People Are Rationing Their Insulin, And This Is Not Okay

by Wendy Wisner
Originally Published: 
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Type I diabetes is an autoimmune disease where your body destroys the cells in your pancreas that produce insulin. As the CDC reports, about 5% of the population have type I diabetes, and although it can affect adults too, it is usually first diagnosed in children and young adults.

The solution to Type I diabetes (and other forms of diabetes, in some cases) is to take prescription insulin shots on a regular basis. For Type I sufferers, this medication is not optional.

“People with type 1 diabetes need to take insulin every day to stay alive,” explains the CDC.

In fact, Dr. Vikas Saini tells WBUR, before insulin shots were developed almost 100 years ago, a diabetes diagnosis was a “virtual death sentence,” with the discovery of insulin “a miracle that saved countless lives.”

OK, so now that we’ve gotten that out of the way, let’s look at another statistic.

According to Dr. Saini, the price of insulin has increased by about 1,000 percent over the past 20 years or so. Yes, that’s a whole heck of a lot. And because of skyrocketing insurance premiums, or plans that won’t cover insulin (or won’t do so unless exorbitant deductibles are met first), many Americans are unable to pay for their insulin.

And remember what happens to Type I diabetics who don’t have insulin? They die. There’s no other way to say it. And the heartbreaking thing is that this appears to be happening more and more.

As Dr. Saini tells WBUR, 1 in 4 diabetics are rationing their insulin these days. And many are simply going without it until they can get the funds to cover their medication, or until their insurance kicks in.

I can’t tell you how much this makes my blood boil. Nobody – and I mean not one single soul – should die because they can’t afford medical care. What the actual fucking fuck.

For a diabetic, even a few days without insulin can be dangerous, as Bram Sable-Smith explains in a recent NPR article on the subject. Lack of insulin for diabetics can result in harm to your eyes, lungs, kidneys, and heart. It can harden your arteries and lead to heart attacks and strokes.

And if you go without insulin for long enough, you can experience something called diabetic ketoacidosis – which is extremely serious and often deadly.

“Diabetic ketoacidosis is a terrible way to die,” writes Sable-Smith. “It’s what happens when you don’t have enough insulin. Your blood sugar gets so high that your blood becomes highly acidic, your cells dehydrate, and your body stops functioning.”

Sable-Smith, a diabetic himself, interviewed a mom named Nicole Smith-Holt, who lost her son Alec last year simply because he could not afford insurance. When Alec found out that the only affordable insurance plan required him to pay a $7,600 deductible before he could fill his insulin prescription, he decided going without insurance and paying out of pocket for his insulin would be cheaper.

While he was waiting for his paycheck, his family believes he began rationing his insulin.

“He died less than one month after going off of his mother’s insurance,” writes Sable-Smith. “His family thinks he was rationing his insulin — using less than he needed — to try to make it last until he could afford to buy more. He died alone in his apartment three days before payday. The insulin pen he used to give himself shots was empty.”

These types of horrible tragedies are becoming more and more common, Dr. Saini tells WBUR, with many of his patients turning to the insulin “black market” or starting Go Fund Me’s just to afford the life-saving medicine.

And things won’t get better until we fix the health insurance crisis in this country.

“As a physician, I see this as a humanitarian crisis that demands a break from business as usual,” Dr. Saini says. “It calls for a coalition of voices, from the medical community to people with diabetes and their friends and families, from those angry about the state of health care to scientists who can see how the industry has veered away from a ‘patients first’ perspective.”


We have so much work to do in this country to make healthcare available and equitable. As a mother, I can’t fathom for one second not having access to healthcare and medicine for my babies. The idea of not being able to afford something that would mean life or death is absolutely unacceptable.

And yet, it’s becoming all too common in this country – from families who can’t afford EpiPens to cancer treatments. No child — or grownup — should ever, ever have to die simply because they could not meet their deductible or insurance premium, or because their health plan did not cover a surgery or medication.

Stories like these are incredibly heartbreaking, but they should give us all the impetus to speak out about these injustices, help our fellow citizens in whatever way we can, and use our voices to make it clear to our representatives that this sort of thing is not okay – not for one more day.

Healthcare is a human right – and should be readily available to ALL.

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