National Diabetes Month
My journey with Type 1 Diabetes started two weeks before my sweet 16— yes, it’s okay to giggle. This upcoming year will be my ninth year as a diabetic. Since the day of my diagnosis, diabetes became my first priority, but when colliding with other complex life experiences and the constant challenges that come with living with diabetes, I found that there was little motivation to go through the rigorous routine of being both the nurse and patient 24 hours a day, 7 days a week. But, it was within that defeat that brought me closer to other struggling diabetics and the very shallow barrier we face everyday that is life or death.
History of insulin and patents
“Insulin does not belong to me, it belongs to the world.” - Frederick Banting
Insulin was invented 100 years ago by Frederick Banting and his team: Charles Best and James Collip. In 1923, the three released the patent on their world changing medicinal invention for only $1. Before synthetic and animal insulin, Type 1 diabetes was a death sentence, giving the patient only one week or less to live from the time of diagnosis. Starvation was the only way to ‘prolong’ life.
As medicine and technology evolved, so did the types of insulin that were being offered to diabetics. New forms of insulin that cut down on the amount of injections, or that altogether served a different and significant purpose, started appearing. Unfortunately, with these new breakthroughs in modern medicine, came the greed of big pharma and private patents.
Currently, I rely on NovoLog insulin to keep me alive. NovoLog is an insulin made by Novo Nordisck. The patent for NovoLog is privatized, meaning no one outside of Novo Nordisck can replicate NovoLog.
An average cost of one bottle of NovoLog out of pocket is $312. One vial lasts me 8-10 days, equalling an out of pocket cost of $11,388 a year.
To this day, there are no existing generic forms of insulin, meaning there is no affordable way to acquire insulin worldwide.
Modern Technology
In addition to insulin, there are ever-evolving new technologies to work with diabetics on living a more ‘normal’ life. When I was first diagnosed I held lots of resistance against insulin pumps— which are devices that administer the insulin delivery for you; no more math and less frequent injections. Although the pump sounds like a positive, life-altering technology, I was insecure about the pump and the idea of walking around with a tube attached to me. There would be no hiding my diabetes— it would be a bulky, robotic, new addition to my body. Yet, after a series of self-neglect while I was only using shots, I found that hiding my diabetes was a death sentence. Realizing this too late and barely conscious in the ICU, I left the hospital a week later with an insulin pump.
In 2016, I received my first form of insulin pump: the Medtronic Paradigm (Model made in 2010). Because of the $20,000 out-of-pocket expense for the device, I had to commit to this form of technology and treatment for 5 years. No potential upgrades. No switching to other devices. I didn’t think about the potential consequences this would have until my paradigm sent me into DKA twice. The first time was at fault of my pump educator. They had failed to mention that because of the nature of the tube being plastic— the tube inside and out of my body could bend, manipulating the amount of insulin and even blocking the insulin entirely from entering my body. Just before I took a vacation, I decided to change my injection site. I hopped on the flight thinking I was struggling with food poisoning, and was in the ICU hours after I landed with DKA. This little piece of information could have costed my life. It made me feel dumb— but how could I have known? It hadn’t happened before and no one had told me it was a potential problem.
The second time I was in the ICU with DKA was because my pump’s motor had died— displaying MOTOR ERROR in large letters on the screen. Error? But I was relying on this for my life! The real problem was that I didn’t have a backup plan and once again, at the fault of my doctor, I had no conversation about the potential of these devices failing. I was thinking $20,000?— it can’t possibly fail! Upon seeing the message, I quickly tried to figure out a plan. But because I no longer relied on syringes, I no longer had a prescription for them, and I was left with no way to give myself insulin. I quickly called the doctor on call to see if she would answer in the middle of the night so I could receive a prescription in the morning but it was already too late. Only 6 hours without insulin, and I was off to the hospital with DKA. I didn’t get the prescription I had asked for, for another week— but I did get a $60,000 medical bill for my 36 hour stay.
I don’t write this to complain, only to remind myself that now, in the future of Diabetic technology, there are still issues and malfunctions, and the only way to live an easier life as a diabetic is to take on the emotional and physical challenge that comes with trusting new technology, the medical field, and myself.
The life of a diabetic is far from fluid. There are complications in everything— eating, exercising, traveling, paying medical bills, keeping track of prescriptions, etc. Yet, 100 years ago I wouldn’t have gotten to eat my sugar-free cake at my sweet 16. Instead, here I am living birthday to birthday. It’s the finest line of growth and decay.
I was the first Type 1 diabetic in my family to be diagnosed. This, and my late diagnosis, was a head-scratcher to my first Endocrinologist. Usually with Type 1 Diabetics, a diagnosis is made at an even younger age, and there is a genetic history of it within the patient’s family, but, given the circumstances at my life in that moment, he concluded that my Type 1 Diabetes was stress-induced.
For the past nine years, I have seen just how fragile my body is with just one small missing part. Although I find myself defeated from the dinner table to the doctor’s office, I revel in the triumph that is modern medicine and the absolute perseverance that every Type 1 Diabetic faces. See, every morning, Type 1 Diabetics force themselves to make the conscious effort (despite complication after complication) to stay alive, and that is one reason in itself to remain brave and resilient inside my body. It is in the magical and rapid growth of the medical field, that I can feel myself blooming once again. I have experienced the precarious balance of life and death as a diabetic, but choose today to revel in the absolute miracle that is seeing another morning.
Thank you for stopping by and taking the time to read and/or look at a sliver of my journey with Type 1. Feel free and drop a comment about anything blog related or diabetes related— would love to keep the conversation going.
xoxo Kylie