Dear Spoonies*, Loved Ones of Spoonies, or People Who Just Kinda Give a Shit,
I have a mission for you.
It’s happened. Donald Trump is our president-elect, there will be a Republican majority in the House and Senate and an open vacancy in the Supreme Court.
Our health care is at risk.
If you’re like me, you’ve spent the last two years hearing Republicans promise to “repeal ObamaCare Day One” with a churning stomach. Not that churning stomachs are out of the norm for a lot of us. We’re the chronically ill, and nausea is often a part of the package deal. But this was a different sort of nausea.
This was fear.
Fear that the items in this new law that literally save our lives — the pre-existing condition clause, the ban on lifetime and annual caps, the requirements for increased mental health coverage, etc — will be whisked away in a cloud of partisan dust in the political tug of war that often feels like it’s more about one team winning and less about the lives they represent.
I can honestly understand how that happens. When there are people whose job it is to literally “whip” congressmen into the party line (who consequently control their funding), it’s easier to remember the demands of your colleagues than the demands of your constituents.
So if we want the parts of the Affordable Care Act (which is the same thing as ObamaCare, in case anyone was confused about that, further referred to in this article as “ACA”) that are so vital to our continued prosperity and livelihoods to remain intact, we have to make it personal. We have to tell our stories and help our representatives understand the real consequences if they fail to replace the ACA with a substantive measure that protects its disabled citizens.
I’ll go first.
I was a perfectly healthy woman until I wasn’t. I was studying my area of passion, Dramatic Literature, at a wonderful university, and I was still in the “what do I want to be when I grow up” phase of my life when, while studying abroad at the age of 21, I got sick. And I didn’t get better. I took a semester off, thinking it would take at most a month to figure out what was wrong and get back into my normal life.
That was five years ago.
It took six months to get my first diagnosis, gastroparesis (paralysis of the stomach). It took two years to get my second, dysautonomia (malfunction of the autonomic system), and finally, four years later, the underlying diagnosis of Ehlers Danlos Syndrome (a genetic condition where my collagen is too loose, which creates problems throughout the entire body). There is no cure, only symptomatic treatment. I am going to be sick for the rest of my life. I am going to need extensive health care for the rest of my life. I have eight medications (currently), five specialists, a feeding tube, a central line, a home care company, and a gastric pacemaker.
I became sick while I was still on my parents’ health insurance. I knew that when I aged out of their plan, I was going to need a new health insurance plan, and that those plans could either deny me or charge me unaffordable premiums because of my pre-existing condition.
The Affordable Care Act’s ban of discrimination towards people with pre-existing conditions truly saved my life. I honestly can’t even begin to imagine what would have happened to me without it.
Insurance companies lose a lot of money on me. They’d rather not have me. The fact that they try and deny every claim I make, before I call and insist several times that it’s covered in my plan, proves this.
Many people have tried to assure me that the pre-existing condition clause could never go away. It’s too popular and makes too much sense.
Of course, a lot of those same people assured me Donald Trump would never be president. Or even win the Republican Primary. My life and the lives of people like me are too dependent on this Act to trust the word or common sense of politicians who have yet to agree on one concrete plan or provide solid language that will truly protect disabled people such as myself after they “repeal ObamaCare on Day One.”
Even if insurance companies are forced to accept me (or other 26 year olds with chronic illness) despite my pre-existing condition under whatever new plan happens during the next administration, I worry about the drop in other regulations the ACA put in place. The discriminatory overcharging of women is one concern. The lifetime and/or annual caps are a bigger one. My family knows from personal experience the stress that this can cause. A few years ago, my cousin had Leukemia, and his treatments cost enough that he was nearing his insurance plan’s lifetime cap of one million dollars — yes, relapsing cancer can easily cost that much. I remember our family sitting at Thanksgiving dinner, worrying about hitting this cap, and what we would do to protect my cousin if this should happen. Sadly, he passed away before this became a problem.
I get my daily calories from an IV bag full of a liquid that costs, at my insurance company’s negotiated rate, about $200 a day to formulate, produce, and deliver to me. That’s just one aspect of my regular, expensive, lifelong medical care. I could hit a million dollar cap at an alarmingly fast rate.
And before you feel too bad for my insurance company, let me remind you that they made a net income of $2.4 billion in 2015, which was up from $2.0 billion in 2014. I paid them for a service I didn’t need for 20 years before I got sick. Believe me, I wish I didn’t need their services now.
I am afraid for the people with chronic illness who turn 26 under the Trump administration (or younger, if the ACA is repealed). I am afraid for myself. I am afraid for the many who are like me. I am afraid that our health care will be taken away. I am unable to work, I am still waiting for my disability hearing, and, even if I am approved, Medicaid is becoming more and more restrictive in my state. I am afraid of not being able to pay for my life.
I guess the question I would ask the politicians who are considering striking down these measures, that admittedly make insurance companies’ lives a little bit harder, would be this: is my life worth saving?
Is yours? Because if you are reading this and have the good fortune to not have a serious health condition or a loved one who does, let me assure you, that could change tomorrow. I was perfectly healthy until I wasn’t.
If you think you and your loved ones’ lives are important, please, I literally beg you, write and call your representatives (you can find their names and contact info here) and ask them to keep the parts of the ACA that you feel are important and vital to our well being (read more about the law here.)
If you are someone who has personally been “saved” by ACA, whether because of the new regulations on insurance companies or the subsidies that allowed you coverage in the first place, I urge you to scream it from the rooftops. Consider this your Twilight Bark Alert. You can blog on this website, or on Medium, or talk about it on your social media, or with the people you interact with in your daily life. More pressingly, I urge you to direct your megaphone and your personal experiences to your elected officials. We can put a face and a personal life to their policy arguments. Paul Ryan has a specified area of his voicemail just for the ACA. I urge you to use it. If you’re like me, and suffer from Chronic Voicemail Babbling Syndrome, I suggest writing down a few notes (or even a full script) before making the call. It helps a lot! Also, if there are things that have negatively impacted you because of this new law, talk about those things, too! This law is almost certainly going to change. We might as well take what advantages we can.
Let’s get to work. If we try, we can protect ourselves and each other.
Love and spoons,
P.S. If you want a pretty good break down of the logistics of the future of the Affordable Care Act, I suggest this article.
Leah is a 26 year old suburb-of-Philly native. She has Ehlers Danlos Syndrome – Hypermobility Type, Gastroparesis, Dysautonomia, a feeding tube, a central line, and a battery operated stomach. She is the proprietor of this site, as well as the sassy Disney blog The Magical World Of.