I'm 16 and have 31 life-threatening allergies—EpiPens need a price cap (2024)

I'm a 16-year-old high school student and I have 31 anaphylactic allergies.

I am allergic to all nuts, shellfish, fish, tree nuts, local anesthetics, several other medications, and stinging insects. To survive with my condition, I need to carry an epinephrine auto-injector everywhere I go.

Even if I'm not going to eat, I must still carry the auto-injector because I could get stung by an insect, or be exposed to an allergen through cross-contamination, which is a significant risk to all who have life-threatening allergies.

I have had ER visits due to anaphylaxis from cross-contamination many times.

Several examples are from when I sat at a restaurant booth that had not been fully cleaned or took a drink from someone's water bottle and they had consumed an allergen earlier in the day.

I must take great care in sanitizing places I sit and eat, and I need to be able to read and understand food labels to stay safe.

It's quite scary to go to the ER. However, it's not the worst part—the time it takes from the onset of the reaction until I make it to the ER is scariest.

I learned long ago there is not enough time to wait for an ambulance. Once I even had to take a taxi to the ER.

There is always the thought in the back of my mind: What if I don't make it? It is very distressing as I struggle to breathe, my tongue and eyes swell and my body feels like it is covered in fire ants.

Allergic reactions come in many forms and are unpredictable in their severity and timing. In more mild cases, I could just break out in hives.

Signs of a potentially lethal allergic reaction called anaphylaxis are swelling, which can impact the airway, leading to shortness of breath; low blood pressure; unconsciousness; and shock.

Ultimately, it could lead to my death, and there is no alternative treatment for anaphylaxis to the life-saving epinephrine.

I'm unable to eat a lot of foods and generally abstain from those I don't know the exact ingredients of, which leads to me not going to many parties or social events.

Missing out on social events is not fun. However, it's not the worst thing in the world. In fact, I'd argue it's helpful to some extent. It gives me extra time to work on studying and schoolwork. It also keeps me out of situations where drugs and alcohol could be present.

I'm very lucky to have strong friendships with understanding people, who are willing to forgo certain foods and take extra care when I'm present. My best friend Knyle even asked me to teach him how to use an EpiPen just in case something happened to me.

There is a general lack of education about food allergies, so often people see them as a thing to be mocked. We see in the media food allergies depicted as a punchline.

In this past Super Bowl season, a national takeout delivery company created an advertisem*nt making light of food allergies, in this case peanut butter. But due to the overwhelmingly negative response from the food allergy community, the company changed its ad.

It's never pleasing to see someone mock a condition that has nearly cost me my life, more times than I can remember. I've learned not to get upset about it anymore. Most people who mock are just ignorant of what people with allergies experience and simply go off what they see in the media.

In my opinion, we can fix this problem of mocking and ignorance not by getting upset, but by increasing education about food allergies in schools, medical institutions, and individually educating those willing to learn.

Through education we can remove stigma and we can afford people who have food allergies a life more free from prejudice and fear.

Our society groups food allergies and food intolerance in the same category. But the effects are very different. Where a person who is lactose intolerant might get an upset stomach from consuming milk products, a person with an anaphylactic reaction may die.

In my schooling, I have been restricted from taking part in school events, such as parties and field trips.

Discrimination against allergic individuals is common. It even impacts my ability to access medical care. I live in a very rural setting. The only allergist for many hours around has a rudimentary skill level and cannot care for someone as complex as me.

It means I'm unable to obtain local care. This lack of access forces me to travel four hours away to get routine allergy care.

I would like to see a cap on the cost of epinephrine auto-injectors. I am by no means anti-business, nor do I believe in putting undue hardship on businesses.

However, I do believe that when large companies use their size and market dominance to crush competition and inflate the cost of life-saving medication to line their pockets, something must be done. And this is the case with epinephrine auto-injectors.

Most epinephrine auto-injectors are produced by one company that has a US market share in excess of 70 percent. The auto-injector costs little over $8 to manufacture, but is often sold in packs of two for more than $800—50 times the cost.

This situation is reminiscent of the insulin price crisis, which was greatly helped by legislation capping the cost of insulin. So I ask you this: If it's good enough for insulin, why not epinephrine?

I am strongly in favor of capping the cost of a pack of epinephrine auto-injectors at $100 per year. This still offers a substantial profit margin, so companies can make plenty of money while allowing lower-income communities to afford life-saving medication without breaking the bank.

A breakthrough technology in the world of epinephrine is Neffy, which is a nasally administered epinephrine product. While all epinephrine auto-injectors on the market currently use a needle to administer the medication, Neffy is simply sprayed into the nose.

This would be especially useful for younger allergic persons because it alleviates the fear of needing to be injected, which will reduce the reluctance to use it. Sadly, this medication is only approved in Europe at this time. It is still pending FDA approval.

I wish that I was able to directly influence the legislation. It has been a pleasure to be able to work with lawmakers as I advocate on these issues.

However, it is my firm belief that most times solutions are best found by those with direct experience of the issue. This has inspired me to desire a career in politics one day.

My fear is that if we do not act swiftly to usher in change then we will fall behind the rest of the world in allergy treatment and equality of access.

Currently in the United States, 33 million Americans have a food allergy, according to Food Allergy Research & Education (FARE). This is a massive portion of our populace that is often unrepresented.

Food allergies are the most underfunded chronic health condition in the United States currently. If we continue to have a lack of progress and regulations then we will be putting more people's lives at risk.

It is through this social progress that we can ensure that equality and equity are not just talking points, but core tenants of the American experience for all, regardless of health status.

Devin August Sailer, 16, is a teenager with 31 anaphylactic allergies who is advocating for change.

All views expressed are the author's own.

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