Diabetes Blogs

Why We Should All Protest the High Cost of Insulin

Insulin Isn't Optional: ADA GraphicIn 1999, when I was first diagnosed with type 1 diabetes, my insulin vial cost $20. Today the very same vial of insulin costs $395!

Imagine getting diagnosed with a life-changing, incurable disease at the age of 13 that you had nothing to do with. That's what happened to me. My first thought was...

My life is over.

Next, the doctor tells me that I would need to inject—inject!—a medicine called insulin that would serve as my life support because my pancreas is broken and has stopped producing insulin on its own. 

I absolutely hate needles. 

It was an emotional, overwhelming and confusing time for me. The good news is my father is a pharmacist, so he took care of my prescriptions.

Back in 1999, my insulin vial cost around $20. Fast forward 19 years. Today, my insulin cost $395 a vial! I go through a vial about every two weeks. And this is just ONE of my prescriptions for diabetes.

This vial of insulin has not changed in its formulary, the price has simply increased. Like many Americans, I also have insurance with a high-deductible, so in the beginning months of the year, I’m stuck paying thousands of dollars out-of-pocket until I hit my out-of-pocket max. I am basically a cash cow for pharmaceutical companies, pharmacy benefit managers, pharmacies, insurance companies, etc. But I’m kind of stuck—they know I rely on insulin to stay alive so I have to buy it.  Insulin is not optional for me. 

How You Can Get Involved in the Fight Against High Prices 

This is why I’m flying to Indianapolis this weekend to protest these practices—along with many other fierce, fellow diabetes advocates—on the grounds of Eli Lilly for the #Insulin4all demonstration. 

I’m passionate about raising my voice in protest because we will not see change if we don’t demand it from the top. Alec Smith’s mother Nicole will be adding her voice to mine. Alec passed away last year in my home state of Minnesota because he couldn’t afford his insulin a month after he was kicked off his mom’s insurance due to his age. 

In much of Europe, insulin costs a fraction (about one-sixth) of what it costs in the United States. If I go north to Canada, a vial of insulin would set me back about $45. A recent study showed that approximately one-quarter of people who live with diabetes in the US are restricting insulin today because they can’t afford it. Change needs to happen here in the United States. 

Will you join me in advocating for this change? 

There are several ways you can help put pressure on the decision makers and be involved even if you can’t join us in Indianapolis this weekend—though I’d love it if you can!

  1. An organization called T1 International is hosting the event on Sunday in Indianapolis. There's a charter on their homepage you can sign to show your support.  
  2. The American Diabetes Association has created a protest petition and is calling on Congress to hold hearings on the issue. To date, 377,207 people have signed it. Visit the site to add your name to the growing list. 
  3. The website GoodRx has insulin savings coupons and a chart comparing the prices of various brands. Note: Bear in mind there is no generic version of insulin and just three manufacturers—Eli Lilly, Novo Nordisk, and Sanofi—control the vast share of the market. 
  4. OnTrack Diabetes story about why the cost of insulin keeps rising. 

And if you can join us at Eli Lilly, please look for me. I’m the one with the big mouth wearing the gray T-shirt that says, "Access to Insulin is a Human Right"! 

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