When your child is born with a life-threatening allergy, you spend every moment of every day on edge. You worry your child will be exposed to the thing that could kill him. And you pray that when it happens, there will be an EpiPen close by.
Many of us have seen the device, an auto-injector of epinephrine, literally save our children's lives. That's why we kept buying EpiPens even as Mylan, the drug's manufacturer, raised the price by 500 percent. Maybe Auvi-Q, a lower-cost device expected to reenter the market next year, will finally change that calculation.
But the hype over Auvi-Q shows how much our healthcare system has let patients down: As more and more costs shift to consumers, we've been held captive to the arbitrary pricing of a drug we cannot do without.
My son Nolan was six months old when we discovered he had a life-threatening allergy to eggs. On a busy morning as I was rushing to leave for work, I gave Nolan a small bite of scrambled egg. Our doctor had recommended that we try out new foods. Moments later, he was fussing and crying much more then usual. I noticed a huge welt on his neck.
Soon, more welts appeared, rapidly spreading over his body. He looked like a burn victim. I had no idea what was happening. I called the doctor. She asked if he was breathing. He was. Then she told me to bring him in— immediately. By this time, Nolan was screaming. He had become pale and started vomiting. As I made my way to the hospital, he passed out in my arms.
The hospital, luckily, is at end of our street. I ran into the emergency room screaming, “Save my son!" They gave Nolan an EpiPen Jr. dose, and 10 minutes later, a second one. After 20 minutes, the color returned to Nolan's face. He could breathe. He was given a course of oral steroids and sent to the local children's hospital for monitoring.
We were in shock. There was no history of allergies in our family. We were totally unprepared for what happened. That day set our family on a new course of allergy specialists, diet modifications, and yearly purchases of EpiPens.
Nolan is now five. In the years since we discovered his allergy, he has gone into anaphylactic shock four times. Each time, it was because of some unknown cross-contamination. Each time, we had only 30 minutes from the time he was exposed to the time he stopped breathing. In each instance, the EpiPen saved his life.
Parents who have a child with a severe allergy don't just need to carry one EpiPen. They need several. EpiPens are sold in packs of two. Doctors recommend keeping the two together, not splitting them. But they are priced outrageously high — more than $600 now, for a pack that might cost $50 to produce. I've heard many families say they split packs: one EpiPen for school, one for home. That puts children at risk. It should never be a choice families have to make.
Nolan's allergy is so severe that one dose of epinephrine is not always enough. In fact, we need four, two-packs of EpiPens:
- One set I carry in my purse at ALL times.
- One set for school.
- One set for his after-school care.
- One set that we keep in the house for our babysitters or for my husband when I'm not home. I also give a set to Nolan when he is going on a play date.
Even though we need four sets, our insurance only covers one. We have to pay for the other three out-of-pocket. That's $1,800. And it's an annual expense: EpiPens are only good for 12 months. But what if you don't have insurance? Or the available cash? What if your deductible has risen dramatically in recent years?
Mylan has said it will make a generic EpiPen available in the next 18 months, but it will likely cost $300 per pack — a 50 percent reduction, but still prohibitively expensive for many families. Mylan will still be making a huge profit at the expense of our kids' health.
Is there a cheaper alternative? Until Auvi-Q re-enters the market, there is one other product available, but many insurance companies don't cover it, and many doctors don't know about it.
And to take the lowest-cost path — simply injecting the medication yourself — you would need a nurse to teach parents, babysitters, friends, and teachers how to fill a needle with epinephrine, apply a syringe, and administer the drug. That's not the easiest nor safest option when you are under the highly stressful circumstance of an anaphylactic shock.
The high price of EpiPens has put a tremendous financial and emotional burden on American families — and the healthcare system has only increased that stress. Everyone wants to raise healthy children and keep them safe. EpiPens help do that. But only if you can afford them.
Laura Pacheco is a filmmaker in Vermont. Illustration by Tiffany Chan. Photo courtesy of the Pacheco family.