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How the exorbitant cost of insulin affects Illinoisans

One in four diabetics ration their insulin. To ration insulin means taking less insulin than necessary for meals, to lower high blood sugar, and to maintain blood sugar levels at a healthy level (baseline dosages). Rationing insulin has led to numerous deaths, and can cause serious complications, and yet, a quarter of us do it. In Illinois, where the estimated number of type 1 diabetics roughly equals the size of Urbana (44,000 people), that means that around 11,000 people ration their insulin. To put that in perspective, Savoy has a population of around 8,000 people.

More people in Illinois currently ration their insulin than live in Savoy.

We ration because many of us pay full list-price (the cost before insurance coverage) for our insulin – $300 per vial, roughly three vials per month. We pay more for our bodies to stay alive than we do on rent, so we cut corners and skip dosages. Because of insulin rationing, many people have died, and many more live in terror of an excruciating death. We cannot live like this, and yet extortionate insulin costs force us to live this horror, to choose between bill payments and medication, groceries and doctors’ visits.

When I founded the Illinois chapter of #insulin4all in August 2018, I didn’t know how bad the cost of my health could get. I thought I did — my family lost our insurance during my college years, during which Lilly Cares, a patient assistance program through Eli Lilly, covered my insulin. I rationed my supplies to make ends meet, frequently using insulin pump supplies longer than their recommended use. But I never rationed my insulin.

Last Fall, after using up all my sick days to manage my health, I resigned from my position with Unit 4 and I signed up for COBRA insurance. My insurance plan was an easy decision when compared to the other high-deductible plans available. It’s easy to commit to $600 insurance premiums when the list-price of my healthcare costs $2,200 each month. Unfortunately, what my family made each month fell short of our cost of living by $600.

The additional $600 we paid each month, my monthly insurance premium, nearly ruined us.

In March, two days before I testified in front of the IL House Prescription Drug Affordability & Accessibility Committee, I started a GoFundMe campaign to raise the money needed to keep me alive. The week before I received my acceptance letter for U of I’s iSchool PhD program, so I knew that we just needed to get to August. I assumed my family would experience the best-case scenario for the six months between posting my GoFundMe and starting my program, so I asked for just what we needed. I assumed wrong.

Despite exceeding the fundraising goal, the money didn’t get us very far. Tax season caught us by surprise. I had a series of bad health weeks and couldn’t make it to my job at Starbucks, eventually leading to another health-related resignation. We ran out of options by May, and I vividly remember sitting down with all my remaining insulin and calculating how much I could take each day until my university insurance policy began. It came out to two meals’ worth, plus my baseline doses.

Those calculations tipped me towards true insulin rationing — the kind that results in deaths. For months, I pulled every trick I knew to make my insulin last. I call it insulin-rationing-lite, because I changed my diet to avoid taking insulin (what’s up, boiled eggs). I skipped meals. I reused needles. Yet I had never truly restricted my insulin through forced fasting and skipping doses. Thankfully, in the end I didn’t need to ration my insulin. Literally hours after crunching my dosages, I learned I could start my program over the summer. My early start had a cascade effect on my health. Suddenly, I could afford my insurance, I could utilize McKinley pharmacy’s subsidized prescriptions, and I could apply for student loans to get us through the summer.

I came excruciatingly close to making a decision that could’ve cost me my eyesight, my limbs, or my life. And while I did restrict my insulin for months through diet and quirky habits, I didn’t ration my insulin the way Kayla Davis did, when she went days without a dose. Nor did I ration my insulin the way Antavia Worsham did, borrowing from family members until they had nothing left to give. I’m alive. It didn’t get as bad for me as it did for them.

I began our chapter of #insulin4all to make sure no one in our state experiences the excruciating death of diabetic ketoacidosis (DKA), brought on by insulin rationing. When I started the chapter, I didn’t know what support exists in our state for people like me. I had no idea that in a little over a year, we would have multiple state legislative allies in Andy Manar, Will Guzzardi, and Governor J.B. Pritzker. I didn’t know that we would be working to pass a bill that would cap monthly out-of-pocket insulin costs for diabetics across the state.

Last week, Illinois Senators, including our own Senator Scott Bennett, recognized the necessity of affordable insulin when they voted 48-7 in favor of passing SB0667, which would cap monthly out-of-pocket costs for insulin. If passed, the bill would ensure many diabetics would not have to pay more than $100 per insulin prescription each month, meaning that for some diabetics — especially those on high-deductible plans — their monthly prescription costs could drop as much as 90%.

The bill currently has 39 representative co-sponsors, including Representative Carol Ammons, and has passed out of committee. The House of Representatives will vote on the bill later this week. Should it pass, SB0667 will go a long way in our effort to make Illinois safer for diabetics. I encourage you to call your representatives, thank them for their support, and join us in the fight for #insulin4all.

Photo from Illinois #insulin4all Instagram page

Editor’s Note: This bill passed the Illinois House today. Due to some changes, it will now need to go back to the Senate. You can read more here.

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