My Son Has Muscular Dystrophy. His Insurance Company Is Taking Away a Breakthrough Drug.

When my son, Caden, was five years old, he was diagnosed with Duchenne muscular dystrophy. It was the scariest and worst day of my life. The day Caden was diagnosed, there was no hope.

A few months later, I got a call asking if Caden would be one of 12 boys for a first-of-its-kind treatment for the disease. We went from despair to hopeful overnight.For the last five years, the progression of Caden’s disease has slowed due to this breakthrough treatment – Exondys 51 – which the FDA approved in late 2016. The drug helps his body make dystrophin, which is necessary for his muscles to function.

Despite Caden playing a key role in the development of this drug, our insurance company, Anthem BlueCross BlueShield, is now refusing to acknowledge its approval. Instead, the company is weaseling out of coverage by calling it “investigational” and “experimental.” I have helped my son fight this horrific disease for five years and I won’t let a greedy and malicious insurance company take away a drug that has changed his life. The reason insurance exists in the first place, is to cover health care for patients. Anthem should not be allowed to take this drug away from my son.

Please sign my petition and send a message to Anthem that Caden doesn’t deserve to be harmed by his insurance company. He’s a young boy who has already been through a lot. Caden's daily struggles aren't just physical, they are emotional too. Teenage hormones along with having to deal with the emotional repercussions of living with this disease have taken a toll.

When our initial claim was sent in for approval, Anthem didn't even have a clinical expert or even a neurologist on the deciding panel (I believe it was a Rheumotoligist, who won’t know anything about muscular dystrophy or this treatment). Caden's doctor demanded a neurologist be in the panel and in the denial letter they stated a neurologist was on that panel but they refused to provide evidence to this end. Highlighting their ignorance, they didn’t even refer to the disease correctly (calling it "Duchenne Dystrophy” instead of “Duchenne Muscular Dystrophy”). Since then, they Anthem has ignored us.  They have refused to return my calls or e-mails. They’re pretending we don’t exist.My son’s life is at stake and Anthem will be liable. I’m asking Anthem’s CEO, Joseph Swedish, to look in the mirror and ask if the company is willing accept this.

Please consider signing my petition and share with everyone you know. I’ve promised Caden that we will beat this.

My heartfelt thanks for your time and support.

Beth Perez