Amanda

I’ve lived with type 1 for more than 24 years now. I was diagnosed right before my 10th birthday. Looking back, I was blessed to have been on my parent’s insurance, because at 18, I was “uninsurable”.

I had racked up medical bills because I thought I was still insured. I was in debt before I knew what debt was. I was waiting tables, failing community college, and uninsurable. However, my insurance in Tennessee told me they would cover me if I “stopped taking insulin.” This was the early 2000s, and Novolog was around $65 a bottle. I wasn’t prepared for the first price increase and was short on cash. The pharmacist fronted me the insulin. I felt so guilty and paid him back as soon as I had the cash.

My life has revolved around insulin. How much do I have left? Where can I get some? Do I have enough money? I’ve not paid bills, had my lights cuts off, slept in my car, and have not had food, just to have enough insulin. I’ve rationed insulin for so long, I can’t throw empty bottles away. My fridge is full of empty pump reservoirs and insulin vials. I know there’s one or two more units I haven’t gotten out yet, so I keep them.

I am blessed to have had insurance for the past 4 years. “Blessed”, like I didn’t sell my soul daily working a meaningless job that took half my paycheck for my healthcare. No matter how many times I erase this, and try typing it again, I sound bitter. Should I be thankful? I wonder what my life would be like if my healthcare wasn’t always in some sort of bureaucratic limbo.

I know how I sound, but I’m honestly not angry I have type 1. I’m angry I have type 1 in a country where chronic diseases are nothing but profit, and where pharmacy benefit managers control what insulin we can take. Capitalism will kill all of us. In the states, more money is spent on advertising than research. Advertising—like that ever saved a life.

Most diabetics are apathetic. If they can get their meds then everything is fine, but it’s not fine. People are dying. We’re dying and no one seems to care.

Nicole

My son, Alec Smith, recently passed away from Diabetic Ketoacidosis. He passed away, home alone, at the age of 26 on June 27th 2017. He was 2 weeks shy of the day he was first diagnosed with Type 1 diabetes at age 24.

From what I have read, every 8 seconds someone dies from diabetes, I don’t know why, in this day in age, people are dying from this when it is something that can be managed with proper education and access to the medication and supplies.

And here lies the problem; people don’t always receive the proper education to live a long healthy life with this disease. Not only that, but the rising cost of insulin and supplies makes it very difficult to follow doctor’s orders for treatment. Even when my son had insurance, he was spending about $200 a month for his supplies and insulin. When he turned 26, he lost my insurance because of his age and his expenses for his diabetes were about $1300 a month. Honestly who could afford that? My son died because he was trying to ration his insulin. From my research, I can tell you that dying from DKA is a very painful death, and I want to prevent as many deaths as I can.

My son was in the prime of his life, he had so much to look forward to. I will never get to see him fall in love, marry the woman of his dreams or raise a family. I will never get to see him tackle the dreams he had. I will never get to spend another Christmas or birthday with him, he will never get to see his daughter grow up and he will not be there on her wedding day to walk her down the aisle.

Over the 2 short years that Alec had diabetes, I saw how the insulin cost had steadily risen each year and how stressful that was for him. I saw how all the stress and fear took a toll on his health and his outlook on life. Why is it that, in America, the pharmaceutical companies set the price without justification as to why?

That’s a great question. Why is this happening? How are millions of people slipping through the cracks? Why are we living in fear because we cannot afford to “breathe”? Insulin is oxygen; price gouging cannot go on. This is my plea—our plea— and we are in desperate need of change.