For me, insulin is air, as it is for all insulin-dependent people with diabetes. There is no choice involved, and nothing we could have done would have prevented our condition. There is no remedy, diet or magic potion can make it go away. Six million Americans face this reality, and the stifling fear that they may find themselves unable to pay the hefty price tag that comes with living with diabetes.
Since the 90’s, the price of insulin has climbed steeply, now having reached an 1123% increase. Some find themselves paying thousands a month, and some have lost their lives. These are the pleas from some of those people.
I was diagnosed with type 1 diabetes when I was seven. It was an incredibly terrifying experience. No one in my family has type 1, so we were essentially helpless at the beginning. Quite frankly, we had no clue how to handle any of the treatments, supplies, etc. My family is extremely fortunate to have excellent health insurance, and my dad has a well-paying job, but we still struggle daily with balancing our financial needs. Insurance sometimes refuses to cover the most basic things.
My parents have spent endless hours on the phone with my doctor and the insurance company, fighting tooth and nail for coverage just so I can stay alive. Lately, my control has been much worse than usual thanks to sports and high school stress, so recently my doctor recommended a CGM (continuous glucose monitor). That’s been a hard battle because our insurance company is refusing to pay for the monitor, and we just can’t afford it if we have to pay out-of-pocket. I’m scared that I won’t be able to get a CGM and my blood sugar levels will continue to put me in danger. The financial struggles of diabetes puts a strain on my whole family, and I often feel guilty because I know if I didn’t have this condition, or if insurance would pay for the countless medical supplies that I need every day, my parents and brother would be much more financially stable and they wouldn’t have to make sacrifices to get me the care I need.
I have not purchased my own insulin since December 2016. Some of the insulin, pump supplies and test strips I'm using right now came from the daughter of my mom's friend, who recently passed away due to complications from cystic fibrosis; she was a type 1. Her family had no use for her old supplies and insulin, so they gave it to me because they knew I could not obtain it.
On September 22, 2017, I found myself in the ER with a blood sugar of 600+ caused by extreme rationing of insulin. Two vials of insulin after insurance cost me $500. I'm 20 years old and trying to pay for college, my car and my insulin. I don't know where I'll get my next batch, but I guess I'll figure it out.
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.
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.