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Every month I worry about being able to stretch my insulin to my next paycheck.

Iowans with Type 1 diabetes share stories about the high cost of insulin: One Iowan writes that he would accept small increases, but “insulin is a lifesaving drug. I must have it or my life will end.”

After the Register published an editorial on the high price of insulin, Iowans contacted us to share their stories. Here are excerpts from a few:

“As of this year, I will have had Type 1 diabetes for 30 years. I was diagnosed around 5 years old. I remember my parents’ worry about being able to afford all the insulin costs, testing supplies and doctor visits. They shielded me as much as they could, but I had a sense of their fears.

“As an adult, I was unable to afford my insulin costs, even with insurance. I quickly learned to ration my insulin to spread it out for as long as possible. I lost massive amounts of weight and often went into diabetic ketoacidosis. But, having lived with high blood sugars for so long, I became quite adept at treating this by myself instead of going to a hospital where I would add more health-care debt.

“Even now, with a steady job, the help of my parents and my husband’s insurance, insulin is still expensive. I used to get a box of 4-5 insulin pens each month. In mid-2018, that changed. I now only get 2 or 3 pens (depending on the insulin) per month for the same cost. I asked my pharmacist why this changed. He said insurance wants to deter patients from sharing their leftover insulin with others each month. I have numerous side effects from the many years of high blood sugars, caused in part by insulin rationing. I don’t know how I have been able to make it out alive after so many years, relatively healthy, when so many others have not.”

— Roxanne Strike, Ames

EDITORIAL: Iowa man loses job, health insurance, access to insulin and his life. When will Congress act?

“I have been searching for years for an outlet to voice my frustration with the rising and frightening costs to manage this illness. I am 59 years old and was diagnosed at age 16. For four years I had no health insurance, and paid for all of my supplies out of pocket. I have never skipped or reduced the amount of insulin I need. However, the costs are dramatically higher now that I fear if I lose my insurance, I do not know how I would survive. This is a crisis for many families. I recently heard Chuck Grassley say, ‘We need to get to the bottom of this.’ I appreciate that he is involved, but we are at the bottom.”

— Anna Sobaski, Iowa City

“When I was diagnosed with Type 1 diabetes at the age of 11, I had no idea how much of a financial burden the disease was. All I knew was I couldn’t eat what I wanted, I had to prick my finger 10 times a day, and I had to give myself four shots a day. It was a real struggle dealing with all that. But it was also a real struggle for my basically single mom to pay for all of the lifesaving, extremely overpriced supplies. Oh, and then double that for my younger sister as well. I was the second one to be diagnosed in less than a year.

“My mom had to buy double the amount of insulin. Double the needles. Double the test strips. Double the ketone sticks. And she didn’t have a choice. We don’t have a choice.

“I am now 21 and have health insurance, but I struggle to pay for my supplies. A bottle of insulin that lasts me a little less than a month is on average $40-$60. Test strips per month are $80. My supplies for my insulin pump including cartridges, sites, and sensors are about $300-$500 every two months. Every month, I stress over being able to afford my supplies. Every month I worry about being able to stretch my insulin to my next paycheck. I’ve recently debated starting to cross the border to buy my insulin in Canada.

— Jasmyn Cooper, Davenport (recently moved to state of Washington)

“I was diagnosed with Type 1 diabetes in January 2000 when I was 12. I was lucky that I didn’t have to worry about the cost of insulin for the first 16 years, but then I was prescribed a form of insulin not covered well by my insurance, and I was paying up to $500 for a month-and-a-half supply. While I was eventually able to switch to a form of insulin that was covered better by my insurance plan, facing those kinds of bills at the pharmacy made me want to advocate for lower insulin costs, so that others didn’t find themselves struggling to pay for their insulin the way I had. I started encouraging people to contact their legislators and the media, and I got involved with the #insulin4all movement on social media.”

— Allison Bailey, Ames Read more

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Every month I worry about being able to stretch my insulin to my next paycheck.