My Letter to My Representative About the Affordable Care Act

I know plenty of these stories have been going around the internet over the past few weeks, but I’m sharing this one not just to tell my story but to encourage others to write to their representatives and senators about the ACA, especially the Republican ones. Believe me, they listen.

I’m sending this as a handwritten letter, but here it is typed out.

Dear Representative Stivers:

I am writing as your constituent to ask that you stop voting to defund or repeal the Affordable Care Act, or any parts of it.

For the past decade, I’ve struggled with severe and intractable sleepiness for most of every day. My doctor thinks I may have narcolepsy, an incurable (but treatable) neurological condition. In a few days I’m doing a sleep study to find out for sure. At $8,000, this sleep study is completely unaffordable without insurance. The medication for narcolepsy can cost up to $50 per day without insurance, and I would have to take it for the rest of my life. I’m 25 years old, so that’s (hopefully) a lot of days.

I’m one of the lucky Americans who gets insurance through their employer. But before the Affordable Care Act, people with sleep disorders like mine could be denied coverage or even dropped from coverage they already had because there was no law preventing insurance companies from trying to save money this way. Why do I deserve to lose access to healthcare because of a neurological disorder that I never asked for, and did nothing to cause? Why are you voting to do this to your constituents?

One of the few proposals I have seen from ACA opponents as a replacement is health savings accounts. As I’m sure you know, all this means is that you can save for future health costs without paying taxes on the money you save. There’s a history of cancer in my family. I make $30,000 a year providing free counseling to uninsured Franklin County residents. I am already $160,000 in debt for the two degrees that I needed to qualify for this job. Please explain to me how I’m supposed to save enough to potentially one day pay for my own chemotherapy, which can cost thousands per month, while also saving for retirement, paying off that student debt, and providing for myself. At that point, things like having children, buying a house, and taking the occasional vacation become impossible. There’s being good with a budget, and there’s performing miracles. The latter is what ACA opponents would apparently have us do.

With all due respect, I am tired of being told that you and the rest of the GOP in Congress have wonderful plans to make sure we keep our health insurance. That plan should have already been written, critiqued, and rewritten, with input from doctors, hospitals, insurance companies, and taxpayers (especially the ones with chronic illnesses) before there was even any talk of repealing anything. People are going to die the day you repeal the Affordable Care Act.

In fact, because of my uncontrollable drowsiness, even driving a car is a dangerous thing for me to do. My doctor recommends I not drive during my flare-ups. But I have to drive for my job. And my job is how I have health insurance in the first place. I live in fear of crashing my car because of a momentary lapse in focus, and there is nothing I can do to reduce that risk besides receive medical treatment for this condition for the rest of my life.

I want to know how you plan to make sure that my insurance company can’t deny me coverage because of something I can’t control. I want to know how you’ll make sure that my teenage brother will be able to stay on our parents’ health insurance as he grows into adulthood and starts his career, just like I did. I want to know how I’ll pay for birth control — which, despite what some say, is a vital and normal part of healthy adult life that is used by 99% of American women.

I want to know how I’ll be able to afford preventative healthcare, which keeps both me and my insurance company from wasting thousands of dollars on treating illnesses that should never have happened, or progressed as far. I want to know how my friends who became insured through the Medicaid expansion are going to survive. I want to know what will happen to the 25% of American adults who will experience a mental illness at some point in their lifetimes — mental illness and mental health treatment itself also used to be considered pre-existing conditions. I want to know all of these details before Republicans in Congress repeal so much as a word of the Affordable Care Act.

Thank you for your attention to this. It is literally a matter of life and death.

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