I carry a machine everywhere I go. Not a phone, or a tablet, or an iPod – it’s an insulin pump. It’s connected to my body with a tiny cannula that rests under my skin, pumping a fluid through 23” of tubing. I would die without it.
I’m not the only one that would die without insulin; everyone would. Most people don’t give it a second thought because their body makes it for free. But my body, and the bodies of more than 7 million other Americans, do not. This leaves us to purchase it from pharmacies at a truly damaging cost.
I’m nearly 21 years old. I’m going to college full-time, working part-time, and stressing about insulin to the point I’m having dreams I can’t get insulin and am dying. I’m somewhat of a newbie to the disease compared to my peers, who were all diagnosed early in their childhood. I was diagnosed in 2013 at 16 years old, the day before winter break. My father has Type 1 diabetes, and as a joke when I was complaining of thirst and chugging orange juice nonstop he tested my blood sugar. We were all shocked when the meter flashed the number 671 at us because we knew what it meant for me. Shortly after that I was in the ER being diagnosed with Type 1 diabetes. I was hospitalized for three days while I learned how to do injections, count carbs, and exercise safely. I got home the day before Christmas.
I didn’t know much about the disease or its costs as I had been well sheltered from whatever struggles my dad went through to get supplies. All I knew was that every few days my dad would stand in the kitchen and insert a new pump site while I watched, fascinated by the practice. It wasn’t until last year that I truly became aware of the immense problem America and much of the world faces when it comes to people with diabetes getting insulin.
It was January 2017. I was out of insulin, so I went to the pharmacy like normal and asked to have my prescription filled. The woman at the counter read the price to me: five hundred and twenty-five dollars. That was for two vials – after insurance. Two vials that would last me about a month. What followed was weeks of skimming insulin from my dad’s supply, trying out pharmacy coupons that were rejected because I was covered by insurance, and ultimately accepting that for the year of 2017 I would not be purchasing any insulin. I simply could not afford it.
My doctor was perplexed. We tried different brands. We tried to get approved for assistance that would grant me free insulin once a month. I was again denied because I had insurance. My dad couldn’t sustain sharing with me because he’s on Medicare and is only allowed to refill his prescription after a certain amount of time has elapsed. My doctor ended up supplying me with free samples of random brands. My insulin pump went into a drawer and gathered dust while I relearned how to do shots and tried to keep my blood sugars stable. I rationed insulin so extensively that it expired before I finished my supply, and I ended up in the ER for the first time since my diagnosis due to high blood sugar. I had to throw away the insulin I had held onto so tightly because it was completely useless. My doctor’s office was also out of samples to give me, so I went back to skimming from my father’s supply for a short time.
Later in the year, the daughter of my mother’s friend passed away due to complications with cystic fibrosis. She was a Type 1 diabetic, roughly my age, and her mother was aware of my struggles and gave me the rest of her insulin supply, pump supplies and countless other expensive items. For several months, the supplies I used bore her daughter’s name. Every time I inserted a new pump site, or opened a bottle of insulin, I thought to myself: I’m using a dead girl’s supplies. But if it hadn’t been for her, I may have gone some part of the year with no insulin whatsoever. I’ve read enough testimonials from grieving parents and T1D’s who brushed shoulders with death to know what could have happened.
I’m lucky to say that I was able to get better insurance for 2018 and now the same two vials of insulin cost a mere twenty-five dollars. I know that while I am this lucky, there is someone experiencing what I did last year, or worse. I know that roughly every ten seconds a person with diabetes dies. I know that this is a problem. I know that insulin should be affordable, accessible, and safe.
The question is: What will you do about it?