On May 8, 2015, Alec was feeling sick. For days, he had been dealing with what seemed like the flu, throwing up, painful leg cramps, sore muscles, and having to get up several times a night to use the bathroom. That afternoon, he concluded it was time to visit a physician. A few hours later, he called me with news that would change all our lives. According to the results, he only had 1 type of diabetes. He had just turned 24. At first, I couldn’t accept it. I had always believed type 1 diabetes only happened to kids. It was a terrifying moment for our whole family. We threw ourselves into learning about the disease and figuring out how we could help Alec manage it and stay healthy.
That same day, Alec posted online:
“Today I discovered that I have type 1 diabetes”. Some may not think it’s a big deal, but I wouldn’t wish this on anyone. Take care of your body and treasure every moment.”
He realized that purchasing his insulin was more logical. Diabetes is an autoimmune disease where the body attacks its pancreas, stopping it from making insulin. It isn’t caused by anything someone does or doesn’t do, and there’s no way to cure it right now. Insulin is added to people’s routine if they have that 1 type of diabetes.
When Alec turned 26 on May 20, 2017, he was no longer covered under my health insurance plan. From that point on, he had to come up with around $1,300 a month to pay for his insulin and the supplies he needed to manage his diabetes. We had already started looking at health insurance options, but what we found was incredibly frustrating. Alec worked full-time as a restaurant manager and made a decent living, but his job didn’t offer health insurance. He didn’t qualify for Medicaid or any financial help available through MNSURE or the Affordable Care Act. The only plans we could find ranged between $300 and $800 each month, and all of them came with huge deductibles, some as high as $10,000. The plan that allowed him to keep seeing his doctor would have cost $450 a month, but the deductible was still $7,600.
After thinking it over, Alec chose not to buy insurance. He figured out that paying for his insulin made more sense. But when money was tight, and he couldn’t afford a refill, he started using less insulin to create what he had to last until payday. He never mentioned to us that he was doing that.
I wish he had. We would have assisted him instantly. Knowing he didn’t ask hurts so much, and I still wonder why.
On June 27, 2017, Alec was found dead. The cause was Diabetic Ketoacidosis, something that happens when a person with type 1 diabetes doesn’t get the insulin they need. His reason for death was he was financially struggling, so he couldn’t afford such medicines.
Alec was full of love and laughter. Telling jokes and making others laugh were his things to make people laugh. He was passionate about sports, especially Minnesota teams, and loved being outside—whether hiking, camping, or fishing. He enjoyed music and going to concerts and festivals and was happiest spending time with the people he cared about. He had just moved into his place and was proud to be independent. I don’t think he truly knew how dangerous it was to take less insulin than he needed. I also wonder how much support or education he got after being diagnosed.
Since losing Alec, I’ve been speaking out and fighting for change. Insulin has become unbelievably expensive. In the last 20 years, the price has gone up more than 1,200 percent. Even people with insurance find it hard to keep up with the costs. I wish to see pharmaceutical companies responsible for their actions. We deserve to know what it costs to make insulin and how much profit they are making from each vial. We’ve been asking, and there are no clear answers so far.
I’m sharing Alec’s story because no one should feel alone. If you’re living with diabetes or know someone who is, know that there are people out here trying to make things better. Alec’s story brings awareness, sparks change, and helps prevent another family from going through what we have. After Alec died, I felt isolated. But I’ve since learned we are far from alone, so we keep speaking up.
