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The Crucial Point That's Being Missed in the EpiPen Conversation

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Before this starts, let me just say. I am, myself, affected by the EpiPen problem. I, too, have noticed the price increases (though luckily our insurance does cover them), and I get “it.” So before the internet “haters” are going to hate, let me be clear, I’m not arguing with you.

Ever since the first EpiPen post came up on one of my social media feeds, it’s just “rubbed me wrong,” and by that I mean it’s made me want to reach through the internet and grab people by their shoulders and shake them until they gain some insight! Here is why.

This is not news! This isn’t some new conspiracy that’s just popped up overnight! This isn’t suddenly a new concept. I believe the problem is not just the cost of the EpiPen, the problem is that the media has let people think that’s the problem, and that it’s suddenly a “new” problem.

The EpiPen price has been increasing over years, not days, as has the price of other rescue meds, daily meds, and medical necessities on the market. All of these items have the potential of being just as life-or-death as an EpiPen, and all of them are way beyond the reach of thousands of people who need them.

I myself have advocated for these issues, and similar ones, since becoming a special needs parent. I also know hundreds of others through special needs networking who have been advocating harder and longer than I have. I’ve experienced the judgement that almost always comes along with advocating. Friends and family of ours who have openly, and not so openly, judged our own advocacy through the last few years and have suddenly posted several of these EpiPen articles and news updates.

On one side of things, this is great. Finally, something has gotten through to the world. All this advocating we’ve been doing while fighting through the judgement is finally paying off. On the other side, it’s beyond upsetting. The world has finally crossed that line into understanding even just a fraction of what the special needs community goes through, and yet they are missing the point.

I believe the problem is not EpiPens. The problem is these policies have been around for so long, and are upheld by such powerful and “popular” people, that nobody has been listening to the minority of us this entire time. I think this could have been fixed long ago if even just a few more people had stopped judging the special needs advocators, and started listening to and supporting them. Tens of thousands of people have been, and still are, drowning in these policies at an even greater cost than a couple of EpiPens.

I’m not saying we shouldn’t fix the EpiPen problem. I’m saying we should start looking at the big picture and fix thousands of problems at once, before it’s too late.

Follow this journey on Extraordinarily Unordinary.

Originally published: August 29, 2016
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