As you most likely know, the debates around healthcare laws and possible replacements for the current plan is near and dear to my heart. Through my own health situation, I have learned extensively what the ACA does and doesn’t allow, and where the failings are. I’ve talked abut how the ACA is valuable to me and my situation, and I’ve mentioned extensively on social media how certain protections provided by the ACA quite literally keep people alive. In my case, not receiving treatment can lead to my death, but in an incredibly lengthy process that could take years (the more pressing issue for me is being a semi-functional human being). For example, a 2015 study found that RA patients have a significantly higher risk of death, especially from cardiovascular and respiratory complications. Not receiving treatment will lead to my immune system attacking more and more organ systems; the last time I went off of my treatment (to try a new one), I developed endometriosis. The next time, I could develop heart disease.
One of those people fighting a much more direct possibility of death without the protections of the ACA is my friend Olivia Cline. We met through our graduate program and bonded over our chronic illness struggles, especially since so many of our peers did not understand what the chronic illness life is like and how it affected our education. She has written this post about how her life is literally dependent on the ACA protections, and I cannot emphasize enough how important it is that you read this.
I had big plans for Labor Day Weekend this year – UNC Chapel Hill football game on Saturday, taking my dogs to the dog park on Sunday, hiking the Blue Ridge Parkway on Monday.
Instead, I spent Saturday and Sunday in the throes of one of the worst vomiting spells I’ve ever had, featuring a trip to urgent care on Saturday afternoon and the emergency room on Sunday morning because the same anti-emetics they give to chemo patients weren’t touching it and I was so dehydrated I was bleeding from the nose every time I threw up, and Monday getting liter after liter of IV fluids to make up for everything I’d lost.
This isn’t an atypical weekend for me, either. I have Ehlers Danlos Syndrome (EDS), a multi-systemic connective tissue disorder that affects my joints, cardiovascular system, bladder, and digestive system, and I’m sick so much that the local emergency department, pharmacy, and infusion centers know me by sight. I’m 24, but by my “current medications” list, you’d think I was 80. Within the last year alone, I’ve had nine surgeries. I have a central venous catheter (a type of permanent IV) in my chest, and I need two liters of IV fluids a day to stay conscious – and even that’s not a guarantee.
I also have a feeding tube – and this is where my life gets really complicated. I’m on my second type of tube. The first one failed two months ago, because my stomach rejects anything I put in it. This one, which bypasses my stomach, is failing for similar reasons – my intestines can’t handle anything close to a formula rate that would give me enough calories to keep me alive.
Effectively, my body is starving itself to death.
We have one more option after this, which is called Total Parenteral Nutrition (TPN) – basically, nutrition straight into my veins – but TPN thrashes your liver, usually causing patients to need a transplant within ten years or so, and putting me on TPN means I might be looking at planning my own funeral before I turn 35.
And to top all that off, I opened a Twitter news alert today, with a pit of dread in my stomach, to discover yet another threat to my health – this time from Congress.
As of now, I’m blessed to be insured. But I cost tens of thousands of dollars a year – at artificially inflated healthcare prices – to stay alive. If I move to TPN, that alone will cost a thousand dollars per day. It would be impossible for anyone, even my relatively well-off family, to pay for my healthcare at that rate.
If the Affordable Care Act is repealed, patients who cost insurers the amount that I do will be the first to suffer – there are countless reports demonstrating as much. Healthcare for the sickest relies on funding from coverage for the healthy, and like all the others, the latest iteration of GOP healthcare legislation repeals personal and employer mandate, draining a significant chunk of funding from the insurance market.The Deadly Consequences of Incorrect Healthcare Reform Click To Tweet
Already, examples abound of insurance companies refusing to cover certain treatments because they’re “not medically necessary” or “not the accepted treatment for that condition.” Unfortunately, a lot of treatment for rare patients like me is experimental – and expensive. Even if we don’t lose coverage entirely, the covered options available to patients like me will shrink exponentially.
A major part of the anti-Obamacare rhetoric has shaped itself around Paul Ryan dubbing Obamacare a “nightmare” back in March. For me, though, a far greater nightmare is not just fighting to find a solution that will keep me from starving, but fighting to do it before a bunch of men in Washington DC cut off my access to healthcare.
Personally, I’d rather fight my body.
Olivia Cline is an adjunct professor and medical publisher trying to make North Carolina better one classroom at a time. When she’s not in the classroom (or in the hospital), you can find her in the mountains, taking too many pictures of her dogs, or yelling about sports on the Internet. (Go Heels!) You can find Olivia on Instagram (and her dogs’ amazing Instagram) and Twitter.
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