The battle for affordable medication… AND HOPE!!

We did it family and friends!! With all of our hard work and prayers, I am so incredibly happy to tell you Blue Cross Blue Shield of Illinois has decided to cover Emma’s medication. I am not sure how it happened, there were so many people helping this cause! Friends and family across the United States! Sharing on Facebook or twitter. Writing to state representatives and the Illinois insurance commissioner.  

Was it the 10 hours I spent on the phone in one week trying to find answers and someone to hear me?? We will never know for sure what made this happen, but I believe it was all of these moving pieces! I simply cannot believe it! I have so much relief knowing she will be able to have this medication going forward.

This does not come without a little hurdle…they approved 3 pills, not 4. While yes this is for sure worth celebrating, and believe me, we are…her prescription is for 4 a day. I have already begun trying to figure out how to make this happen. It is the same story, they approved 3 pills a day based on current research, not information on Batten disease. I know we can make it happen!!

Emma is so worth fighting for!! In the meantime, Mark Cuban’s company Cost Plus Drugs has recently created a liquid formula of miglustat for a fraction of the cost…$2,000 for 4 months to supplement the pill she doesn’t have. While this is a lot, it is much better than what the alternative was!