Because awareness matters…

I was inspired to write this after reading Meri’s post yesterday, which she followed up with this wonderful post today with more perspectives from the DOC, and real ways you can help.

There are certain things I don’t like to discuss on the internet—namely, anything involving my love life or my political leanings. It’s not because I believe we shouldn’t discuss these things (actually, wait, my love life will never be up for discussion, ya weirdos). Where politics are concerned, however, I prefer to stay out of it. The people of the internet carry pitchforks and these topics are so hugely complex that I don’t think status updates do them justice. Even worse, comment sections tend to skew towards arguments between Your Drunk Uncle and Your Communist Cousin: two people who might kill each other at Thanksgiving, but most certainly will if given the opportunity to do so from behind the comfort of a screen. You guys know The Internet—you’re on it, after all. It can quickly turn into a whole lot of people talking AT each other, rather than a place to gain perspective, understand, and respect one another (I truly believe that the internet can be that when it has its best face on, which is why I’m on it—and also for this).

Now, the United States healthcare system is a beast. I won’t pretend to fully understand the how or why of it. It’s a whole lot of economics and politics that are 240 short years in the making and fiercely defended by many–and no, it’s not all bad. But when it is, it tends to be awful. A few weeks back, during the EpiPen controversy, I saw a status that went something like this:

“I love when people freak out and talk about a complex industry that they don’t understand at all!”

Translation: You’re all stupid and you know nothing, so shut up.

If you haven’t guessed by now, I’m not interested in snarky Facebook statuses. And I’m even less interested in internet fights (or real-life fights for that matter, ya girl is very conflict-averse). My main interest in writing this blog is in exploring the emotional aspect of living with chronic illness. That being said, the pharmaceutical and healthcare industries interest, confound and ultimately control many who live with less-than-perfect health. And let’s be real: there are few things more emotional than wondering how you’ll afford your life-saving medication or wanting help but not being able to pay for it. I say that as someone who grew up with access to good healthcare and as someone who currently lives in a country with socialized health. I don’t know those struggles first-hand and I hope I never do, but I am painfully aware of what they mean for many who are less fortunate. Even in my fortune, I’m aware that the decisions of organizations much bigger than I am could turn my entire life upside down in an instant. So when people “freaked out” about a complex industry they “didn’t understand,” when they went meme crazy over a CEO’s 18 million dollar pay hike, some people objected to that outrage, claiming that fingers were being pointed in the wrong directions. I’ll respect that. But I’d like to think that the core issue was this one: people have recognized that this has gone too far, that the word injustice does not even begin cover it, that there is no “defense” for price increases that bar many from accessing their very non-optional medical treatments.

When I wrote about dealing with insensitive comments, I argued that “many people don’t know because they don’t have to know.” I wonder if that’s true of those who would argue against healthcare and pharma reform as well. Must we really ask that people suffer in order to understand that access to healthcare is much more complicated than “working hard and getting what you deserve,” that it is something much closer to being born in the right place and hoping nothing goes wrong? I really hope not. I really hope that those in power will listen whether or not they know what it’s like to scrape by and forego medication in favor of food. This is one of those issues I don’t like to talk about on the internet (because of the pitchfork people), but I really, deep down in my soul, struggle to understand how there can be “two sides” to a story in which someone dies or suffers or settles for sub-par care because they have to choose between rent and health.

And that’s why I won’t shut up.


Being a Diabetes Medical Supply Hoarder — Mindy’s post on Beyond Type 1

The Cost of Staying Alive— Charity’s post on Beyond Type 1

Non-diabetes related articles re: healthcare in America:

Poor and Uninsured in Texas Ricardo Nuila’s Article in The New Yorker

Without a transplant, Geronimo Oregón would die of liver failure. Could he navigate one of the most restrictive health-care systems in the country?

Overkill Atul Gawande’s article in The New Yorker

An avalanche of unnecessary medical care is harming patients physically and financially. What can we do about it?

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