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To the Congressman Who Said People Without Pre-Existing Conditions 'Lead Good Lives'

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As many of you may know, the House of Representatives passed an act to repeal and replace our current healthcare system. Lots of people have lots of opinions on it, and have been sharing them freely on social media platforms. This post isn’t to necessarily give you my opinion on this act, so much as it is to share my story and parts of my story that are affected by the healthcare laws. Many of the things I share in my story are not easy for me to talk about, nor is it easy for me to know that these things are now public for anyone to read, but I feel it is absolutely necessary for me to tell this story in the hopes of helping, not only myself, but others who have similar stories.

Until the act passed, I had a hard time finding any recent news stories relating to the GOP-penned American Health Care Act (AHCA). It seemed that many had forgotten about the GOP agenda to repeal and replace the Affordable Care Act (ACA), but I had not forgotten, because I cannot forget. It is a reality that I live every single day. Finding adequate and affordable health care for a chronically ill person, like myself, is by no means easy, but if the AHCA becomes law, it will become exponentially more difficult.

I have heard people respond to this with a clear-cut “Of course the sick should pay more, they use insurance more!” They seem to forget that we already pay more. We pay more copays because we have more appointments, we pay more for emergency room visits as we are often forced to find care there, we pay more for diagnostic testing (which is often done routinely, I pay $100 every visit with my cardiologist just for the EKG), we pay more for all of our prescriptions that we require just to simply stay alive. Without adding the cost of a higher premium and higher deductible, we already pay far more for health care than any average healthy able-bodied person.

We also have the added difficulty of making less money than most healthy able-bodied people. Those of us who are disabled by our chronic conditions find ourselves unable to work, or unable to work a sufficient amount to actually make a living, and yet, people are crying out that we should pay more for our insurance, as if we are all rolling in money, laughing at the able-bodied people who have to work jobs and don’t get to stay at home all day writhing in pain. As if we have somehow duped the system into letting us pay the same price for insurance as a healthy person so that we can use all of that extra money, not going to premiums, paying for lavish vacations and big mansions rather than using that money to pay for all our office visit copays and bills for what insurance won’t cover.

I’m sure some of you are thinking, “Well, if you’re really disabled then you would collect disability, so you must be able to work.” In answer to that, I suggest you pop over to my earlier blog post 5 Things to do While Waiting on Disability to get an idea of just how difficult it is to get on disability. In short: the wait in the US to get on disability can be as long as two to three years. Two to three years! Imagine waiting two to three years to be able to have a regular income, all while being asked to pay more for the insurance your life depends on. A good portion of the US can’t even wait two to three years to get a new iPhone!

Why not go on Medicaid? A) because not all states have expanded their Medicaid. For instance, in Georgia, to get on Medicaid you have to make under a certain amount a year and be pregnant, over 65, under 18, or disabled. Hey, I’m disabled so… oh no, wait, that’s right, I’m still in my two to three year wait for the government to confirm what my doctors already know. Instead of receiving Medicaid, I was sent a letter from the Georgia government telling me that I am exempt from having insurance this year. Except, I need it to receive the healthcare my life depends on. So, instead, I pay more than I can afford and rely on the generosity of family to help me cover the prices of my premiums, while bills still pile up for all the things that my insurance already doesn’t cover.

B) The ACHA that just passed in the House cuts funding to Medicaid starting as early as 2020 (should it pass Senate) and then will continue to cut the amount of funding each state receives, meaning less people will be covered. Less disabled people, less pregnant women, less children, less elderly, and less people without the financial means to cover the cost of healthcare. People will die. This is not a hyperbole, this is the truth. I am very likely to be one of those people.

In a recent interview about the AHCA and its views on pre-existing conditions Rep. Mo Brooks (R-Al) stated the following: “My understanding is that 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, you know, they are doing the things to keep their bodies healthy,” he said. “And right now, those are the people who have done things the right way that are seeing their costs skyrocketing.”

“In fairness, a lot of these people with pre-existing conditions, they have those conditions through no fault of their own,” he went on. “And I think our society, under those circumstances, needs to help. The challenge though is that it’s a tough balancing act between the higher cost of these mandates which denies people coverage because they can’t afford their health insurance policies… and having enough coverage to help those people truly in need.”

Well, Mr. Brooks, there are a few things that I would like to let you know about the choices I made in life that landed me where I currently am: disabled with multiple chronic illnesses that have impacted and changed every single aspect of my life.

I am not responsible for my disability. I did not choose to be disabled. I did not choose to have a genetic disorder. I did not choose to have multiple chronic illnesses. I did not choose to endure trauma, assault, and abuse in order to create complex mental illnesses.

Let me make this as clear as possible: all the good choices in the world would not have prevented my illnesses or my disability. I should not have to prove my worth to you. I should not have to prove my right to exist to you. And I should not be financially penalized purely for my existence.

I am not a burden.

I am a mother. I am a teacher. I am a student. I am a partner. I am a daughter. I am a sister. I am an aunt. I am a friend. I am a writer. I am an artist. I am a believer in good. I am an optimist. I am a force to be reckoned with. I am as fierce as I am kind. I am a bleeding heart who carries the burdens of the world on my shoulders, as if it were my job alone to save it. I am a US citizen. I am a world citizen. I am a human being. And I have a disability.

I will not be brushed aside, Mr. Brooks. I will not be forgotten. I will not be told that I am less deserving of human decency because I wasn’t built the way you would like for me to have been built. I will not apologize to you, nor anyone else, for my existence. And I absolutely will never stop fighting for disability rights to be seen as human rights.

With that, Mr. Brooks, I conclude my case. However, I would absolutely love to hear from you so that I can tell you even more about how ill-informed and misguided your words truly were. Feel free to contact me at anytime. I always have time to correct misinformation.

For my readers, if any of you made it this far, please, feel free to share this with your friends, family, crazy neighbor across the street, senators, and congressmen. Yes, I do plan on sending this to Mo Brooks. I also hope to get it to as many Senators as possible to help inform their vote as they review the AHCA that the House recently approved.

Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community.

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Originally published: May 9, 2017
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