Repealing Obamacare Could Kill me

The Affordable Care Act (affectionately termed Obamacare) is likely to be repealed in a few months.

I’m told personal stories are powerful, so I want to share mine.

I was always going to be healthy. Aside from a slight concern when I quit a job that offered health insurance and took another job without it, I never once considered I would need a team of doctors. I boast a background as a college athlete, professional mover (yes, heavy furniture, etc) and otherwise health-aware person.

But my body lied to me.

Nearly four years ago, I was diagnosed with Ankylosing Spondylitis, a severe disease that causes rampant and painful inflammation in the spine and other joints in the body, sometimes leading to the growth of bone spurs that fuse spinal vertebrae and hips. I wasn’t diagnosed by a healthcare provider at first – I found out I inherited this disease from my father after matching our symptoms.

Four years ago, I had a dilemma.

Four years ago, a pre-existing condition meant I either had to pay extra or could be lawfully denied health insurance – a penalty, if you will, for having gone off and inherited a disease. Essentially, I needed insurance before a doctor before a diagnosis before I could begin necessary medications. So, I had to sit still for a couple months hoping the insurance company wouldn’t question recent medical records, suspicious about a possible impending diagnosis after several recent urgent care visits in my charts. I couldn’t afford to let it slip that I had a pre-existing condition. I couldn’t afford to wait for treatment, either, but I had to.

I navigated the loopholes and was finally able to get insurance, an official diagnosis, and begin treatment; but at every turn I researched the projected out-of-pocket costs for “extra” procedures, whether it was labwork to check my liver and kidney or an x-ray to see how far my AS had progressed. I said no to the procedures because I would have had to dip even deeper into rent money to pay for them. I would have become homeless for the sake of my health. What if my kidneys were failing as a result of the harsh medications I was taking? I had to live on hope and a prayer. The kidneys would have to wait.

Six months later, the Affordable Care Act was implemented. I was delighted I would have access to a new plan within my price range (thanks to a subsidy) to provide the same or better coverage. I was relieved to know I could treat my disease more effectively, monitor its progression, and check on my vital organs during treatment. While I still requested out-of-pocket cost projections, I was less concerned that I would become homeless in the process. Thankfully, it turned out my kidneys were fine.

The Affordable Care Act made me feel invested in a system where I felt I had options, control, and more transparency. I learned about legislation efforts after testifying in 2014 in favor of CA SB 1052. I knew I could be part of fixing access issues and funding changes alongside state legislators and other advocates. The ACA helped me believe in a system that could be enhanced and improved each year, by each state, while following federal guidelines and laws.

I have complained about the ACA, but never from the standpoint that it should be abolished. Rather, I’ve advocated for its continued improvement, especially on behalf of chronic disease patients. I imagined I would continue doing so under a Clinton presidency, supporting her plans to expand Medicaid, raise funds for community healthcare centers, lower out-of-pocket copays and deductibles, and especially tackle skyrocketing drug prices.

But Clinton did not win.

With a Trump presidency, a conservative-leaning Supreme Court, and Republican-controlled Congress,  repealing the Affordable Care Act is slated to be one of the first actions after the inauguration. I daresay it is an imminent threat.

When and if the ACA is repealed, those on Medicaid are likely to suffer most drastically, followed by those with plans purchased through or a state health exchange program. We do not know exactly what the replacement for the ACA will look like, but following its repeal, 22 million people will lose their health insurance and be faced with a reality worse than the health insurance market four years ago. I will be one of the first to lose health insurance and healthcare. Additionally, Trump’s proposed replacement plan to Obamacare will cost more than the ACA and insure fewer people  (<go on, read the article).

Without healthcare I will likely be hospitalized and rely on already-strained charity financial programs or credit cards to pay bills and medication co-pays. The cost of my care will become a larger burden than it currently is as I face health emergencies that require immediate, intensive care. With no income due to disability (and impending continued cuts to Social Security), I will likely become homeless. I’ll be looking for food, clothes, shelter, donations for my treatments and medications, and a new home for my cats. And I may die.

I’m not joking. This is what my reality will be. And there are millions more just like me.

Those who are sick and poor (among many other things) will soon face the reality of a severe and sudden lack of resources to survive and thrive. This is a threat to our lives and health.

I’m terrified that, because Trump was elected alongside a Republican-ruled Congress, I will die.

If you learned something by reading this, or appreciate my writing, please consider supporting my work with a $3 tip at Your support will help pay my internet bill so I can continue my advocacy.

6 thoughts on “Repealing Obamacare Could Kill me”

  1. We’re going to get through this.
    We’re going to stand together and survive.
    We have to make our voices heard and you are doing so by writing this.
    Thank you for sharing your story.
    We’re going to make it!! As long as we stick together we will make it.

    Liked by 1 person

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