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I learned at a very young age that I would have to carry an EpiPen for the rest of my life. Fortunately, I’ve never had to use it, but I’ve depended on these life-saving devices since the early 80’s, just in case I got stung by a bee and my body didn’t respond calmly.
Simply carrying the EpiPen is an act of self-care as far as I’m concerned.
I have no idea how much money I’ve spent on refills over the past 34 years, or how many EpiPens are now buried beneath a landfill, but I do know that I feel comforted by the fact that I have one nearby in the event of an emergency.
The kicker is that these epinephrine sticks expire rather quickly. At most (and if you’re lucky enough to find a pharmacy that has a new supply), they last about 2 years. But almost every refill I’ve ever gotten has expired within the year.
As I set out for a 3-hour hike yesterday, I dropped the trusty EpiPen into my backpack and felt an odd sense of fear–and anger.
The fear was sparked by the realization that if a single company has the power to strong-arm pricing in the name of profit margins, then it probably also has the power to control availability. Not a comforting thought for someone who prefers not to experience anaphylaxis, even if that right comes at a premium cost.
The anger stemmed from the knowledge that I have no control over any of it. I will be forced to pay the cost, no matter what that cost is, or accept death as the alternative.
Or will I?
I have to tell you, this idea of a $10 injection kit is very interesting to me. I mean, if Dana Lewis can engineer an artificial pancreas long before the pharmaceutical industry can, then I can certainly learn how to inject myself with epinephrine without a fancy shmancy pen.
What if we, average hard-working Americans, weren’t thought of as incompetent? What if we learned to manage our own health conditions? What if we decided to be more involved in the decisions made about our care?
What if we said ‘no’ once in a while?