Late at night, while most of us were sleeping, the Senate voted to kill me. I’m sure that some of you will call me dramatic and say that I’m exaggerating. “They’re not going to repeal the Affordable Care Act without replacing it―and with something better!”
I’ve 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 haven’t seen a replacement bill introduced. Hell, I haven’t even heard a vague idea from one of the lawmakers so convinced that the ACA is terrible that they’re willing to strip 30 million Americans of their insurance. All I’ve 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 they’re 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 isn’t a right.” This is often said with a smug incredulity at the idea that I feel “entitled” to lifesaving treatments, as if I’m asking for a Lexus instead of an ability to be hospitalized without complete financial ruin.
The one thing that I’ve noticed the most is that there seems to be a fundamental misunderstanding by non-disabled and non-chronically-ill people about what it’s like to need insurance and live with expensive medical issues. Let me give you an idea.
I was diagnosed with Crohn’s disease when I was 15, an autoimmune disease that has no known cause and currently, no cure. In the nine years that I’ve had it, I have had over two dozen intestinal obstructions, multiple hospitalizations longer than most American’s vacations, and treatments that cost as much for one dose as many people make in a year. I’ve almost died from infections caused by the medications that are supposed to keep me healthy. I’ve 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 I’m able to treat the hellish smorgasboard of symptoms and complications that I deal with on a nearly constant basis.
Now, you’ve voted to take that away from me. What does that mean? My medications, which can cost $20,000 a treatment every eight weeks, won’t be covered. And no, I can’t “take a cheaper one.” You see, that isn’t how medication works, especially for an incurable condition that’s like a moving target. You use the medication that works at the time, hope that its side effects don’t 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, won’t be covered. And no, I can’t 'take a cheaper one.' You see, that isn’t how medication works, especially for an incurable condition that’s 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 I’m 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 can’t 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 doctor’s appointments, procedures and tests, and regular prescriptions, I’ve already had probably over half a million dollars of medical bills covered by insurance. I’m 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 won’t convince the politicians who voted to repeal the ACA and their supporters to see my point of view. They’ll just say that I’m a special snowflake millennial who needs to work harder, despite the fact that I’m 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 won’t convince the politicians who voted to repeal the ACA and their supporters to see my point of view. They’ll just say that I’m a special snowflake millennial who needs to work harder, despite the fact that I’m chronically ill and hold three part-time jobs that can total over 40 hours a week.”
Right now, I have health care. I’m 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 didn’t 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 it’s like to cry yourself to sleep because you don’t know if you’ll be able to access the medications that keep you alive. I want you to know what it’s like to feel guilty about how much your treatment costs, even though you know there’s 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 it’s 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. It’s just too bad that the world doesn’t work this way.