This is my son, Cash. Looking at him, it’s hard to tell that his muscles are breaking down in real-time, damaged ruthlessly every day by his rare genetic disorder, Duchenne muscular dystrophy (DMD). DMD is a universally progressive, fatal disease that robs muscle to the point of wheelchair dependence and early death.

In June, the FDA approved a new gene therapy, Elevidys, which helps muscles make dystrophin, the necessary protein Cash and others with DMD are missing. Incredible news—except FDA only approved the drug for ages 4 and 5, an impossibly small window since children with DMD are typically diagnosed between ages 4 and 5. For us, the clock started ticking with that June approval, since Cash would turn 6 on July 17. We thought the biggest hurdle was the careful medical screening Cash had to pass to receive the therapy. 

We were wrong.

The only thing now between Cash and a treatment that could transform the outcome of his health, the trajectory of his life: our health insurer, Highmark Delaware. Highmark has rejected our 3 attempts to authorize coverage, including an appeal by Cash’s doctor. Right up to its CEO, Highmark claims Elevidys is “experimental.” If that were the case, why would FDA approve the drug, and why are more and more states’ Blue Cross Blue Shield plans agreeing to cover it? 

Highmark Delaware still has the power to change Cash’s life. Although he turned 6 on July 17, it is still possible for them to cover Elevidys since our application began while he was 5. There are so many reasons for Highmark Delaware to do the right thing and reverse its unfounded decision: because Cash deserves a shot at a long, happy future. Because this treatment can make Duchenne care better, more effective, less costly for the health care system. Because what good is scientific progress if it isn’t given an opportunity to improve people’s lives?

Please sign on to urge Highmark Delaware to cover this life-changing treatment for Cash.

Cash's dad shares his plea here.