By Hunter Sego
In March of 2016, I was approaching the end of my freshman year at DePauw University. Among many new experiences that year, this was the first time I had ever gone alone to pick up my diabetes medication at CVS. I needed to pick up a month’s supply of insulin and test strips — three vials of the former, four bottles of the latter. I remember pulling up to the window and, after giving my name and date of birth, the tech asked me if I was aware how much my supplies cost. I said no, and asked her how much it was. What she told me next forever changed my perspective on life and what it means to live with Type 1 diabetes.
The cost was over $1900.
That’s not taking into consideration the monthly expenses for my insulin pump, infusion sets, insulin cartridges, or any other supply or medical device; those two medical necessities alone required $1900. In shock, I asked, “How much for just the insulin?” I could do without the strips, I figured, but without insulin, people with Type 1 diabetes will die.
So, she told me: It was still a little over $1400.
A few months before this, while I was home during break, my family’s power had been shut off. My parents told us we were going to stay with my grandparents until the issue resolved. A week after that, our water shut off, too. At the time, my mom swore to me they were mistakes by both the electric and water companies, But it was at the CVS window, when I realized my insulin cost over $400 a vial, that I finally made the connection: My parents had prioritized paying for my insulin over our utilities. Though my parents have since told me the decision was easy, I felt incredibly guilty.
Since I was diagnosed at age seven, my mom, dad, and sister have made choices in order to prioritize simply keeping me alive. I suddenly felt like I was a burden that prevented my family from going on vacation, going out to eat, and getting to experience new, fun, and adventurous things with friends, all at the cost to keep me from dying.
My parents are both college-educated and have two stable, well-paying jobs. Yet, even my family is struggling to overcome the daunting price of insulin. Today, more than 100 million Americans have diabetes or prediabetes. In 2017, diabetes was the most expensive chronic illness in the U.S., costing more than $327 billion per year — $15 billion of that cost was the price of insulin which has more than tripled between 2002 and 2013. Normally, research and developmental expenses that change the quality of insulin would warrant such a drastic hike in prices, but the formula of the major pharmaceutical companies’ insulin has remained unaltered for around the past 15 years.
The drastic rise in the price of insulin has caused one in four Americans living with diabetes, including me, to ration their insulin. That is resulting in many complications and, in some severe cases, even death. On July 12, it was 21-year-old Jesimya Scherer-Radcliffe. A few days ago, it was 27-year-old Josh Wilkerson.
It could have been me. As I was leaving the pharmacy that past March, and armed with only one vial, I decided to ration my insulin. In my mind, it made sense. If I could reduce the cost of being alive, I thought, I could reduce their burden of keeping me alive. I won’t go into the details of how, but as a result of rationing over the next three years at school, I suffered physically and mentally, in and out of the classroom. Without the insulin to keep my blood glucose in check, my body went into diabetic ketoacidosis. This is when a body’s pH drops too low, due to the breakdown of fat storages and muscle tissue that convert into ketones for fuel. Your brain suffers the most, because it consumes the most amount of energy, as it controls and conducts bodily functions and homeostasis.
I was sluggish, inattentive, more emotional, and more impulsive. Though I was a student-athlete, I did not have enough energy to carry out my daily tasks or the demands of football practice and games. I slept anywhere between 12 and 18 hours a day, and consciously allowed my body to begin shutting down. I missed or was late to classes and practices. I didn’t study. I wasn’t focused. Though most people were unaware I was even at college, a few of my friends and coaches were paying better attention than I thought. Individually, they alerted my mom. She began monitoring things more closely. At one point, I nearly died, but she caught me before it became too late. The next day, we had a heart-to-heart, and I explained all I was and had been doing. When the tears turned to resolve, I vowed never to ration my insulin again.
My question, though, is how many other insulin-dependent Americans are still rationing, even though we know the risks?
It doesn’t have to be this way, and it shouldn’t. In other countries, such as Canada, the exact same insulin can be purchased for one-tenth of the cost if purchased in the U.S. because there are laws that prevent manufacturers from gouging the sticker to pad their pockets. While I believe in capitalism and a free market, I do not believe pharmaceutical companies should be able to lord over people and lead them to believe they have no other option than buying their medication, or death.
Last week, a group of people with diabetes and I decided to meet up in Detroit so we could take a bus to Canada to purchase insulin. The trip was coordinated by Quinn Nystrom, a Minnesota native and long-time American Diabetes Association friend. Our plan was twofold: To make a statement, as well as to, you know, get the insulin we need to stay alive.
Presidential candidate Bernie Sanders accompanied us on our journey to help raise national awareness surrounding the issue of insulin affordability; for that, I will be forever indebted to the senator. It was a continuation of his work in 2016, when he asked the government to formally investigate insulin-makers on claims of price collusion. In Windsor, Canada, every major news station captured the astonishing difference in the price of insulin, as well as personal stories of the individuals invited on the trip. My family alone bought 25 vials of insulin for $1009.64. This would have cost us over $12,000 in Indiana.
Senator Sanders spoke about the greediness of pharmaceutical companies and their irresponsibility for charging anywhere between $300-400+ per vial of insulin, when each only costs $3-6 to produce. But as the senator pointed out, those companies aren’t alone in their misdeeds. In Washington D.C., senators and congresspeople routinely accept campaign donations from pharmaceutical companies, who are among the largest of lobbying groups. Tier strategies also contribute to the cost of how insulin is priced.
I believe all of those involved are causing thousands of people with diabetes to die, by effectively pricing them out of existence. And I’m not alone: Sanders said he believes the CEOs of the pharmaceutical companies should be held accountable for their part in setting the prices. “Prices go up and up and up at the same level for the same companies. So, what you do is you throw these people in jail if they engage in price fixing,” he told me while we were in Canada. “It never ends. They essentially have blood on their hands, all in exchange for living an exorbitant lifestyle.”
I don’t have the answers for how to fix this epidemic. I shouldn’t, either — I’m 22 years old. All I know is how to manage my Type 1 diabetes, and to listen to what my body tells me it needs. What it needs, what it will always need, is insulin.
For me and millions of other Americans, healthcare isn’t a theoretical party line, or an ideological talking point about who loses what coverage if the government were to intervene. It is our reality, every day, when we eat, when we exercise, when we take our medication. It is what happens when drugstore pharmacists tell us we owe thousands of dollars. It is not your buzzword or debate topic. It is a matter of life or death.