August 19th, 2016 by Karen
I have an allergy.
It’s not small.
It’s not an “allergy du jour”. It isn’t a personal choice. It’s not something that just makes me feel bad and then I get better. It isn’t something to get attention.
In fact, it’s pretty fatal.
I am allergic to bees.
I wasn’t always allergic. I was stung often as a child and never had a reaction until I was about a sixth grader or so and that changed. For the better part of my life now, I have had to carry an emergency bee sting kit. The first one was a little orange box that came with me everywhere. It lived in my backpack all through junior high, high school and college. It contained 4 antihistamines in a blister pack, an alcohol prep pad, a string tourniquet that was green (that stuck in my head) and a loaded syringe. The syringe was a little tricky…the plunger was a set of offset rectangles and you had to uncap the needle, press the plunger until it stopped, rotate the plunger, jab yourself in the leg and depress the plunger again to inject. There was also a second dose in the syringe, but you weren’t supposed to use it unless you needed that much epinephrine all at once. Then, you had 40 minutes or less to get to a hospital.
Thankfully, somewhere along the way, the kit was modified. Gone is the useless tourniquet, the antihistamines and the alcohol pad. The EpiPen is a self contained autoinjecting syringe. You take it out of its plastic case, remove the safety tab and slam it against your thigh. It auto fires, you hold it in place for 10 seconds, and that’s that. It’s an incredible improvement over the former version because you don’t have to think about it at all and it takes just seconds to use. Believe me, when you’re terrified and struggling to breathe, thinking goes right out the window.
Kits typically come in pairs with a tester blank (no needle) so you can practice or show others how to use it. They come in pairs for a damn good reason. Sometimes, a single dose doesn’t work and some severe allergies require two. You take the shot and there’s some relief and then suddenly you’re gasping for air again. There’s ZERO predictability with this. There’s no test. Just sometimes, you need more meds than other times. As my friend Todd says, two is one, one is none.
The symptoms of anaphylaxis aren’t a walk in the park. When I’m stung, it’s as if someone has suddenly set my skin on fire. The sting site burns intensely and swells excruciatingly quickly. (Thankfully, I’ve never been stung in the face or neck, but the prospect scares me terribly.) My chest starts to constrict, I struggle to breath, and I get very, very dizzy and have to sit down to avoid passing out. The best way I can describe this to someone who has no allergies is that it’s like someone is holding your head underwater and you desperately need to take a breath, but instead you’re going to drown and you’re also on fire. The after effects last for days. Sheer exhaustion, the shakes, the nausea. The last time I was stung, it took more than a week before I was really recovered and then I still had a raised rash on my thigh where I was stung that was about the size of a dinner plate for more than two months. After that, it blessedly stopped itching, but then the whole thing became oddly scaly and discolored and lasted for about 6 months. Very unpleasant.
EpiPens are not something you take for fun. It’s not a recreational drug. It makes you feel absolutely AWFUL in about 10 seconds flat. It’s your most stressful day, 5 pots of strong black coffee, and the biggest panic attack ever all rolled into one. You can feel the drug race through your veins. It hits like a freight train. You’re suddenly drenched in sweat, your whole body is shaking, and you just want to throw up everything you’ve ever eaten. These feelings last for hours. It’s horrible, but you’re breathing, so you’re grateful and just head to the hospital for the follow up, because sometimes even two doses isn’t enough.
The last refill, I paid somewhere in the vicinity of $125 out of pocket, or a little more than $60 per injector. Kind of high I thought at the time, since before that, it was around $80 for the pair, but it’s not a choice. I had to have it. You’re supposed to replace your EpiPens every year.
Now, the company that makes the EpiPen, Mylan Pharmaceuticals, has hiked the price to $500 or MORE. This is $250 per injector, more than twice the price I paid for a pair previously. It’s an enormous price increase, and one that thousands of families will struggle to absorb. Mylan has been big on touting that they offer a coupon, but it only reduces the cost to $400. Not much of a savings.
For those families, they will weigh the exorbitant price increase against their personal safety and the safety of their children. Some will decide to take their chances and switch to carrying around just strong antihistamines and hoping that they don’t have a severe reaction. Some will push the limits and not replace their expired EpiPens, hoping that the slow degradation of the drug will provide them at least a little safety. Some will grumble and go ahead and purchase new EpiPens, but not because they support Mylan, but because their allergies are too severe to survive without the refill in their pocket. There will be an uptick in severity of hospital visits and likely an increase in related deaths as well.
Me, well…my EpiPens have expired.
I know they last longer than just a year. I know that they are still usable if the liquid is still clear. I know that they are less effective than they were. I know that I should replace them. It’s Russian Roulette not to.
But summer is almost over and maybe, just maybe they’ll be forced to rethink their pricing in the next month or two.
And then I’ll get my refills.
I know I’m going to need it again someday.
Because it’s not really a choice.
If it were, no one would choose to be allergic.