The Cost of Staying Alive


Since the age of 4, I have lived with chronic health conditions. It started with an ear infection, which turned into developing a chronic heart condition called a complete heart block resulting in the need for a pacemaker at the age of 25. At the age of 15, I had corrective surgery for my spine, which had developed serious scoliosis. Five weeks after this surgery I was in the hospital again being diagnosed with type 1 diabetes.

It was not until about the age of 24 that I started to experience first hand the cost of staying alive. Up until then I had been able to stay on my mother’s cushy state health care coverage provided to her as an employee of the state of Vermont and to me up until the age of 24. I knew that my insulin was priced at between $50-100 a vial when I was first diagnosed, but until I had to figure out insurance on my own, I had this sense of safety and a worry-free mindset. I did not think about costs or how I was going to get supplies.

My first experience as a person with type 1 diabetes with my own insurance was being on Medicaid due to being in college still and the state deeming the insurance my college provided inadequate. There was this great program that was attached to it that I was able to sign up for that provided full coverage for all appointments and supplies that were diabetic related.

Then there was the day I received a bill for my testing supplies. I called the insurance inquiring as to why I was being billed for this when it was supposed to be covered at 100 percent. The agent I spoke with assured me that this was indeed an error, and it would be taken care of. I breathed a sigh of relief as the panic of being a full-time college student with virtually no income subsided.

Several days later I received a phone call from another agent. They proceeded to inform me that they had spoken with the pharmacy director and that ACTUALLY only insulin and insulin delivery devices were covered at no cost under the program I was part of. When I reiterated that this was not what the guidelines of the program stated and asked the reasoning that my testing supplies would not be covered the reply I received was this: “Testing is not life necessary ma’am. Only insulin and what is needed to deliver the insulin is.”

I was in a state of shock at hearing this. I hung the phone up in stunned silence, still not believing what I had just heard. I do not know whether the over $300 bill I was now again facing as a college student with no stable employment was more astounding, or was it the fact I had also just been essentially told that it was only necessary for me to have an insulin vial on hand and forget actually knowing what my blood glucose was. A better statement to me would have been: “Ma’am, it’s like the lottery. To dose or not to dose that’s the question of our time and hope you end up lucky. This incident was when I first felt the feeling of having to fight for my life.

Today my insulin (if I was uninsured) is going for $300 a vial. I am working in a psychiatric hospital as a mental health worker and not as a therapist in a mental health agency not only because of my background, but also because the insurance I receive here provides me the coverage I need to be able to live. Turning down jobs due to the insurance being so poor or so expensive or both has been a very real reality of mine.

Hearing the CEO of Eli Lilly state that insulin prices are rising due to diabetes being such an expensive disease likely left me looking the closest to Medusa or Broom Hilda that I ever will. My husband, turning to me, and stating his perception that I am essentially renting my life for approximately $30 a day makes more steam come out of my ears than Old Faithful produces. Thinking about presidential elections and explaining to others the fact that my life is not just in my hands but in a whole country’s, leaves most still apathetic. People don’t typically worry about life necessary medication that’s needed for some to stay alive.

How crucial this topic is to the welfare of someone living with not only diabetes but also any chronic condition. I still hope and have faith that the majority of our country desires each and every human to live a healthy life. Do you think you could while living in a constant state of the unknown, with intense anxiety and feeling out of control of your healthcare? We have to cope with chronic wondering if we will have what we need to successfully manage our health, what we need to stay ALIVE.

The decision rests on a whole society. This is chronic illness … this is diabetes in the United States of America. Unification on this topic and being an ever-present voice on this issue and educating others are keys to the movement towards change I believe. Our lives are NOT for profit!! When you meet a person living with a chronic illness, there is one very important question to ask yourself before assuming anything. Ask, “Do I really understand what it costs to stay alive?”

WRITTEN BY Charity Shuster-Gormley, POSTED 06/06/16, UPDATED 08/04/23

Charity Shuster-Gormley is a native Vermonter who currently works as a mental health worker in a psychiatric hospital. She is also a patient ambassador with The Betes Organization. She was first diagnosed with type 1 diabetes in the summer of 2000 at 15 years old. Charity holds a bachelors degree in psychology and a masters degree in Marriage and Family Therapy. She lives with her Husband, 6-year-old Dachshund Amos, and 10-year-old cat Bella. Her passions include learning, animals, helping others and advocacy.