#insulin4all movement fights everlasting insulin crisis

A guest blog by Kristen Whitney Daniels |

When I was first diagnosed with type 1 diabetes 13 years ago at the age of 15, I was assured by my doctors at Yale that a cure for this life-changing disease was on the horizon. They told me confidently that one day I could say goodbye to my daily injections of insulin, the drug I must take to survive.

Today,13 years later, that dream seems more like a fairy tale than it ever did. For how can I even begin to hope for a cure while diabetics are dying because they don’t have access to affordable insulin?

Since the 1990s, the cost of insulin has increased over 1,200 percent. Type 1 diabetics’ spending on insulin nearly doubled from 2011 to 2016, increasing from $2900 to $5700.

Studies show that one out of every four diabetics have been forced to ration their insulin — the potentially deadly practice where diabetics reduce their insulin intake, often utilized to make their insulin last longer in response to financial strains.

Due to the precipitous increase of insulin prices, I am living that statistic – I am one out of four.

In 2016, at the age of 26, I was forced to navigate America’s complicated health care system after aging off of my parent’s insurance. I settled on the best plan I could afford: a high-deductible plan that would save me financially should something catastrophic happen.

But the deductible in the plan was an entire month’s salary. It would be impossible for me to pay it without forgoing food, housing, and transportation. So, as I neared the end of my insulin supply, I did what seemed like my only option: I started rationing it, hoping that by eating less food, exercising more, and running dangerously high blood sugars I’d buy myself more time to save up for the deductible.

When I reached the last precious drops of that very last insulin vial, I braced myself as I went to the pharmacy to fill my prescription. I knew it would be expensive but I naively believed I could find a way to make it work. Instead, I was faced with an out-of-pocket price tag far larger than my salary or my savings.

I was shaken but undeterred — there had to be someone out there that knew I wouldn’t live to see another day without this prescription. I called my pharmacy, I called prescription assistance programs, I called the insulin manufacturer, I called every program out there that was intended to help people make ends meet. Instead, I met the same answer at every call: you don’t qualify because you have insurance.

I had run out of options and I had run out of insulin. My terror continued to climb, along with my blood sugars. It’s difficult for me to put into words what that day truly felt like; I was at the end of my rope with no hope to light the way. I wasn’t just frustrated and I wasn’t just angry, I was left feeling completely insignificant. Suddenly my very survival was defined only by my finances, or the lack thereof – that the greed of prescription drug companies to maximize their profits mattered more than my life.

I am incredibly lucky. While my story doesn’t necessarily have a storybook ending — I still struggle to meet the financial demands of being a diabetic — I got to live another day. In a last ditch attempt, I landed at a community health center where I paid only $14 for a month’s supply. A $2386 discrepancy from what I was expected to pay at the pharmacy.

I cannot stress this enough: there is an insulin crisis in our country. People are dying right now in the United States for the entirely preventable reason that they can’t afford their insulin — a drug whose patent was originally sold for $1 by its inventor so it could be accessible to all.

This year I found a way to turn my painful experience into a means for change. In January 2019, I joined T1International and their #insulin4all movement and became the CT#insulin4all chapter leader. T1 International is a non-profit advocacy organization that doesn’t accept funding from pharmaceutical companies, run by and for people who have or are impacted by type 1 diabetes.

Our chapter knows patients hold the power to create meaningful change in our state and nationally. The CT#insulin4all chapter is currently advocating for policies that ensure insulin and supplies are truly affordable for all. We vow to hold policy-makers accountable.

I know that our voices matter. At one point in my story, I wasn’t positive I’d even see tomorrow. Now, with every word I share and every story I pen, I am fighting back against a system that has questioned and threatened my existence at every turn. T1International and the #insulin4all movement has shown me that our collective voices are stronger than any company attempting to make a fortune off our bodies.

To learn more about the CT#insulin4all chapter, please visit our webpage, our Facebook group or you can email the group at CTinsulin4all@gmail.com for more information.