Type 1 Diabetes and the Insulin Crisis

Note from Editor: Abigail is a member of DFLSD41 living with Type 1 diabetes. This her 1st blog post in a series of posts dealing with her personal struggle with diabetes, her experience as outreach coordinator for Minnesota #insulin4all, as well as the issues surrounding the skyrocketing price of insulin. Please join us January 29th at 6PM at Columbia Heights Library for a forum where Abigail and others will be discussing the cost of prescriptions and medical care. Info and RSVP here

My name is Abigail, and I have somehow made it this far in life, despite substantial obstacles and barriers. I have been living with Type 1 diabetes for 24 years. At the age of six this devastating diagnosis was something I couldn’t compartmentalize. It consumed me.  As I sat on my hospital bed, I vividly remember a nurse pulling over a tray with several syringes. I felt a loss of my senses, and suddenly, I couldn’t breathe. I experienced my first anxiety attack as the nurse told me that I would need to take shots of insulin everyday, multiple times a day, for the rest of my life. In that moment I searched for a reaction from my parents, I didn’t feel I could trust my emotions and looked to them for reassurance. If I am being completely transparent, in the moments that followed I thought of my family and how this would weigh on them. I felt the pressure of great responsibility. However, not the kind of responsibility most kids worry about, this wasn’t my mom pleading with me to clean my bedroom. I had to learn how to save my life. I had to adhere to proper mentation and discipline well beyond my years. With six years of innocence behind me, I was now searching for whom I was supposed to be. Needless to say, diabetes fractured my life in a way I was not prepared for. The terrifying reality was that, without insulin even for a few hours, I could die.

In 1996 access or affordability was not a concern. Insulin was $20 a vial, It was a pillar of the household and there was never a short supply. If insulin was ever a financial burden growing up, my parents never spoke of it. Now, people living with diabetes are living in crisis. They have been struggling to overcome barriers such as: unaffordable health plans, navigating prior authorization and formularies, or simply going without insulin and tragically dying as a result. It is no secret that insulin prices have increased at alarming rates over the last 30 years. We have been burdened by a 1200% list price increase since analog insulin hit the market in 1996. There is simply no reassurance from manufacturers that these lock-step prices, used as bargaining chips between manufacturers, will relent.

 I can admit that I have had to ration my insulin at various times in my life. At the age of 18 I was working full time as a medical assistant, while attending part time nursing school. I aged off of my parents health insurance, but felt I had made preparations by obtaining health insurance through my workplace. As I approached the pharmacy to pick up my prescriptions I was mortified by the out of pocket costs. I had no idea what to expect. But, when I found out that one vial of insulin was nearly $200, my heart sank. I don’t use one vial of insulin per month, I use three. The total cost of my life essential medication was over $600.  I made the decision to put back all of my other prescriptions. This meant my testing strips, syringes, emergency glucose, and more was no longer an option. Over time it became impossible to afford my insulin. Every time I would pick up my insulin the price would increase more and more. My blood sugars were running high, and most of the time I was unaware of what my blood sugars were because I didn’t have my testing supplies. I started rationing food so I would require less insulin. Eventually I was missing school and work due to sickness. It became hard for me to keep up and ultimately my academic advisor suggested I take a step back to focus on my health. I found that with the absence of school, I had more time to work. I pushed forward and insisted that I just needed to make more money to afford my insulin. My young adult life was becoming grossly limited and defined by the cost of insulin. Within the first month of trying to navigate a complex and unmerciful healthcare system on my own, I was admitted to the hospital with diabetic ketoacidosis (DKA). It wouldn’t be the last time.

DKA is the result of too much sugar in the bloodstream. This happens when there is a deficiency of insulin to properly break glucose down and be used as energy in the body. DKA compromises every system of the body, including vital organs and brain function. The physical pain during this process is profound. I often describe the feeling as being a fish out of water, with glass fibers coursing through my bloodstream. In this state the only way to bring the body back to homeostasis is by hospitalization. Between early 2008 and late 2009 I suffered DKA seven times. On one occasion, the last vial of insulin I had fell off of my bathroom counter and onto the floor. It shattered. I grabbed a syringe to try to draw back what little I could off of the floor, but it wasn’t enough. I was rushed by ambulance, in respiratory distress, and fell comatose on the way to the hospital. I would remain in the Intensive Care Unit for six days. When I am forced to reflect on that time, I realize how lucky I am to still be alive.

I decided something needed to be done, and I wasn’t going to find a solution on my own. I took to social media circa 2010 and started a support group for people living with diabetes. Soon I saw that insulin affordability concerns were widely prevalent. People started to share their stories, collaborate on ideas, and I found that I no longer felt ashamed of my situation. I was blind sided when I learned that people frequently utilized the internet for black market insulin and supplies to avoid the unfathomable costs at the pharmacy. This wasn’t just a problem in the small  Minnesota town I lived in, this was a national crisis. A national healthcare crisis that birthed a worldwide grassroots advocacy movement: #insulin4all.