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The chaotic industry behind the insulin I need to live

The chaotic industry behind the insulin I need to live

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Fifteen years in, and not much has changed

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In the winter of 2005, I was so severely underweight and starved of energy that I went to great lengths to provide my body with any source of sugar. That included chugging a brilliant cocktail of Skittles dissolved in warm water. My sisters thought it was gross. As I sipped my drink, we watched Law & Order: SVU on television, but my vision was so blurry that I could barely make out which characters were which. Their voices helped. Later that night, I was jerked awake in my bed by simultaneous charley horses in each of my legs. My calf muscles were so contracted that my feet flipped up towards my face, something you only see in exorcism scenes from horror films. And, just like in The Exorcist, I wet myself. This wasn’t the first time in the past week that this all happened. It was the fourth.

Something was truly wrong with me.

The next day, my pediatrician pricked my finger and applied a tiny drop of blood onto her hospital-grade glucometer, a device that measures how much sugar is coursing through my veins. The display showed 896. I asked her what it should read. “One hundred” she replied after a long pause. “You have Type 1 diabetes.” I was told I was hours away from a coma. My father rushed me to the hospital.

If this had happened a century earlier, it would have been a death sentence. But today, living with Type 1 diabetes is possible, thanks to one thing: insulin. My body wasn’t producing enough of the hormone, which helps convert sugars into energy, and that meant that I needed an assist from artificially produced insulin. Just weeks after my 15th birthday, I started a daily regimen of three to four insulin injections coupled with upwards of 10 finger pricks per day to monitor my blood glucose.

Fifteen years later, diabetes management has improved beyond my wildest dreams. Syringes have been swapped out with insulin pumps, and finger pricks have been replaced with sensors embedded under the skin. But my insulin? That has pretty much stayed the same. And that’s fine — except for the fact that the price of that same insulin has nearly tripled since I first started using it.

Mean expenditure per patient for insulin, 2002-2013
Mean expenditure per patient for insulin, 2002-2013
Data: JAMA

There is a whole lot of finger-pointing and reasons why — from lack of competition to fuzzy legal hurdles surrounding the approval of next-generation drugs — but all of these reasons have led to nearly half of the world’s diabetic population without proper access to the drug. When that happens, diabetics are forced to ration their insulin, and some are even trying to manufacture insulin themselves.

In honor of National Diabetes Month, Verge Science’s latest video takes a look at the issues surrounding insulin and what might be in store for the drug — and for people like me who rely on it every day — in the years to come.

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