EpiPens save lives; they shouldn’t be priced like a luxury

The last time I refilled my EpiPen, in November, I paid $365.63 out of pocket for two auto-injectors. I looked that number up Thursday morning after the news broke that Mylan, the company that makes EpiPens, is bowing to public pressure and will start offering discounts after years of hiking prices.

EpiPens are the latest in a series of drugs that have become cash cows for their distributors. The skyrocketing cost of the epinephrine injectors, which counteract a severe allergic attack, has been grotesque for allergy sufferers like me. Mylan has sent a clear message: If those of us with allergies want to live expansive, adventurous lives, doing things that are normal for other people but risky for us, the company is prepared to test just how much we’re willing to pay for that privilege.

EpiPens have been constants in my life since I was diagnosed with a severe tree-nut allergy as a toddler. They’ve been rolling around the bottom of my primary school backpacks and tucked neatly into the purses I carry in adulthood.

Allergies are constraining, annoying and even frightening, but living with one hasn’t been all bad.

Out of necessity, my parents taught me to be an advocate for myself. It’s not a lot of fun to be the 9-year-old at a birthday party telling your best friend’s mother that yes, the Heath Bars she’s sprinkled all over that birthday cake are full of almonds, and no, you won’t be having a piece. And as an adult, I may fumble through French and Spanish and brandish index cards with questions about food ingredients written in Mandarin when I travel, but I’ve never gotten sick overseas.

My parents also encouraged creative responses to the inevitable disappointments that allergies bring. I’ll never forget sitting with my family in a restaurant in Quebec, my mother promising that she’d find a way to bake the sugar pie that I couldn’t order from the menu because the waitress couldn’t reassure us about its ingredients. One of my earliest memories of cooking is working with her in the kitchen to fulfill that promise; I can still recall the taste of that pie, more delicious and precious because it was mine.

But for all I do to protect myself, EpiPens are a critical safeguard in case something goes wrong.

As the restaurant scene in Washington has experienced a renaissance, my EpiPens mean that my husband and I can range more widely and eat more creatively with the reassurance that date night won’t end in disaster.

EpiPens are my armor against disaster, the tools of my adventuring, the things that allow me to live without the fear that death might strike me in the middle of an ordinary experience — or an extraordinary one.

But even as I’m grateful, I think about what they cost, and not just when I pay for them.

I had a very mild allergy attack last year, the only one I’ve had in a decade. And the moment I felt my tongue go numb and my throat start to swell, I made a decision. I’d only had one bite of the kale chips that turned out to be seasoned with cashew dust. I probably wasn’t going to have to go to the hospital. And so rather than use an EpiPen that I would have to refill at a cost of hundreds of dollars, I made myself throw up instead.

I have pretty good health insurance through my job. I can afford my annual EpiPen refill, and my allergy attacks are rare. And so if I stopped to think about the cost of these drugs in the middle of a mild attack, I cannot imagine what it must be like to face the cost of multiple EpiPens a year, and to do so without insurance or without the financial backup of a two-income household.

The world has become a safer, more accommodating place for those of us with allergies in the three decades since my diagnosis. But it will be even safer and even more accessible when epinephrine — and the security that goes with it — isn’t priced like a luxury.