Food Allergies and Epi-Pens: My Sons Story

You can’t help but see the news lately about the epi-pen price hikes. As the mom of a former food-allergic son, I get angry every time I see them. The epi-pen now costs $650 per fill – and you need to refill it every single year because they expire, even if you don’t use it. Each pack comes with two epi-pens and you may need more, depending on your kid’s schedule. When my son was little we needed at least four – one for the house, one to travel with us wherever we went, and one each for his two preschools. That’s $1200 per year, which is no small cost.

This is my son, covered in eczema, from just before we learned what was causing all his skin problems. It was a severe dairy allergy coupled with egg and nut allergies, and a sensitivity to all soaps/detergents.

Food allergies turned our lives upside-down. No one in my family had them, and we had to learn how to manage them and how to cook without dairy. At the time there was little understanding about food allergies – many people thought they were “no big deal” or brushed them off. Fortunately, he outgrew his allergies years ago, right around the time that Mylan bought the rights to produce the Epi-Pen. They cost $57 back then – still expensive for my family at the time, but manageable. Two dosages would have been just over $100 back then. That’s why I’m so outraged by the news about the price hikes.

Parents of children with allergies are faced with a terrible choice. They can either pay $1200 every single year to keep their children safe, or they can take the risk of going with Benadryl and hope that an ER visit (which costs much more) will save their children’s lives. More and more people are on high deductible plans and have to pay the entire cost themselves. Even for those that aren’t on a high-deductible plan, the price hikes impact them (and in fact everyone) by being one of the causes of insurance prices going up.

That’s the terrible thing – parents and those adults with allergies have no real choice. Hiking costs of this drug way above the cost to produce it, and knowing people will pay for it because otherwise their children might die, is unconscionable. Setting a price should be based on supply and demand, and making a reasonable profit for your shareholders. But hiking prices solely because of lack of competition is a recipe for getting yourself in huge trouble, as the company has found out.

The market will bear the costs-until it won’t. I’m surprised Mylan hasn’t been paying attention to the news about other drug makers encountering huge issues from hiking prices on drugs for no other reason than “we can”. As a corporation you need to be careful, not only of appearances (greedy pharmaceutical company anyone?) but also of triggering regulatory action against your company.

People are outraged. The media latched onto the story and reported on not only the price hikes but also on how tone-deaf the CEO was. Here’s a PR tip – you’re not “more frustrated about the price hikes than anyone” when you’re the CEO profiting from hiking prices. You’re certainly not more frustrated than a parent in their early 20’s trying to afford paying for enough Epi-pens to keep your child from dying from an allergic reaction.

Fortunately, death from an allergic reaction is not common. Somewhere between 63 and 99 deaths per year in the US are due to an allergic reaction. Also nearly 60% of those deaths were caused by allergic reactions to medications, so the number that would die from allergies that an epi pen is designed to prevent is even smaller-about 20 per year. The death of those 20 was in most cases caused by a delay in – you guessed it – administration of the medication in the epi-pen. And if you’re the parent of one of those children, the “uncommonness” of the worst possible outcome doesn’t matter. Your precious child is still gone, and they’ll never come back. That’s why people will pay whatever they need to in order to keep their child safe.

We never needed to use the epi-pen, but we needed to have it just in case. We managed my sons allergies very carefully for many years, and I became an expert in cooking without dairy, eggs, or nuts (I can make a mean dairy-free birthday cake and batches of chocolate chunk cookies!). Every time I look at my oldest son I am grateful that he not only outgrew his allergies but also that his reactions were mild enough where Benadryl took care of them. But I would never have gone without the epi-pen, and the parents of the 1 out of every 13 children with food allergies feel the same.

Dairy, egg, and nut free homemade birthday cake for his second birthday

What’s your take on the Epi-Pen price hikes? Have you had to manage a child with food allergies and made sacrifices to get the life-saving medication you need? Let me know in the comments.

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