It was the best of times, it was the worst of times….so goes the famous line that rings all too true in our lives right now.
For those who don’t know, a life-changing new medication for CF, called Kalydeco, was approved by the FDA in lat...e January. This medication was designed for and clinically tested on one CF mutation—not one of Savannah’s mutations. However, I read a blog about two months ago from a young lady who was experiencing great results from using Kalydeco “off label”…and guess what….she has the same mutations as Savannah! After reading the blog, I couldn’t wait to get an email off that very night to Savannah’s pulmonologist. After much begging on my part, he agreed to write the prescription and thought as I did—what will it hurt to try it?
I was so excited when we got our first bottle of Kalydeco filled with no questions asked from the insurance company. After just 28 days on the medication, Savannah’s lung function (FEV1) increased from 46% to 57%---11% in one month with no antibiotics! This is the highest number she has seen in 3 years! She also got a sweat test the same day as her PFT and her sweat chloride level (much higher in CFers) dropped 30 points. We were ecstatic to say the least!
Imagine our despair to find out that our insurance company is denying her the medication because it is not FDA approved for her specific mutation. Even after her doctor submitted an urgent appeal with detailed documentation, she is still being denied coverage.
Why not just buy it outright? This medication costs $25,000 per month! Yes, I got all of the zeros in the right places. That’s $300,000 a year! It truly breaks my heart to know that I cannot provide my child with this “miracle in a bottle” because of the cost.
We are fighting in every way possible, including writing another appeal and involving an attorney. I feel as if I am in a bad dream or a movie—a movie that I am praying will have a happy ending. It may mean starting our own foundation, but we will find a way to get Savannah what she needs.
I leave you with a drawing that Savannah made for us a while back. Not only is it beautiful, but I think it is especially touching when you read the quotation on it and consider what I have just shared. She’s keeping her chin up in the midst of this storm and “dancing in the rain!” I love you SO much, Savannah!
Originally posted on Facebook
by Teresa Fuller (Savannah's Mom)