My name is Hailey Adkisson, and I live in Salem, Oregon. 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. Juniper needed 3 vials over the course of her only one month treatment. That meant a total of $120,000. I was shocked. Not only had our world just been rocked with a life-altering diagnosis for our infant daughter, but we now had to worry if our insurance would cover the expensive medication needed to battle this horrific disease.
Juniper was started on Acthar gel while in the hospital as immediate treatment is imperative with infantile spasms in order to hopefully protect development. We had to stay at the hospital four extra days until our insurance approved it for coverage since it would have been unsafe to discharge her prior to guaranteeing the medication was safely delivered to our home.
While I would like to say that treatment cured my daughter, it unfortunately did not. We would go on to try Acthar one more time this past August, almost a year to the day after her first hospital admission. Since Juniper weighed more a year later, this time we required four vials of Acthar gel. That means $280,000 worth of medication for only two months of treatment.
There is no possible way we could afford $280,000 worth of medication for our daughter and everyday 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. That being said, throughout this epilepsy journey, I’ve met many families who have had to make incredibly difficult decisions in order to afford Acthar gel and other expensive epilepsy medications. How do you say “no” to a potentially life-saving drug for your child?
I want to use my voice to fight for those who do not have the same privileges as my family. The truth is when it comes to your kids, you will do anything to protect them. Unfortunately, the pharmaceutical industry preys on that. Families are forced to drain their savings, uproot their lives, and refinance their homes, just to keep their children alive.
It doesn’t have to be like this. We need lower drug prices now.