Twenty months ago, I was diagnosed with type one diabetes – this is insulin-dependent, and nothing I did brought it on me. It’s an autoimmune disease, and I may have inherited a tendency for it, or I may have just acquired it. Nothing I eat, or don’t eat, has anything to do with this diagnosis. My BMI is in normal range.

In 2017, when I was diagnosed, we quickly learned the limitations of my insurance. While previously hospital insurance as a registered nurse has been fantastic, the corporation that took over my hospital brought with it an epically bad health care plan. I had to meet a $3000 deductible before I could begin seeing benefits. That meant $600 a month insulin. I quit that job after six months of this terrible insurance. I simply could not afford it.

I’m now on my husband’s policy, and up through last year his insurance was fantastic. Durable medical equipment, i.e. my insulin pump and continuous glucose monitor, were covered at 100%. Insulin was still expensive, but not as expensive as it had been with my prior insurance.

This year’s insurance has changed. Now durable medical equipment is only covered at 90%. That sounds fantastic – until you realize that every quarter I will be paying $600 for diabetes supplies alone. I had to get a prior authorization to get my test strips monthly, locally, with a coupon – or that would be another $200 quarterly.

Don’t get me wrong – I am extremely grateful that we have insurance. We pay handsomely for it! That being said, I don’t understand why it’s so darn expensive to keep this diabetic alive.

I am very compliant – I keep close tabs on the carbs that I eat, and the medical equipment I use helps me keep my blood sugar under much tighter regulation. Eating less carbs means using less insulin, and it saves me money, as well as keeps me healthier. (Note: I’m on a diet that is approved by my endocrinologist. I am not keto! I just don’t eat the high carb diet of most Americans.)

I could save money by going back to multiple dose injections of insulin, but that’s a lot of pain and heartache and hassle. It also does not control my blood sugar as well as the devices I use. I look at my medical devices as a form of preventative medicine. In the long run, they keep me out of the hospital, out of my doctors office, and keep me healthier – which is good for every single system in my body. So I don’t look at these devices as a luxury. They are a necessity.

It’s a necessity that a lot of people cannot afford. People without insurance, or people with crappy insurance, do not have access to these devices. And insulin is obscenely expensive without insurance – so diabetics, who did not have any part in their diagnosis, are doing drastic things to try to stay alive. Like rationing insulin. It’s extremely dangerous!

I’m disgusted by this whole gouging the consumer mode that big Pharma uses every single day. Specifically for diabetics, who, once diagnosed, have the disease for the rest of their lives. A disease that affects every single organ system in their body. A disease with horrible long-term sequela if it is not managed well.

I’m determined to take the best care of myself that I can. I log everything that I eat, I exercise regularly, and I’m in close contact with my endocrinologist.

There’s only so much I can control, though. Endogenous factors such as hormones, illness, and many other things we don’t even know about, all contribute to a day in the life of a diabetic. The stress of having to come up with money to pay for the very equipment and medications I need to survive does not help.

I will keep advocating for diabetics, writing my legislators, getting on board with advocacy groups. I will keep trying to be heard.

I hope that one day soon this punitive pricing will change, and type 1 diabetics will not be punished for a disease that they did not ask to have.

In the meantime, it’s back on the phone for me – trying to find all the ways I can get discounts or coupons or help for my medications and supplies necessary to live.