“…End of the Month, I Start Skipping Meals.”

People with Type 1 diabetes describe the economic hardship of the cost of their self-care.



Recently, we asked readers to share what they have had to do to be able to afford to stay alive with Type 1 diabetes. We received many replies that were difficult to read. Here is a sampling:

I could barely scrape up enough money for my bare minimum insulin needs for the first five years after diagnosis because I didn’t have insurance. I went without meters and test strips because they were/are too expensive without insurance. I had to eat less often and smaller meals so as to conserve on my insulin usage. It was a tough period of my life*.
-Melissa B.

Read “Life by the Drop.”

We live paycheck to paycheck. I wear my sites for longer than I am supposed to and have ugly marks on my skin and scar tissue as a result. I worry about what can happen by doing all this.
-Aubrey N.

I eat very low-carb to keep our pharmacy costs down to what we can afford. Diabetics should eat low-carb anyway, but to do this on a constant basis is not easy.
-Melissa H.

Read “Selling a Lifetime of Insulin for $3.”

A few yrs back, there was an issue with my insurance. For 12 days, I couldn’t get any long-lasting insulin so I had to live off my Humalog, which was a battle of highs and lows. Worst 12 days of my life.
-Brian M.

I have had to, and am still having to, re-use insulin from my pump reservoirs. So every change-out, I put my old reservoir back into the fridge, and when things are super tight and we absolutely cannot afford my insulin even after cutting out other needs, my husband pulls out my jar of reservoirs and takes a new reservoir with the syringe part still attached and he draws all the insulin out of the old reservoirs and puts it back into an insulin vial so I can re-use it. We also have had to play “chicken” with utility bills in order to afford my medical costs.
-Nicole H.

Holding off on paying rent in order to buy sensors for the Dexcom.
-Stephanie J.

When on injections, I used 2 needles a month. Family members now go to Mexico to purchase insulin for me. Toward the end of the month, I start skipping meals.
-Karen P.

There was a period of three years where my health insurance wouldn’t cover more than one bottle of Humalog every 45 days and only gave me enough test strips to check three times a day. I had to be very careful about the food I was eating, and if I was high I had to vigorously exercise. It was exhausting and upsetting.
-Brianna O.

Both of my sons have Type 1. I cannot afford to buy insulin and supplies for both of them.
-Stacie L.

Insulin makers are facing increased competition, lawsuits about insulin prices, and some government pressure to bring down insulin prices. We can only hope that there will be fewer of such stories of economic hardship in the future.

*Comments have been edited for length and clarity.

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Craig Idlebrook is managing editor for Insulin Nation and Type 2 Nation. He's written about health policy, environmental health, community health, and maternal health for over 25 publications. You can reach him at cidlebrook@epscomm.com.