An EpiPen saved my life last week, Spokane resident writes

Editor’s Note: This opinion piece first appeared on the website Medium; Spokane resident Zach Shallbetter is co-founder of @Uxiliary, Executive Director of the Inland Northwest Technologists and founder of frontenddevelopers.org.

I wish I had a photo of Saturday, Aug. 20, to share with the world. A snapshot of what it’s like for a person who rides an extreme line when it comes to health. A view of my nightstand scattered with medications, tissues, and a blood-filled EpiPen. One upset preteen calling 911 and the other dragging my body down stairs. The chaos left behind after struggling for my life.

I’m habitually victimized by my own immune system. Dust, smoke, pets, grass, trees and a page full of food allergies. Generally it’s just mild irritation or wheezing, but sometimes it breaks into anaphylaxis and respiratory distress. A tightness that can only be compared to drowning while having a heart attack.

This is purgatory, and countless individuals, diagnosed or not, suffer day to day with it. We have few instant resources to save ourselves, but they do exist. Tried-and-true safeguards invented in the ’70s that behave like adrenaline to push our bodies into overdrive. They give us enough time to seek help. The king of these at the moment is the EpiPen.

EpiPens expire. And once a year you need to re-up. When it’s time, I’ll normally buy four for under $100 (after coupons and rebates). One for the home, office, car and my wife’s purse. You forget about them because they’re designed to be safeguards  –  a small peace-of-mind for everyone around me. Now, since tagging myself on Saturday, I’m going to need to refill that prescription.

The price has changed, though, and CEO Heather Bresch of Mylan, the maker of the EpiPen, is telling us that the current $608 cost isn’t their fault. Claiming that the real culprit is the number of hands the product moves through and overbearing official bodies meddling in the process. Boasting instead of her company’s heroic work to pass legislation that puts their product in homes and schools around the world  –  saving millions.

I’d love to provide an expert opinion on the industry and governance wrapping this, but I can’t, and it doesn’t matter. What I can say is that even if there is hyper-overreach surrounding this product, massive cost overruns and shortages, it doesn’t validate a price increase over a decade from $60 to $600, especially given this product was developed with taxpayer money and has remained unchanged.

If Mylan is the altruistic company they say they are, striving heroically to save the planet, they simply cannot justify a 10-times price increase on a rescue device. Especially when nothing has changed and they’ve been the only game in town since the end of the Vietnam War. This is not how a protagonist behaves. If you’re a selfless hero, taking massive bonuses and increasing profits isn’t an intentional motion. It’s the reward you earn from a society that appreciates the work you’re doing.

The adult EpiPen has 0.3 milligrams of epinephrine. The cost of 1.0 mg of epinephrine is around $2 retail. Even with medications, health insurance and systems in place, I almost died. I was lucky because I had that support, but there are many people who are in worse positions. Parents required to buy duplicates for school, minimum-wage workers and those without insurance. They’re simply not going to miss paying rent because they need “insurance” medicine  –  despite how illogical that might sound.

In 2012, studies indicate, about 1 in 4 American adults, perhaps 50 million people, failed to fill a prescription they needed because of the cost. What happens next is that people like myself will die, product names will be changed, CEOs like Martin Shkreli will be fired, and feel-good laws will be forced through containing loopholes and earmarks. It’s not change, it’s meaningless social compliance.

It’s now time to acknowledge the behavioral trend of influential medical manufacturers. This issue isn’t about the Affordable Care Act, the government or pharmacies. It’s about corporate greed and the abuse of power that allows them to take every ounce of advantage. Removing that power and binding them to ethical codes is a top priority and would have a sweeping impact on medical costs across the board.

If you want to truly make a difference, start by telling your story to everyone. Don’t be scared; many of us are sick and want to relate.

Take a few minutes to call your representatives. Ask them to work on these few items, any of which can have a huge impact:

• Set a limit on out-of-pocket prescription costs.
• Push for a fast-track approach for approval of critical generic versions of common drugs through the FDA.
• Set limits on the life cycle and allowed changes to pharmaceutical and medical device patents.
• Allow limited importation of drugs from countries that have a regulatory system similar to that of the U.S to encourage competition.