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End insulin rationing and prioritize Build Back Better

Money is tight for my family of six. Between paychecks, I have to choose between paying for groceries and filling my insulin prescription. Most weeks, there is nothing left in our monthly budget for my medication, and I have to go without my life saving medication.

Leanna Tsinajinnie

Eventually, the prolonged high-blood-sugar levels will take a toll on my kidneys and I’ll need dialysis. It’s a path I watched my father go down, and I realize that it’s one I’m starting down as well.

My father was 40 when he developed Type 2 diabetes, and I was just 33. We live on the Navajo Nation Arizona reservation, where diabetes is far too common, because healthy food choices are few and far between. The closest town to our house has one grocery store, one gas station, and a dollar store. The next town over isn’t much better, with the only restaurants being fast food chains. And, like many rural areas, we lack adequate health services, so we have a heightened risk of dying from preventable diabetic complications.

I watched my dad struggle to afford insulin for years. When the price was too high at the pharmacy, he wouldn’t fill his prescription. His only other option for affordable insulin was a two hour drive away. And during winters with heavy snow, he struggled to make the four hour round trip. So, he rationed or missed doses altogether. After more than a decade of this, he developed kidney failure in 2019. At just 63, he will need to undergo kidney dialysis three times a week for the rest of his life.

Now, I find myself in his shoes. Last year, I developed gestational diabetes when I was pregnant with my youngest child. When the doctor first diagnosed me, I was terrified for the health of my baby. Concern for my own health didn’t quite hit me until I went to fill my first insulin prescription.

I don’t recall how much I paid for my first prescription, but I remember being shocked that the price was so high. I didn’t realize that the health insurance we pay so much for, would cover so little. At present, I pay $70 a month out-of-pocket for my insulin. That, along with the additional $100 I spend each month on diabetic supplies, stretches our budget almost to the breaking point.

I’ve gone as long as a week without insulin waiting for the next paycheck to arrive. When I don’t have insulin, I try not to eat, since food makes my blood sugar spike. But the hunger makes it challenging to find the energy to keep up with four kids. I try my best to push through the headaches, fatigue, and increased thirst and hunger, so I can be the perfect mom and stay positive even when my body is attacking itself.

Living paycheck to paycheck means I won’t know if we’ll have enough for my insulin from one week to the next. I hope that I won’t have to ration my insulin in the future, but there’s a good possibility I will. 

Fortunately, there’s a small glimmer of hope on the horizon for diabetics struggling to pay for their medication — but only if Congress prioritizes President Biden’s Build Back Better plan. It would cap insulin costs at $35 a month, saving diabetics like me hundreds of dollars each year. In a country where 1 in 4 diabetics report rationing their insulin due to the high price, this policy is long overdue. Cutting my insulin costs in half could save my kidneys and maybe even save my life.  

For the 34.7 million Americans living with diabetes, insulin affordability is a vitally important issue, especially in indigenous communities. I’m not surprised when I hear that Americans pay 2-3x more than citizens of other wealthy countries for the same medication. Because in America, pharmaceutical companies hold the cards and for diabetics like me, it’s either pay up or suffer.  

Every year there is talk about reducing insulin prices, but meaningful change rarely follows. My father and I are left to live with the very real consequences of Congress’ inaction on insulin prices. With Biden’s plan, Congress can fulfill its decades-long promise to reduce insulin prices and save lives in the process. I urge Arizona’s senators to stand up for diabetics like me and pass the Build Back Better plan. 

Leanna Tsinajinnie lives in Houck, Ariz., on the Navajo Reservation with her husband and four children.

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