What It Feels Like to Run Out of Insulin

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Outside Heathrow airport, my heart beat like I was sprinting, but I was actually standing stiff as a Royal. I was having a diabetes-related panic attack. It never gets talked about, but panic is a real diabetes complication. Diabetes, in fact, is a leading cause of panic attacks in people with diabetes.

Here’s what happened this time:

My husband, our three children, and I were on a seven week trip in 2015. We’d stopped in London for two days en route from our home in Tel Aviv to New York. We didn’t have much luggage because we planned to buy the kids new clothes in the U.S., where they’re cheaper than in Tel Aviv. The only thing we’d packed a lot of was insulin. A generous two-month supply. We knew that if we ran out and had to buy insulin in the U.S., it would cost many hundreds of dollars for just a month’s supply. Buying insulin in the U.S. was not in our budget. In Israel, the list price of insulin is around $30 per vial, and because of the health care system, which operates like a single-payer system, the cost to us is only a fraction of that (around 10%). We don’t have to worry about being able to afford the next bolus because our out of pocket cost is around $10 a month.

Two days before my panic attack at the airport, when we checked into a hotel in London, Mike stored our big bag of insulin in the hotel’s refrigerator (not a room refrigerator, but a hotel kitchen refrigerator). And even though we reminded ourselves ten million times not to forget the insulin when we left for the airport, we forgot the insulin when we left for the airport. I could blame it on being distracted by my bickering kids, or a subconscious attempt to forget about diabetes, or just tell the freaking truth: these things happen.

We were more than halfway from our hotel to Heathrow when Mike realized we didn’t have the insulin.  We called the hotel to ask if they had it. They did. There was not enough time to turn around, drive back to the hotel to pick up the insulin, and still make our flight. So, we asked the hotel to immediately give the insulin to a driver to deliver it to us, and we’d wait for him outside so he could just pull up and hand it off.  If all went well with traffic, we could get the insulin, and we’d probably still make our flight. We waited and waited and waited. The insulin did not arrive. We called the hotel. The hotel tried to track down the driver. We called the hotel again. If we didn’t leave now, there was no way we’d make the flight. Mike kept checking the reservoir on his pump. There was enough insulin to get him to New York, but then what? Pay a few hundred dollars to see a doctor to get a prescription and then spend $1,000 or more on insulin? 

“You guys run and try to make the flight,” he said to me and our sons. “I’m going back to Tel Aviv. I can’t travel without insulin.”

Mike’s fear of traveling without insulin was contagious. Once he’d said it out loud, my panic attack began.What if there was an emergency and we got stuck somewhere? Would there be enough insulin in Mike’s pump? What if we landed but couldn’t get to a doctor right away?

If you don’t have diabetes, you don’t know what it feels like to think you might run out of insulin. Imagine, then, running out of water. All you have is a half a bottle, and then nothing. Or, what if the water was for sale, but you couldn’t afford it?

When I first started working in diabetes almost a decade ago, I was repeatedly impressed by pharma giant, Novo Nordisk. I worked on a project with them, and was invited (sponsored trip) to Copenhagen in 2012 for the release of their DAWN 2 study results. The DAWN studies examined the impact of diabetes on emotional well-being. Oh, wow, Novo Nordisk definitely cares about people with diabetes, I thought. Look at how much they put into helping people with diabetes around the world. But during the same years as the company studied the wishes and needs of people with diabetes, the price of insulin nearly tripled. And as I watched the price of Novolog increase, it became apparent that Novo Nordisk cared more about profits than people. Sure, there were individual employees who were good people and who really cared about people with diabetes. But, at the end of the day, the price of insulin defines the company’s character. And at today’s price of $295 for a single vial of insulin (Mike uses 3 per month), it’s safe to say that Novo Nordisk (along with Sanofi and Lilly) is cloaked in Melania Trump’s jacket.

Diabetes advocates are not going to stop demanding lower insulin prices until insulin is affordable for everyone. If we could boycott insulin makers, trust me, we would.

Ay’ there’s the rub.

Right now any of the big three insulin makers could go down in history as a diabetes hero, the first one to lower the list price of insulin, and begin the process of fixing the pricing problem. Or they can continue as companies that put profit over person. 

My Heathrow airport insulin retrieval story ends well. We found the driver with the insulin. (He was inside. We were outside.) We made our flight.

In the three years since then, the price of insulin in the U.S. has continued to rise. It’s time for pharma to stop circumnavigating the problem with discount cards and meaningless price caps, and start really listening to people with diabetes.

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Denise
Denise

I hate to be a jerk, but this isn’t a story about what it’s like to run out of insulin. This is a story about what it’s like for your husband to forget his insulin, and then to get it back with no repercussions. If everyone could have this fairy tale ending, life would be grand.

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