T1International has recently spent a lot of time speaking to people living with type 1 diabetes in USA, where insulin prices are increasingly unaffordable for more and more people. Below, we share excerpts from three stories to continue to illustrate the depth and injustice of this problem. 

If these stories seem similar to something you are going through, or if they make you as angry as they make us, please sign the Type 1 Diabetes Access Charter, download the Advocacy Toolkit, and join us in the fight for #insulin4all. 

Janette Sohm, Texas

When I was diagnosed with type 1 diabetes 38 years ago (March of 1979), my insulin cost my parents $10 a vial. Now, my co-pay for my insulin is $40 for the brand my insurance company wants me to use, or $60 for the brand that works better for me. If I choose to use my local pharmacy, and get my supplies for 3 months at a time, I have to pay the full amount of $120 for each Rx. If I use the insurance company and get everything via the mail, I only save $20.

As of right now, I have to figure out how to pay for my insulin, and I could only get a 1-month supply of test strips at my local pharmacy the last time I went. The test strip companies are no longer offering co-pay assistance discounts either. When I started testing my blood glucose instead of using my urine in January 1982, test strips cost about $1/strip. Thirty-five years later, test strips still cost $1/strip, and some companies charge a lot more!

Jared Hooten, Ohio

After I graduated high school, I worked at a local GM plant in Dayton, Ohio. College was an intriguing option, but at that time (it was 1999) navigating the insurance "marketplace" as someone with a life-long, chronic condition was futile. Most insurers would not even talk to me because of my type 1 diabetes. So, I decided to stay covered by working as a labourer which ultimately was not for me, but the wages and health benefits were excellent.

I eventually decided to study while working part time, but I could not find a way to afford my diabetes costs. I was denied Medicaid twice and tried state, national, and PAPs to get the medicine I needed while in college. This took its toll on my body and mind as I was spending more time either worrying about, or actually trolling the local charity pharmacies, than I was studying. Depression took hold and damn near took my life. I took out one huge Personal Student Loan to cover my tuition, lodging, and medicine. I was certain I would eventually obtain some kind of assistance, but it never happened. Many local agencies, PAPs, and individuals were helpful, but eventually the insulin well always ran dry. So I continued to take out smaller loans on top of my Federal Aid to help with costs of insulin and supplies.

I graduated in May 2011 with a B.A. in Music. I was financially and mentally depleted, but I would have loved to have the opportunity to study without the worry. Now I work at another factory in my hometown largely for the benefits offered. I work second shift and do tedious work. I owe a bunch of money to a bunch of people and cannot pay a good portion of it. This is embarrassing to say, but I recently moved back to my parent's home to try to save some money, ugh!

I am feeling good but now understand that I want to devote my life to diabetes. Unfortunately, to obtain the licensing and credentials needed to become a CDE are out of reach, and out of touch. I want to become some kind of Diabetes Psychologist, run camps, lecture, etc. but one needs capital to gain the skills and experience, which I do not have.

Madison McMillan Meadows, Illinois

I am 25 years and I was diagnosed with type 1 diabetes ten years ago. I am lucky to have always had health insurance, although that could change soon. I will be 26 in May and will no longer be able to be under my mom’s insurance plan. Diabetes has been a huge financial burden to my family. 

I come from a family of educators, so that right there points out there was never a lot of money to begin with for my family. Before my mom’s retirement two years ago, she paid $700 dollars per month for our health plan. Now she pays $500 on the retirement plan. Additionally, we have to pay a deductible of $1,000-1,500 each year. Neither the deductible nor the monthly bill covers my individual doctor appointments that I am supposed to have every three months. These cost roughly $200 per visit with the endocrinologist. With insurance, my prescriptions come out to being $80-120 each month. This does not include the times I have dropped a bottle of insulin and had to pay out of pocket for a new one or the times when I run out of blood strips before health insurance will cover a new supply.

My rough calculation from the past ten years is $80,000 for my insurance, deductibles, insulin and diabetic prescriptions, insulin pump supplies, doctor appointments, and out of pocket costs. My parents had to sacrifice a lot in order to afford everything I needed to manage this disease.

I used to use Lantus and Novolog. Now I only need to use the fast acting insulin because I am on an insulin pump (still need Lantus handy in case my pump fails). One day my pharmacy told me I could no longer receive Novolog because my insurance would only cover Humalog, so I was forced to make the switch. There was of course no explanation, but it was clear my insurance had a new deal with the makers of Humalog.