To the Senators Who Voted Against the ACA, From a Chronically Ill Teen

I am 15 years old, and I have five chronic illnesses. I could go into specifics on which illnesses and what symptoms they cause, but at this moment that does not matter. What matters right now is how they could affect my future and more importantly my access to health care.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

Last night the Senate took a vote on the Affordable Care Act. Donald Trump has said that if the ACA is repealed, he does not support repealing the clause that allows those of us with preexisting conditions to remain insured. But just before 1:30 this morning, senators voted on an amendment that would have kept the pre-existing conditions clause intact even if the ACA is repealed, and they voted against it. No action has been taken yet on effectively repealing the ACA, and no further statements have been made on the issue, but I cannot help but freak out. I am an American, and I do not feel safe in my country at this moment.

For those of you who do not know, this clause states that those of us with pre-existing conditions, such as my Ehlers-Danlos syndrome, cannot be discriminated against for our conditions when applying for insurance. Sure, there will always be loopholes that insurance companies use, but for the past few years this bill has proven effective in keeping many Americans with disabilities, like myself, insured. Most of you reading this know that being uninsured would be a huge issue. It is a large cost, unhealthy, and very scary.

The thing about being chronically ill is that the value of insurance jumps from valuable to almost irreplaceable. My insurance is what allows me to go to physical therapy to keep my joints moving, rush to the ER when I am having a suspected stroke, and go to pain management when life gets out of hand. This is a privilege to have that many Americans take for granted, but I do not. I see how much my insurance affects my quality of life every day, and I see how much worse off I could be without it; unfortunately this scenario could become mine and many spoonies’ realities. We could become stuck contemplating every doctors appointment, ER visit, and physical therapy because without insurance these rates would be sky high. Who knows, this could not be repealed in the end, but in the moment I have right and reason to speak out.

To the senators who voted to against this last night, please hear me out. My insurance is everything and without this clause I can easily be denied this privilege. This law changes my life every day. It allows me to take medications that get me through my school day so that some day I can be a working citizen of the United States. I will not stop fighting if you repeal this bill, trust me my voice will not be silenced, but I urge you to reconsider your decision. Take a minute to listen to the voices of all the people with illnesses. Hear our struggles. Hear our success. Hear how this “simple” decision could make or break my life. Vote to keep the pre-existing illness clause. Vote to keep me alive.

Lead photo by Thinkstock Images