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The Illegal Things People Do to Survive With Diabetes

I have type 1 diabetes — a lifelong, minute-by-minute autoimmune disease that requires copious amounts of medication, monitoring and money to stay alive. I am not one to complain, but instead, I want to share the reality of what life is like living with a disease like type 1 diabetes.

That includes doing what is considered “illegal” in order to avoid being another diabetes mortality statistic.

I am one of the thousands of people without insurance. That means the various medications needed to keep me alive on a daily basis have to be paid for in full out of pocket.

Diabetes is the leading cause of lower body amputations, kidney failure and retinopathy as well as the seventh leading cause of death in the United States. Without insulin, people with diabetes can suffer debilitating health complications.

Access to insulin is at an all time low and that pushes people to do whatever it takes to stay healthy. But it wasn’t always like this.

Quick Background On Insulin

Insulin was invented in 1922 and later sold the patent for $3 to the University of Toronto. Three major pharma companies (Eli Lilly, Novo Nordisk, and Sanofi) monopolized the medication so that no affordable generic could be made. This skyrocketed prices, hitting $60 a vial in 2004 to over $300 a vial in 2019.

To give you an idea what that means, I personally need two vials of insulin a month and one to two long acting insulin “pens” a month. That is over $1,000 a month in medication I need to take to stay alive. These aren’t vitamins. These are life-or-death medications and I say that with zero hyperbole.

According to the American Diabetes Association, people with diabetes have medical expenditures of $16,752 per year. Factor in the average income in the United States — and that means slightly less than half of your entire, hard earned income is spent on medication to keep you alive because of diabetes… a condition none of us asked for or had any say in getting.

That’s not including blood sugar test strips, meters, insulin pumps, doctor visits, insulin pump supplies or any other costs associated with type 1 diabetes. Add rent, phone bill, food, car, gas etc and you’re lucky to have a nickel to your name.

Put yourself in my shoes. What would you do to stay alive? Imagine if your kid or spouse had type 1 diabetes. What would you do to keep them alive?

Anything.

Illegal Things Diabetics Do to Stay Alive

Imagine running out of medication that keeps you alive and seeing it costs $300+ at your local pharmacy and then seeing it only costs $30, yes, 1/10 of that in Canada and other countries. The exact same medication by the exact same manufacturer with a very different price point. How mad would you be? How frustrated would you be?

That is why I take matters into my own hands and why thousands of other type 1 diabetics do the same.

I get my insulin from other people in the diabetes community. Some people have a surplus of supplies for free because they have access to great insurance. Some people live in countries where insulin is purchased without a prescription and costs 1/10 of what it does here.

For people who struggle financially and/or don’t have insurance, the diabetes community is always willing to help those in need regardless of the legality of needing a prescription or insurance.

Some might argue that it is dangerous, which it could be if you don’t know how to manage your disease. Even more dangerous is having to ration your insulin because you can’t afford the total cost required to manage diabetes. Stories like this where people die because they have to spread out their medication use are mortifying.

The corrupt price inflation on insulin has people with diabetes resorting to supply trades via social media, patient-to-patient blood sugar management help, and “black market” medication sales so that people don’t have to choose between eating or managing their disease on a daily basis.

Has Diabetes Made Me A Criminal?

Although getting medications from other patients may be against the law, the only thing truly criminal is the price gouging going on by insulin manufactoros. Insulin is the ultimate business — a medicinal goldmine. What other item could have minimal changes over 30 years, yet increase by 500% and still have people paying for it? These pharma companies are holding people with diabetes captive as they know that people need it to survive.

Because insulin is a necessity, not a luxury, and there is minimal price regulation regarding medications, people with type 1 diabetes will continue to do what they have to do to survive. Does that make me a criminal?

You decide.

Getty image via MarianVejcik

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