Repealing Obamacare is Life or Death for People With ME/CFS

Repealing Obamacare is Life or Death for People With ME/CFS

This essay was originally published by TalkPoverty and republished by CommonDreams

I haven’t been able to get out of bed on my own in nearly two years—and I’m only 28 years old. 

For more than a year I was unable to speak, sit up, or eat solid food. In June 2015, first responders wheeled me into the emergency room, too weak to eat, drink, or elevate my head. I had been, essentially, waiting to die of dehydration. Besides administering some much-needed fluids, doctors offered little help.

I have among the most severe cases of chronic fatigue syndrome (sometimes known as myalgic encephalomyelitis, or ME). It’s a devastating multi-system disease that’s been given a patronizing name. The cause is still unknown, which makes getting a proper diagnosis—often necessary for insurance and disability coverage—near impossible.

When I was released from the hospital in 2015, my family learned that California’s state-administered Medicaid healthcare program, Medi-Cal, would not cover the ambulance ride to transport me home because none of my conditions were considered “legitimate.” I took the ambulance, anyway, and paid around $1,500 for the ride out-of-pocket.

Several months later, I became so dehydrated that my family decided to pay more than $150 a day for a nurse to come to our house to administer intravenous saline to keep me alive. Large doses of intravenous saline were, and still are, the only way to keep my body functioning.

It’s beyond unfortunate that my medical care has become a privilege costing me more than $1,200 a month. In the last year, I spent roughly $73,000 on my healthcare—more than double the annual income I made even when I was healthy and working full-time.

Historically, the National Institutes of Health (NIH), has allotted only a paltry amount of attention and funding—$6 million—to ME research. Some headway has been made in recent years, at least in part because advocacy through the #MillionsMissing campaign has brought the lack of funding to legislators’ attention. In November 2016, the NIH tentatively announced plans to increase research funding for ME to roughly $15 million for fiscal year 2017, but now, with Republicans controlling both Congress and the White House, there has been a change in what was promised. Not only is ME not going to get $15 million in government funding in 2017, in January the NIH said it will only allot $5 million, which is less than it received in 2016.

The amount is minuscule and shameful compared to the funds that the government has at its disposal. For the ME community, a substantial increase in government funding has been needed for decades. More funding would have an enormous impact. It would mean more research; more research would mean more biomarkers; more biomarkers would mean the potential for a diagnostic test, and these scientific breakthroughs would mean medical professionals would be able to better understand the disease, and therein lies the solution. Through this path there is potential for the medical establishment and government to compensate for decades of belittling patients who suffer from a devastating disease, finally bringing widespread legitimacy to ME and relief to millions of patients. That would be real progress.

But this progress may never happen.

Before Donald Trump shocked the world by winning the 2016 Presidential election, I was hopeful that the Affordable Care Act (ACA) would, in time, be expanded so that more of my medical needs would be covered by insurance. But now, barring a radical turn of events, that seems—at best—highly unlikely.

If the Trump Administration repeals the ACA, even simple treatments—like saline infusions and in-home nurse and doctor visits—will cost egregious amounts of money. My savings account has been zeroed-out, and I receive less than $900 in monthly disability checks. For the past year, my medical expenses alone have been more than $6,000 a month.

The plans that have been floated to replace the ACA do little for people with disabilities or low incomes. A replacement would likely offer a flat credit based on age, and it wouldn’t cover the care I need. What’s more, former House Speaker, John Boehner, who was one of the biggest opponents of the Act leading up to its enactment and subsequent roll out, recently said that Republicans will fall short of repealing and replacing it.

“They’re basically going to fix the flaws and put a more conservative box around it,” Boehner said, citing the Republican’s inability to agree on a replacement and further saying that “. . . if you pass repeal without replace, first, anything that happens is your fault.”

It would be unfair to say that the ACA has no room for improvement. But for me—and I imagine for most poor, chronically ill people—it is something to build on, not something to dismantle. Because what happens next, for us, could be a matter of life or death.

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My Domain

My Domain

For the most part, I have made an effort to keep politics off of this blog. I realize there are people who read my writing that voted for Trump, just as there are people who voted for Hillary Clinton. Hell, there’s probably even someone reading this who voted for pornstar, Mary Carey during California’s 2003 Gubernatorial recall election. I voted for none of those candidates. And while I may not have succeeded entirely at keeping this blog free of politics, I am an opinionated person, and I am human, so that’s okay with me. Now that the political landscape is shifting, I want to make a few things clear. The following is spurred mostly by interactions I’ve had on this blog as well as social media.

First, I want to make it clear that disrespect or hate of any kind will not be tolerated by me, even if the person does not deem it to be so. In other words, I will not hesitate to block, delete, or use any method available to combat trolls.

This blog is quite literally my domain, as is my Facebook profile and Twitter account, and all the other social media stuff. It’s silly to take it all so seriously. It is, after all, just a bunch of words on a screen made to look presentable by some otherworldly language that all comes together by thousands of miles of fiber optic cables underground. Okay, yeah, maybe it’s more serious than I thought.

But anyway, I feel this needs to be said in order to set some people straight. In the past, I have had people tell me what I should and should not write about, and more recently, I had someone tell me, during a heated Facebook argument, that I “lack comprehensive reading skills.” The first person was marked as spam, because anyone who tells me what not to write is just that — spam. And the second person, although he was once someone I called a friend, I blocked and deleted on Facebook. It is a bummer that it came to that, but here’s the truth for you: It doesn’t matter how close our relationship is, if you insult me — question my intelligence — I will absolutely cut you off. I have a debilitating disease that makes it incredibly hard to string together coherent sentences (let alone read the garbage this guy was saying). He has no idea. This post — these words I’m writing — is a damn miracle. I couldn’t do this a year ago. And by the way, I’ve had essays published in major publications like Men’s Journal and Quartz, so despite my disability, I think my reading comprehension is just fine. But for him to insult me in such a way is, as far as I’m concerned, on the same level as Donald Trump making fun of a handicapped reporter, which whether you believe he did or did not do on purpose is irrelevant — insulting someone is insulting someone regardless of how you justify it.

For the guy who recently insulted me, I had not heard from him in years — not when I first got sick, not when I was near death — not even a text or email. Yet he did not hesitate to lash out at me on a post which featured an exact quote from Donald Trump — one that was insulting, degrading, and disgustingly lewd. So that person is gone, thankfully. But my greater point is, and I recommend other people who value peace of mind consider it, anyone who does not bring something positive to my life, including my life online, is best dismissed. I cherish different views, and I encourage people to express their opinions with me, but they better be respectful is all I’m saying. 

Let me leave this post with an image. Think of online interactions as visiting someone at his or her home. If I comment on your post, I’m stopping for a cup of tea; if you say something on my post, you are coming over for dinner. Now, I can’t remember a time when I was a guest at someone’s house and I suddenly and belligerently started shouting insults. Well, there were a few drunken times during college, but hey, that was college. Anyway. Let’s keep it classy — stay respectful and all will be well (I hope).

*On a lighter note, we’ve sold 85 “Show M.E. the Money” shirts, which means roughly $400 will be donated to the Blue Ribbon Foundation, with an equal amount used to pay my medical bills. Yay! Now, there’s only TWO DAYS left to buy them and I REALLY want to get to 100. Let’s make it happen!