My name is Stephanie and I am a resident of Kansas. My journey with high drug prices started when my son Ryan was diagnosed with type 1 diabetes in August of 2018.  

He went from being a healthy kid to insulin dependent basically overnight. As the owner of a small business, my family did not have health insurance available to us, and marketplace insurance was too pricey. At the time of my son’s diagnosis, we were uninsured and received close to a $33,000 bill from the hospital for his three-day stay. But that’s just where the costs begin.  

We quickly discovered the horrifyingly high prices of insulin without insurance coverage. Keep in mind, my child needs this drug to live. Without it he will die in a matter of days. And we were facing charges of thousands of dollars a month for his insulin. 

Our specialist kept us going with samples of insulin for a while. We applied for all the patient assistance programs. We were told we made too much income or didn’t qualify for one reason or another.  

There are a lot of stipulations on these programs. For example, the uninsured are often not eligible for help. That makes zero sense –– that’s who needs help the most.   

One and a half years into my son’s diagnosis, we had to sell our home and move due to not being able to find insurance coverage or afford his meds without it. We sold our home and purchased a smaller one in a different city where there were more options available to us. I thought having him back on a health insurance plan would ease our financial burden. I was wrong.

My son takes two types of insulin, and our insurance provides great coverage for one of them. The second one, Tresiba, has little coverage. For example, I recently picked up a three-month supply. The cost without insurance would have been $1,400, but even with coverage, we paid $648 out of pocket. That’s still outrageous.

Families like mine need to be able to afford their necessary medications. I’m sharing my story in the hopes of creating change for others and for my son.