Late at night, while most of us were sleeping, the Senate voted to kill me. Im sure that some of you will call me dramatic and say that Im exaggerating. Theyre not going to repeal the Affordable Care Act without replacing itand with something better!
Ive heard this so many times, yet even as the repeal has been voted on in the Senate and has been introduced in the House, I still havent seen a replacement bill introduced. Hell, I havent even heard a vague idea from one of the lawmakers so convinced that the ACA is terrible that theyre willing to strip 30 million Americans of their insurance. All Ive seen is a rejection of any measure put forth to save essential aspects of the bill, each denial like a noose tightening around my neck. Keeping young people on their parents insurance until theyre 26. Rejected. Coverage for pre-existing conditions. Rejected.
But as I have been told so many times by those of you who support taking away my insurance, my ability to live: health care isnt a right. This is often said with a smug incredulity at the idea that I feel entitled to lifesaving treatments, as if Im asking for a Lexus instead of an ability to be hospitalized without complete financial ruin.
The one thing that Ive noticed the most is that there seems to be a fundamental misunderstanding by non-disabled and non-chronically-ill people about what its like to need insurance and live with expensive medical issues. Let me give you an idea.
I was diagnosed with Crohns disease when I was 15, an autoimmune disease that has no known cause and currently, no cure. In the nine years that Ive had it, I have had over two dozen intestinal obstructions, multiple hospitalizations longer than most Americans vacations, and treatments that cost as much for one dose as many people make in a year. Ive almost died from infections caused by the medications that are supposed to keep me healthy. Ive suffered suicidal thoughts from medications intended to put me in remission. While you see my insurance as a luxury, I see it as the way Im able to treat the hellish smorgasboard of symptoms and complications that I deal with on a nearly constant basis.
Now, youve voted to take that away from me. What does that mean? My medications, which can cost $20,000 a treatment every eight weeks, wont be covered. And no, I cant take a cheaper one. You see, that isnt how medication works, especially for an incurable condition thats like a moving target. You use the medication that works at the time, hope that its side effects dont cause more harm than good, hope it puts you in remission, and hope that remission lasts for more than a few years before you have to move on to the next option.
My medications, which can cost $20,000 a treatment every eight weeks, wont be covered. And no, I cant ‘take a cheaper one.’ You see, that isnt how medication works, especially for an incurable condition thats like a moving target.
Add onto those costs the frequent trips to the doctors: not just primary care physicians and gastroenterologists, but specialists for whatever problem Im dealing with at the time. In the summer of 2014, it was infectious disease doctors and MRIs every two weeks to monitor and treat the osteomyelitis (bone infection) I developed in my hip because the medication that kept me in remission suppressed my immune system too much. Before that diagnosis, it was the rheumatologist and the orthopedic surgeon who were trying to figure out why I spent my nights screaming in pain.
Oh, and you cant forget the hospitalizations. The one that accompanied the osteomyelitis, an eight-day stay at Georgetown University Hospital, was hundreds of thousands of dollars. Two years before that, an 11-day hospitalization for an intestinal obstruction rang in around $300,000.
Between medications that cost tens of thousands of dollars, hospitalizations that cost hundreds of thousands of dollars, frequent doctors appointments, procedures and tests, and regular prescriptions, Ive already had probably over half a million dollars of medical bills covered by insurance. Im 24 years old. If those insurance caps return when the Affordable Care Act is repealed, how long will it take for me to max that out? You do the math.
The thing is, no matter what I say, I wont convince the politicians who voted to repeal the ACA and their supporters to see my point of view. Theyll just say that Im a special snowflake millennial who needs to work harder, despite the fact that Im chronically ill and hold three part-time jobs that can total over 40 hours a week. Though make no mistake, my employment status does not make me any better than my chronically ill and disabled friends who are unable to work right now. I believe that our value should not be defined solely by our ability to contribute to a capitalist economy.
The thing is, no matter what I say, I wont convince the politicians who voted to repeal the ACA and their supporters to see my point of view. Theyll just say that Im a special snowflake millennial who needs to work harder, despite the fact that Im chronically ill and hold three part-time jobs that can total over 40 hours a week.
Right now, I have health care. Im covered through my parents insurance, and I have the option to be covered through some of my jobs. But now I have to live in fear if the ACA is repealed. I could be kicked off my insurance, since I have it from my parents. If I lose my job, I could be denied insurance due to my plethora of pre-existing conditions. And even if I have insurance, if those lifetime caps return, my time to be able to use that insurance is limited.
So to the politicians who voted to repeal the ACA, I say this: I hope that you have to feel the pain that I have to go through. I could try to be a better person and say that I didnt wish this on anybody, but at this point, the only way for you to understand the real, heartbreaking pain that millions of Americans like me are feeling is to actually experience it. I want you to know what its like to cry yourself to sleep because you dont know if youll be able to access the medications that keep you alive. I want you to know what its like to feel guilty about how much your treatment costs, even though you know theres nothing you can do about it. I want you to know what it feels like when politicians prioritize their hatred of a president and a policy over your literal means to live. I want you to know what its like to live in pain and sickness and to have people say that your desire to alleviate that suffering without experiencing complete financial ruin is entitlement.
I want you to know the horror, the heartbreak, the pain, and the fear that 30 million Americans losing their health insurance will feel. I want you to fully experience the impact of the suffering that you have inflicted upon us. Its just too bad that the world doesnt work this way.