMTs
- Elizabeth takes Gilenya (Novartis) oral 1x/day
- COBRA PPO premium $2100/month;
Following COBRA, Elizabeth will seek Marketplace coverage, costs TBD
- Currently Gilenya Go Program covers med
- Time-consuming multiple rejections to get insurance approval for oral medication when injectable was no longer tolerable