The Magical (Expensive and Elusive) Epinephrine

If you know about food allergies, you know how important epinephrine is. It is the only thing that can treat a severe allergic reaction. We’ve had to use it twice at home and both times I was amazed at how quickly it worked. To go from continuous vomiting, difficulty breathing, runny nose, baby in clear distress to breathing fine (although a little upset about needle jab) in minutes is nothing short of a miracle. But the fact that it is the only solution to a severe allergic reaction and a severe allergic reaction can happen at any time, means you have to have it with you at all times.

Not just one injector, though. No, you need two. With my kid. At all times. For us this mean getting four epinephrine autoinjectors- two to leave at school and two to keep at home/out to the park/with us wherever we go. For a baby this is a little easier because we have to have our diaper bag with us wherever we go. We just stick it in the diaper bag. 

What do people do once their kid is old enough to not need a diaper bag? A quick search online reveals lots of different epipen cases- pink girl ones and manly leather ones and carabiner clip on ones and fanny pack ones and ones that look like a stuffed lion. Presumably something for everyone. I just find it hard to imagine my kid grown up to a teenager and convincing her to carry not one, but two, around with her at all times. It seems like a hard sell. Maybe they’ll be some sort of phone autoinjector accessory and we can combine life saving device to social media and it will never be left at home.

Another problem? The epinephrine expires every year. I just had to refill the prescription and I thought it would be easier the second time around. But it’s not. Last year when we first filled, the pharmacy would only give us one pack of two because that’s the special they were running. You only have to pay $25 but you only get one pack. Then, if we needed more, we had to have another prescription from the doctor, then go through prior authorization from our insurance company, then depending on the copay they would use some sort of manufactures coupon to get the cost down?  You know what sounds really good together? Coupons and PRESCRIPTION MEDICATION. This year when the prescription went through, I had to talk to the pharmacy sales reps no less than four times. And we’ve still only received the first pack. The second pack was supposed to be delivered a few weeks ago. Where is it? The people I’ve called definitely don’t know, that’s for sure.

One reason it’s so complicated to get the epinephrine? Because it’s so expensive. There are a lot of resources online offering advice on how to get the cost of epinephrine down:

• Food Allergy Research & Education
• Kids with Food Allergies
• Allergy and Asthma Network

But wading through them is like being thrown into some sort of advanced placement extreme couponing class with never having asked for a rebate before. You can use this company if you have this commercial insurance for a coupon card that can decrease your out of pocket expenses OR you can use this other company and use their discount program OR if you don’t have insurance and make less than a certain amount per year you can get a pack for free OR you can use this company and get up to $35 off…. It’s really confusing and I say that as somebody who works in healthcare.

It's the kind of frustration nobody would go through unless it’s the only thing the entire world that could save your kid. Luckily for these pharmaceutical companies, that’s exactly what they are dealing with.