In August 2020, at just six months old, my daughter, Juniper, was diagnosed with infantile spasms — a rare and catastrophic form of childhood epilepsy. Since then, she has undergone two brain surgeries, most recently, a hemispherectomy which removed the entire right hemisphere of her brain. My family and I work relentlessly to manage Juniper’s seizures and give her the best life possible, knowing there is unlikely to ever be a cure.
There was so much about this diagnosis that we were unprepared for, and one of those is how expensive it is to keep my daughter alive. When Juniper was first diagnosed and we were still at the hospital, our doctor prescribed her Acthar gel, which is the “gold standard” for treatment of infantile spasms. We were warned that it is a “very expensive medication” — and we quickly learned that meant a list price of nearly $40,000 per vial.
Every day I recognize how privileged we are to have the insurance coverage we do. However, I also know that could change at any moment — I don’t know what we would do if we lost our jobs or access to our excellent insurance.