Dear Representative Brooks,

Speaking on the American Health Care Act/Trumpcare you said, “It will allow insurance companies to require people who have higher health care costs to contribute more to the insurance pool that helps offset all these costs, thereby reducing the cost to those people who lead good lives, they’re healthy, they’ve done the things to keep their bodies healthy. And right now, those are the people who have done things the right way that are seeing their costs skyrocket." 

When I first read this comment I thought it was something from the popular satirical news source The Onion because it just couldn't be real. But no, this was just another in a series of ignorant remarks on healthcare made by a white, healthy, able-bodied man in Congress. 

I try to be respectful of everyone's opinions, but your comments made me so nauseated it's absolutely impossible to.

My world changed dramatically about eight years ago when I had a back injury that served as a trigger event for underlying, preexisting genetic diseases my family and I were unaware about. Before that incident I was "normal" - whatever that means - I did "things to keep [my] body healthy." But that didn't prevent genetics from taking over. 

My illness has caused me face death many times. I have been told I would never walk again, never read again let alone write, never be able to go to college, never be able to live independently, and more. But here I am, alive and having recently celebrated my eighteenth birthday, a huge milestone that once seemed unreachable. I have had to relearn how to walk six times, but today am walking without assistance. Through intensive speech therapy I am reading and writing again. Next fall I will be going across the country to George Washington University for college with a merit scholarship. 


All of these huge accomplishments only happened because I fought my ass off, raised hell, and wouldn't take no for an answer. So tell me again how I'm not doing things right and I'm not trying hard enough to be healthy? 

Even today my life is still in a fragile position of pseudo-stability. But, like many patients, I refuse to be complacent in my future.  

When disease comes into your life, especially rare and undiagnosed disease like I am dealing with, there is no rule book. You quickly learn there is no such thing as "right" or "wrong", there's only survival and you do whatever you have to do to achieve that. 

Have you ever even set foot on the National Institute of Health's (NIH) campus? Have you been to The Children's INN? Have you seen the looks of despair on families' faces and the equally as powerful looks of hope because they know this is the only option left to save themselves or their children? Have you ever looked into a patient's eyes and seen the intense determination to never give up? Have you ever had a loved one so sick they feared for their life? Have you ever been so sick that you feared for your life? No, because if you had experienced any of the above questions you wouldn't be wanting to cut funding from the NIH and you sure as hell wouldn't be saying things like, "They're just not trying hard enough to be healthy." 

The House vote on AHCA is tomorrow morning. I don't expect you to suddenly change your opinions. I am not a constituent, why would you listen to me? But, one in ten people have a rare disease, which makes you think how common are common diseases? Think about how many thousands of your constituents you will impact negatively by voting "yes" on this legislation.

For all of the other Representatives contemplating a "yes" vote, this message holds true for you too. 

You've pissed off the wrong crowd, Representative Brooks. Let me tell you, there's no group of stronger fighters than sick patients and our families. As my story shows, when we put our minds to something, we can make even the impossible happen. 


Shira Strongin // Sick Chicks, Founder




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