On health care and the disgust behind the price to save my daughter’s life
When I wrote the title to this post, I realized how easily I along with others could remove allergic and replace it with something else; a woman, black, muslim, a handicapped veteran, disabled, and the list goes on. Many of these things I cannot speak of, only advocate for. However, I’ve experienced being a woman in America my whole life, which comes with its own issues. But for the first time in my life as an American, I experienced what it’s like to truly need the Health Care system. And watch as it failed.
Not long ago, we suddenly discovered our 10-month old daughter Emma is severely allergic to eggs, during what was meant to be an exciting new culinary experience. With one tough grip of the eggs and one small bite, one of our biggest fears spread across our face as quickly as the allergy spread throughout her body and system(s). A day spent in the hospital led to the recommendation of seeing an allergist (obviously) and we instantly became an egg-free home given we had no idea what we were working with. Allergies supposedly get worse the next time they occur, and we wanted to eliminate all possibilities of exposure until we saw a doctor and had the right preventative medicine at any moment.
Last week, we saw the doctor and he explained to us what we were working with and that Emma’s reaction to eggs is topical (when touched) but seemingly systemic (when consumed). A systemic reaction is when an inflammation spreads from a localized area of one organ (like the skin) to other organ systems in the body. The inflammation can be from toxins, allergies or infections. The question still remained, what part of the egg was Emma reacting to and under what conditions? Cooked in a pan, baked in a cake, broken down in pasta, etc. are all different states that we really have to boil it down to and that would be done with bloodwork.
Because of this, he prescribed her an EpiPen, which would save her life in the event of an allergy attack. We had been hearing bits of news here and there about Mylan, the makers of the EpiPen, and how they were essentially running a monopoly which allowed them to increase the pricing of the drug very high in a short amount of time. However, we didn’t know amounts because from what we knew, it’s all contingent on your insurance. After the visit, I dropped off the prescription at Rite Aid and went home to wait for it to be filled. Soon after, I received a phone call from the pharmacist who informed me that it will cost $600.
Health Care in America has been a hot topic for as far as I can remember. But after living in Europe, specifically Germany for 3 years, I became spoiled by the gift of perfect health insurance. While the bed-side manner of doctors there cannot compete with American doctors (that I’ve had experience with), there were no issues about affordable and accepted care. Whether you are a millionaire, lower class citizen, or homeless, you are covered. And I (naively) thought I’d return to that care when we moved back to the states last month.
Upon finding out the astronomical price for something so vital, my blood boiled and my stomach knotted. I mean, we have insurance. Arguably one of the best and one of the highest tiers within that insurance. Although it’s expensive for us, we can afford it. What made my skin crawl, was knowing many, many, others cannot.
The price is unrealistic for people who are barely, if at all, living paycheck-to-paycheck. One prescription gives you a pack of (2) epi-pens. You receive two because often after administering the first injection of epinephrine, the individual has a second wave reaction and it’s important to have that second pen while you wait for an EMT to arrive (call 911 after the first injection!). What happens when you can’t afford this as it is, but need more than 1 pack in a given year?
Well, you’re in even deeper.
With the expensive prescription comes a change in lifestyle for Emma. We’ve redefined what she eats and have modified our diets to the foods we expose around her. But even that is a privilege. Eating healthy and watching what you eat and buying all of the best is a privilege for the middle to upper class. Yet again, my blood boils.
It is a damn shame that this is legal. And the government turns a blind eye to it. They’re too worried about overturning equal rights for LGBTQ individuals and minorities (injustice that it was prevented in the first place), protecting any type of gun reform or covering their asses from the many other shitstorms that occur in Washington. But it is an injustice to citizens that Big Pharma companies and lobbyists are in each other’s pockets at the expense of us. Not to mention Mylan’s lobbying history blatantly showcases that the company has track record at influencing government policies.
Sidenote: It’s a pretty intense coincidence that the CEO of Mylan is the daughter of Senator Joe Manchin of West Virginia.
It costs $600 ($318 with a coupon — so generous of you Mylan) to ensure my kid doesn’t die of an allergic reaction. And why do they do it, you may ask? Simply because they can. Because every parent will do every thing they can and pay every penny to save their child’s life. Ultimately, the government can make a change to this if they truly wanted and that’s what really gets me. Adding the EpiPen, a life-saving allergy treatment, to a federal list of preventive medical services, eliminates out-of-pocket costs for millions of families. Millions, not thousands, in case you misread.
At the end of my anger of originally writing this and throughout the cool down of having it proofread, an interesting question was posed to me by one of the people editing this: What can we do to take action? We all actually work in the tech industry and for me, as a designer, it’s my job to solve problems that need fixing. I, like many others though, trusted in those who had the capability to fix it. And they’ve taken advantage of that. So I’ve come back to the conclusion that I continually find myself saying: that it is those in this industry with the capability to change it, along with the help of parents everywhere who are fighting to have their voices heard.
With that said, I’m going to spend some time figuring out the best ways to advocate aside from my voice on social media and word of mouth. Petitions are a great way to uplift the voices of those affected, and this is a great one to follow, sign and contribute to.
If you’re someone in tech, I’d love to hear your thoughts and ideas.
If you’re the parent of or someone with an allergy, I’d love to know your story with allergies and the epipen. The more you speak up and share, the harder it is for companies like Mylan to silence.
Update: As I finished writing this, my husband saw that there was a congressional hearing where Congress seems to be coming down pretty hard on the company for the sudden spike in price. Finally! You can read about it here: https://news.vice.com/article/congress-epipen-ceo-got-filthy-rich-at-the-expense-of-the-american-people