Did you know Trump nearly got rid of the Affordable Care Act during his first time in office? What stopped him? Congress.
Now, it’s looking like Congress will largely be on his side.

So the chances of the Affordable Care Act surviving the next four years is very small.

This is why this is terrifying to me, and all the other chronically ill cuties in your lives.

My monthly IVIG infusions cost about $12,000 each. I get two of them a month. My insurance company spends about $250,000.00 per year, just on my IVIG. There is zero chance I could afford those treatments on my own.
I’m also on 6 other medications to manage my symptoms. Without insurance they would cost me about $1300 per month on their own.

Understand, every single one of these treatments and medications are directly related to my two diagnosed conditions, which would be considered pre-existing conditions without the ACA in place.

Also understand that I haven’t even mentioned the visits to the specialists I work with (between $300 and $500 per visit without insurance), the medical testing they need to do ($1500.00 per test on average), hospital stays for when my body simple stops working as it should ($12,000 on average per night), and emergency visits for those unexpected medical doozys that are a part of a chronically ill person’s existence (Average $2,600).

If the ACA is destroyed I can’t survive in this country. I would cost me nearly $350,000.00 to treat my conditions, per year. Without these medications and treatments I will die.

I don’t mean in a slow and grinding way either, I will likely unalive myself. The amount of pain and discomfort I am in without these treatments is so immense I cannot hold out for long.

For example, the last time we stopped IVIG (as a test to see how well it was working) I experienced the sensation of bugs crawling all over my body – including on my eyeballs – 24/7 for days. I told my doctors it was the symptom that was going to kill me. I spent several days trying not to scratch my own eyes out while ants continuously crawled out of them.

I also have body and head pain that leaves me in bed, in the dark, with no sound on resting on ice packs for days at a time.

Without medication, that’s my life.

Without IVIG my disease gets worse faster, my nerve endings die more quickly, my pain increases, my weakness increases, and I lose even more of the limited abilities I do have remaining.

So this is why we are terrified. We all have a story like the one above. We all have endless treatments and medications, tests and doctors visits, hospital stays and expenses. We all have unlivable conditions without those treatments and medications. Even with them we have managed to carve the best life we can out of a prison of pain.

Trump wants to take away everything that keeps us safe. He wants to let insurance companies refuse to cover the medical conditions that plague our lives because their profit margin (already between 3.22% and 10%) is somehow more important than our lives.