An Open Letter to EpiPen CEO Heather Bresch from the Mom of a Son with Life-Threatening Allergies

Many families, like my own, need four sets of EpiPens. That’s about $1,200 even with the "Savings Card."
Publish date:
August 25, 2016
parenting, allergies, medical issues

Dear Heather Bresch,

I don’t make $18 million a year. You do. I do not have a yacht, a vacation home, or a large savings account. To be honest, I don’t even make a half of 1 percent of what you make. I don’t own a boat, I haven’t been on vacation in almost a decade, and I rent a two-bedroom, 800-square-foot apartment. There’s almost always zero in my savings account. But my family needs you. Or rather, my family needs the product your company manufactures.

My 7-year-old son, Andrew, is super silly. He’s an amazing soccer player and is headed into second grade. But here's the thing: He has multiple life-threatening allergies. If he were to go into anaphylaxis, he would need your product to save his life. Without your product, he would die. Die.

But the cost of your product is a disgrace. It’s outlandish.

Sure, most insurance companies cover the device, but some of those will only cover it after a deductible is met. And, yes, you even offer a $0 co-pay card (you call it a "Savings Card"), which is awesome, except that if you're uninsured or have ANY government insurance, it isn’t compatible. And, wait, the $0 co-pay of the card is really only $0 if your deductible is $300 or less (the card only covered $100 until you boosted it to $300 less than 24 hours ago — the cost is still totally outrageous). The co-pay card covers up to $300 per two-pack, so if your co-pay is $300 or less, your EpiPens are free. But if you pay out of pocket or if your deductible is greater than $300, your co-pay will be greater than $0. I may not be a math major, but that’s not a $0 co-pay, is it?

How many people have recently checked the price of a pack of EpiPens? Before the controversy broke out, had you, Ms. Bresch? I have. One would think it couldn’t possibly be much more than $300, but it is. It’s much more. The current cost, which differs across the country and from pharmacy to pharmacy, averages $600.

Six hundred dollars.

So, with the coupon, it would be $300 before deductible.

Once again, $300. A drop in the bucket if you're making $18 million, but a sizable chunk of the budget when you're making a fraction of that.

Just last year, the allergy community had options for their epinephrine device injectors: both EpiPen and Auvi-Q. About one year ago, Auvi-Q (the smaller, more user-friendly device) was recalled due to a mechanism malfunction. Before Auvi-Q was recalled, EpiPen prices were about $150. In one year, EpiPen prices went up around $450. Yep, you read that right.

What exactly does this mean for me as a parent? It is terrifying that I don't know what the future holds as far as pricing. This product will save my son's life, so I can’t just not buy it. The rising cost is becoming more and more well known — when will it end?

How far will the cost rise?

No one has any idea.

Sadly, with EpiPen's main competitor off of the market due to recall, their only other competitor on what seems like permanent backorder, and no generic in sight, it would seem that the price would continuously rise. And rise. And rise. But is that fair? Is that right?

And you can’t just buy one. Every family needs at least two 2-packs of EpiPens. Even with the coupon, that's $600. Many families, like my own, need four 2-packs of EpiPens (one to self-carry, one for the school nurse, one for my purse, and one for the first aid kit). So that’s $1,200 before deductible.

Twelve hundred dollars.

Twelve hundred dollars for something that is unbelievably temperature-sensitive and something I may never even (and hopefully won’t) need — BUT I would never want to be without one. This is one life-saving medication you can’t skip.

As a parent, I give up a lot — most parents do, but especially parents of children with life-threatening allergies. I give up the “finer” things, including things like vacations, new cars, owning a home, or even having a security blanket of a savings account.

So, what can an insured parent like me do if they can’t afford to drop $1,200 on four sets of EpiPens? You can call the manufacturer, although I’ve never met someone who they have helped. (Have you, Heather Bresch?)

The next choices are either carrying an expired EpiPen and hoping and praying it still functions well and the medication hasn’t lost its effectiveness (after all, EpiPens do have a very short life span).

If you do not have an expired EpiPen, or you don’t want to carry an expired EpiPen, or your child is in school (schools cannot legally take and use expired EpiPens), you either have to find the money somewhere, or you have to go without this life-saving medication and hope you do not need it. Really, one does not have good options. Something needs to change, but how? When? Where? Who?

To be honest, as a parent, I have no idea when or if relief will ever come from this price gouging. Will the release of a generic even bring relief? The generic version is slated to be released within the next two years. What is your company going to do, Ms. Bresch? Will the price continue to rise? Will the insurance companies even cover the generic? Many currently do not cover the competitor of EpiPen.

I’m going to go out on a limb and say insurance companies will not cover the generic, which in turn may make the price of EpiPen to rise more. I’m sure this thought doesn’t scare you, Ms. Bresch, but it terrifies me. I sure do know there isn’t much more I can give up in order to afford EpiPens.

How much should my family give up?

While you’re raking in the money, are the scientists who do the actual work receiving raises? Can they even afford their own medication? Something has to change, Ms. Bresch, and change starts here.