When I found out my daughter was allergic to peanuts, she was a year old. She couldn’t have cared less. She was smiling and happy, sitting on my lap in the allergist’s office, blissfully unaware of the big red mark on the side of her face. And I was crying and sad, crushed for that moment that the first challenge had been put in her path. I wasn’t sad that she was different, that her cheeks would never be covered in sticky PB and J or that Reese’s cups would now be off limits on Halloween. I was sad because I am not only her mom, but I am also an emergency medicine physician. I have seen children and adults arrive moments from death, their swollen tongues pushed out of ballooned lips while gasping for air. In anaphylaxis, whether true shock or a severe allergic reaction, I have saved lives with the quick administration of epinephrine, reversing the course of an otherwise devastating disease.
Needless to say, after our appointment, I filled her prescription for EpiPen right away. I had one 2-pack at home, one in her diaper bag, and yet another at daycare. I threw out anything nut related. I notified all family and friends. I read labels, not once, but twice doing everything I could think of to keep her safe. She couldn’t even walk yet. Still, there were times I couldn’t sleep thinking what if heaven forbid one day my baby couldn’t breathe.
It’s hard to ignore the press that has surrounded EpiPen. But just in case you missed it, the drug’s cost skyrocketed to nearly $600 for a single auto-injector two pack representing a 400 percent price hike over the last 10 years. Over the past week there have been public and political requests of Mylan, the manufacturer of EpiPen, to provide some sort of justification or reduce the price. The CEO responded by blaming the system. Most recently the company proposed a step-wise program to bring down costs a bit. And now Sarah Jessica Parker has stepped down as their spokesperson.
But where does that leave families like mine? Where do we go from here? First of all, there is nothing fantastical about epinephrine itself. It’s a simple drug with a simple mechanism of action. The EpiPen has been on the market for years. There is a patent on the expensive auto-injector, but the rapid increase in cost has been entirely unjustified. Some could say it’s simple capitalism, and I would not disagree. In an easy supply and demand scenario, Mylan is being opportunistic.
Food allergies are on the rise and doctors are prescribing more EpiPens. Schools and camps are requiring individual students to provide their own pens (cue back-to-school season). A short shelf life forces you to throw out unused product annually. Mylan has nearly a monopoly going as EpiPen’s only competitor, Auvi-Q, was recalled in 2015. Even some hospitals prefer EpiPen for safety and ease of use as opposed to drawing up epinephrine into individual syringes reducing chances of medication error.
At the residency program I trained at, our unofficial motto was “do the right thing.” As an attending, I tell myself this every shift. My patients come to the ER because they either are having an emergency or they think they are. Regardless, my job is to do all that I can to help them.
I can accept sleepless nights because I’m a parent and worry about my own kids, but do I also have to worry about my patients’ inability to afford the EpiPen I prescribed? No person should die because they can’t afford a life-saving medication. No parent should have to feel the burden of not being able to afford a medication that will save his or her child’s life.
So what can we do now? Yes, progress has been made in the past few days, but we must not stop. As parents, community members and doctors we need to continue to call this crooked company out.
- Keep calling and writing your local lawmakers and let them know you’re mad as hell.
- Find out what hearings they are already calling into action.
- Sign all circulating petitions.
- Bring unapologetic awareness to those who feel immune from this problem.
- Attend local school board meetings or meet with other parents and find out what your community’s schools are doing.
- Dig deeper into President Obama’s School Access to Emergency Epinephrine Act signed in 2013 to see if it even is applied at your school.
You may be surprised to know that only a handful of states in our nation require schools to have an emergency stockpile of EpiPens. Students otherwise have a 2-pack on their person and extra stored at the school, most of which are tossed unused in a year. Seeing that equates to every child purchasing two 2-packs at least, that adds up big and quickly for Mylan as families are putting out this cost annually regardless of whether they used the medication or not.
Ask why camps aren’t given funding to have a stockpile of epi-pens. Most YMCA’s have life-saving AEDs. Does this make any sense? As physicians, we need to consider not prescribing EpiPens at all, instead write for epinephrine auto-injectors. Hit Mylan in the proverbial pocketbook. Educate your patients about Adrenaclick, a generic and less sexy epinephrine auto-injector that’s also a quarter of the price. Never heard of it? Neither had I until last week. Interesting, isn’t it? Inquire into and even join your hospital’s pharmacy and therapeutics committee and find out just how much they’re being gouged. Help formulate a plan to make a safer or less expensive alternative available to hospitals. The list could probably go on, and that is where we need your immediate response.
Shame on Mylan and its CEO Heather Bresch, a mom herself. But for maybe a move this egregious, this obviously capitalistic, will wake us all up to what is really at risk. This is not about profits; it’s about people. It’s about my people: my children and my patients. And I won’t stop until they are more important than a CEO’s salary and shareholders’ stock.
Kristen Maguire is an emergency physician who blogs at FemInEm.
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