My name is Randall and I’m from Iowa Park, TX. I was diagnosed with type 1 diabetes when I was 10 years old, and my daughter Emma was diagnosed at the same age in 2013.
Growing up, I was the only person in my immediate family with diabetes, so I remember clearly having to learn everything about how to manage the condition on my own. I also had to attend counseling to understand the aspects of living with a condition for which there’s no cure.
My diabetes was very difficult to control in the beginning, and it resulted in diabetic ketoacidosis, as well as eye and kidney conditions. I can’t imagine the mental anguish my mother must have felt having a child who was constantly in and out of the hospital. At times, it was expensive for her to buy all the medications I needed.
But in a way, having diabetes is almost a blessing, because I’m able to give my daughter the guidance I didn’t have. Emma watched me deal with the condition every day, even during the times I had to be hospitalized. When she was diagnosed, she asked the nurses when she would get an insulin pump like the one her dad uses. She even goes to the same diabetes summer camp that I attended as a kid. Our experiences with diabetes have allowed us to share a stronger father-daughter bond.
Emma and I both take Humalog. I’ve used Humalog for decades now, but the prices have drastically increased. In 2000, three boxes of insulin pens cost $210. This year, Emma’s prescription of six boxes of pens cost $2,864. On top of my insulin and Emma’s additional Levemir prescription, our medications for this one condition come with a price tag of tens of thousands of dollars annually.
Additionally, over the past year or so, I’ve had several eye surgeries to address some complications of diabetes, and I had to pay for a percentage of the costs over the $100,000 insurance mark. Before the surgeries, I received Avastin eye injections, which cost a few thousand dollars each injection. I also take medication for kidney damage prevention.
We are lucky to have decent insurance coverage, but we reach our out-of-pocket maximum of $6,000 very early on each year. My kids don’t see the judgment calls I have to make about whether to pay a bill or copays for insulin. If insulin were affordable and I didn’t have to worry about the costs, I would feel a lot less mental exhaustion about how to make ends meet.
Emma is going to be a high school senior this year. She’s extremely well rounded: She’s a varsity cheerleader, she loves to paint and draw, and her dream career is in medicine, either as a nurse or a diabetes educator. Diabetes carries a certain stigma, and people have a lot of opinions about what you should and shouldn’t do. I’m so proud of her for pushing through that, and I want all type 1s to be able to to pursue their goals without being limited by diabetes — and that starts with having affordable insulin.
