My insulin would cost me more than my tuition.

My name is Hattie Saltzman and I am 22 years old.

I was diagnosed with Type 1 diabetes in 2013, when I was 16 years old. For the first couple of years, the price for my insulin was low. Two vials cost $125, which would last me a month. In 2017, we got on a new insurance plan and the copay suddenly skyrocketed from $125 to $550. It turns out my insurance was only covering $100 until I met my deductible of $6,000. At this time, I was 19 and paying my own college tuition.

It was amazing, really, that my insulin would cost me more than my tuition that year.

I applied to patient assistance programs and tried to get coupons, making every attempt to lower my drug costs. But I was denied because I had insurance. You always hear about people falling through the cracks, and I had become one of them.

I didn’t fill my prescription the entire year. My family and I looked at different options. We even thought about reaching out to an uncle to ask him to help pay for the insulin, but we didn’t want to have to do that. My dad is also diabetic, so we broke the law by sharing our insulin for a while. This was our last resort but also our only option. I worry about him, too. He’s on Medicare, so all sharing did was push him into the donut hole — a coverage gap in Medicare where patients are subjected to huge copays — faster.

I started rationing expired insulin, which landed me in the ER in September of 2017. I received a bill for $3,300 shortly after. To try to put off the costs, I sent pay stubs and tuition bills showing I had no possible means of paying. They lowered my payment to $150.

What I learned was that my emergency room visit was cheaper than insulin would have been in the first place.

A family friend with cystic fibrosis and Type 1 diabetes passed away. Her mom gave me all of her leftover insulin –– a three month supply. The donation of free prescriptions is illegal, but insulin-dependent patients understand that we may sometimes have to break the law to save our own lives.

Today, after changing insurance coverage, I pay a $25 copay for a 30-day supply. But I worry for the day I lose coverage, and I know the patchwork of systems that makes medicine affordable can change without notice, on the whim of a drug industry executive. We need legislators like Claire McCaskill who will stand up for patients against big pharmaceutical corporations and help protect patients like me.