I was diagnosed with Type 1 diabetes just before I started eighth grade, and I have always been the primary person to take care of managing my glucose levels and refilling my medications. No amount of Type 1 self-advocacy would prepare me for the life-threatening event that unfolded during finals week my first year of college at Central Washington University in Ellensburg, Washington. I want to share this story so others don’t have to endure what I did.
The days leading up to finals were hell on earth, and the stress greatly impacted my blood sugar levels. During finals week itself, my blood sugar levels stayed between 190 mg/dL to 270 mg/dL. I was on insulin pump therapy and using more insulin than usual due to higher basal rates. As a result, I ran out of my “monthly allowance” of insulin.
The day I ran out, I called ahead to the local pharmacy to secure a refill. After being put on hold for 25 minutes I decided to walk down to the pharmacy and request insulin in person. I was accompanied by my saint of a significant other, who came along for moral support; he knew the severity of the situation.
Shortly after signing in at the pharmacy counter, I was met by the pharmacist, and I told him about my situation and that I needed an insulin refill as soon as possible. He said that my monthly refill was not due for another four days and that I would have to wait to pick it up then. I calmly told him I was aware that I was not due for a refill, but that I had run out of insulin and I explained to him why I needed more now. The pharmacist, now annoyed, said he didn’t know what to tell me and that he could try calling my doctor but that it “ probably wouldn’t do much.”
After waiting 45 minutes, the pharmacist said that he had just gotten off the phone with my doctor and, wouldn’t ya know it, she approved the refill order. I then sat in the waiting room, expecting the pharmacist to call me at any moment; nearly three hours passed.
Anxious and upset, I made my way back up to the front desk. The pharmacist replied, “Oh, I had almost forgotten about you. The insurance never answered, and we are closing, so I’ll leave a note for the next pharmacist in the morning.” Almost in tears, I begged him to do something. He said, “I could give you a vial now, but it’s going to cost you $230; your insurance should reimburse you.”
I didn’t have $230. I called home and my parents told me that they didn’t, either. Instead, for the next two days, I went without. I skipped meals to avoid high sugars and when I did eat, it was extremely low-carb with hardly any caloric value. I worried about whether I would develop ketones and about how my exam scores would be affected by my levels and the stress.
I wasn’t told that there were cheaper insulin available over the counter, and I wasn’t told that if I went to the hospital or urgent care that they would have given me the insulin I needed. Later, I learned the pharmacist never even left a note and there was no record of him calling my insurance. My life was casually put in danger.
It’s too common that people with Type 1 diabetes are denied insulin and other medication that they need just to make it through the week. It’s too common that people with Type 1 are charged outrageous amounts of money for insulin, forcing many to use expired insulin or go without. It’s crucial that people understand that being denied access to insulin happens, inability to pay for insulin happens, preventable deaths among peoples with Type 1 diabetes happen. Insulin must be made available and attainable at all times, and no one should ever have to go through what I went through.
Do you have an idea you would like to write about for Insulin Nation? Send your pitch to email@example.com.
Thanks for reading this Insulin Nation article. Want more Type 1 news? Subscribe here.
Have Type 2 diabetes or know someone who does? Try Type 2 Nation, our sister publication.