Saturday, August 27, 2016

EpiPen Scandal

It's been all over the news lately, so I'm guessing you've probably at least heard of the recent EpiPen scandal. Yep, that's what I'm calling it because there really isn't a better word to use. According to the dictionary, scandal means "an action or event regarded as morally or legally wrong and causing general public outrage." I think this whole EpiPen situation sufficiently qualifies.

I am incredibly thankful and grateful that my insurance is such that these changes have not impacted me...yet...I am not naive enough to think that I am immune to insurance issues coming in the future (have you read any of my blog posts???) =P

But just because this issue is not affecting me personally right now, doesn't mean that I don't feel like I'm right at the heart of this issue. This is NOT just an issue of price gouging by out of control pharmaceutical companies. This is not the first time that all of a sudden there has been a huge spike in medication prices, but this time it's not just a medication to control symptoms or manage a chronic condition. This is literally a life saving medication.

(DISCLAIMER: I'm NOT at all insinuating that price spikes for any medication is okay. This is a huge issue that overall needs addressed.)

This is not a matter of, well if you don't take this medication then over time you'll start having worse symptoms. Or if you stop taking this medication you'll start having more debilitating symptoms that down the road could cause permanent damage.

When sudden anaphylaxis hits, you have minutes...if you're lucky...

This is the difference between a 6 year old who touched bean bags filled with peanut shells at school making it to the hospital alive or not.

It is the difference between a parent of a college student getting a call that their son died because he picked up the wrong cup at a party and talking to him on the phone the next day.

It is the difference between a daughter making it home from summer camp after being stung by a bee and her parents saying their last words to her that morning at drop off.


I'll be honest, it feels weird to say out loud (or write...out loud??) that my life was saved by my EpiPens 16 times last year. In the moment, I'm not thinking about that and it doesn't feel like that. It's not until after the fact that I think about what using my EpiPens actually means. My criteria for using my EpiPens is when I'm having trouble swallowing or breathing due to throat swelling. I'll deal with all sorts of GI cramping, dizziness, itching, hives, nausea, coughing, wheezing, sense of impending doom (it's real people!), etc. but once my throat starts swelling...game over.

We use my EpiPens as soon as my symptoms cross that invisible line from throat tightness and wheezing to actual swelling and closing. Thankfully so far, my symptoms have always resolved within minutes. But those 90-120 seconds of waiting for the epinephrine to kick in are TERRIFYING. Struggling to breathe, feeling my throat close, being unable to swallow because of the swelling...there is no other way to describe that...doesn't matter how many times it has happened...each time feels equally as scary.

And that's why it is UNACCEPTABLE for EpiPen prices to be skyrocketing like they are. This is not a vitamin or day-to-day management medication. This is literally life and death.

A parent should not have to decide whether her kids get lunch money for the semester or if she is going to restock the EpiPen for her child's peanut allergy. A college student should not be faced with buying books or EpiPens at the beginning of the semester. No one should be wondering when they use their EpiPen if that means their next reaction could be their last because they know there is no money to refill the prescription.

And what about those of us that may use these way more often than we would like? Thankfully that is not me so far this year, but it could be. It was last year...and I have friends who have use dozens in a very short period of time just to survive...How in the world do companies think we can possibly afford EpiPens at $600 each???

If we're going on the number of EpiPens I needed last year, that's over $2400 for just EpiPens alone...I don't know about you, but I don't know any chronically ill patients who can afford even 1 pack of EpiPens at $600 let alone what we might need to survive!!!

I don't like getting involved in issues like this. Honestly, I'm right there with you...tired of seeing these stories appearing on facebook...it could be so easy to keep scrolling...but I'm asking you to please don't...for me, for my friends, for parents with kids with allergies, for everyone who will be diagnosed with a life threatening allergy at some point in their lives (it could be you)...

It's been a couple of months since I have need to use an EpiPen, but I still never leave the house without them. Part of the challenge of mast cell disease is that I can get anaphylaxis from known triggers but also completely out of the blue from nothing. Thankfully, my medication protocol and the addition of Xolair has made a huge difference for me, but that doesn't mean I'll never need another EpiPen. Just 3 weeks ago I was in the ER for anaphylaxis...next time it might not be as convenient as just going down 2 floors from my doctor's office...next time I might not have the luxury of getting epinephrine from the nurses in the ER.

So far this hasn't increased my cost, but believe me when I say it's crossed my mind. We are already discussing and praying about possible out-of-pocket expenses for me to see a doctor who doesn't take insurance. What if we're also having to come up with money just we can refill my EpiPens??

It might not have raised my cost of EpiPens yet, but that doesn't mean this isn't hitting incredibly close to home. That's why I'm writing this blog post. When my friends' lives are on the line and could be mine in the future, it's not time to sit back and watch from the sidelines. This is why I speak up to raise awareness for mast cell disease and other chronic conditions that I live with. If those of us living with this every day aren't willing to speak up, how can we expect others to?

If I can ask one thing of you, it's this: Please share!

If all you do is read and share, THANK YOU! Help me give a glimpse of what it is like to be living with life threatening anaphylaxis and wondering how these CEOs can put a price on our lives. Help me raise awareness for what EpiPens mean to me and those of us who never leave home (or a room...I have one in every room of the house) without them. Help me make some noise about how this is not just a matter of increased prices for some medication...this is a life and death decision being made by people far too removed from those of us rely on EpiPens to save our lives.

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