My day without health care

I got in a fight with my parents two nights ago. (Mostly with my mom–she was the one I yelled at. She yelled back. And I was the one who stormed off, ignoring her apology and plea for me to come back.)

When I turned 26, my dad signed me up for COBRA so I could stay on his insurance for 18 more months until I could either go full time at my current job or find another one with benefits.

My birthday was in October, and I still haven’t received my new insurance card or prescription card. It’s been fine, until last week when I went to go pick up some prescriptions on auto-refill. They tried to charge me over $1,000 for a prescription that normally costs me $1.61 for a 90 day supply. I had them hang on to it–I had enough of it at home–and immediately went to my dad, asking him what the hell was going on.

Since the incident at CVS, I’d been pushing the anxiety to the side, and Wednesday night it sort of violently erupted like Mount Vesuvius, showering my home and my family with ash and freezing all of us into place.

I couldn’t stop crying and hyperventilating. It was my biggest, scariest nightmare realized: did I have health insurance? What would happen if I got in a car accident on my way to my doctor in Baltimore the next day? What about the fact that I needed my Topamax refilled this weekend? Was I going to have to go without my primary anti-depressant?

I just couldn’t. I absolutely could not bear the thought of going through withdrawal yet again. Not now. Not again. Not after how hard I’ve worked to get to this point.

Mom tried to tell me she understood my pain, and I screamed at her and said she could never understand what I was feeling, and how dare she say that. (I told you I was freaking out.) Words were exchanged, I stormed out of the room, a door was slammed. (This behavior would have made sense 10 years ago, but I never really went through the screaming “you’re not the boss of me!” phase as a teenager, so I guess I’m doing it now in short outbursts.)

Apologies were sent an hour later, lots of my, “I’m just so scared, I have no control, I don’t know what to do,” and Mom’s “just hang in there.”

Yesterday, my dad made calls to the insurance company and told me they needed me to call in. I did so after I visited my psychiatrist (fitting that I should see him after a nuclear meltdown like this), they put me on hold for a half hour, then a nice woman named Victoria told me that it appears as though I don’t even have an account tied to my name for my insurance. She talked about creating a research investigation to create this account for my name, yadda yadda yadda, all I could hear in my head was “you don’t have health insurance.”

She never actually said those words, she never fully implied them even, but it’s like there was a Macy’s Thanksgiving Day Parade going around in my head, with big balloon floats all saying “YOU DON’T HAVE INSURANCE” and “YOU’RE SCREWED” and what did it matter what she was saying? At that moment, I was a chronically ill adult and didn’t have health insurance.

I was sitting in my car in a parking lot outside a 7-11, and all I could think about was how vulnerable I was to the world. I thought about my pill containers at home, and the limited days supply left of Topamax they held.

And I read back through my group message with my parents, and felt myself crying, re-reading the message from my mom, that she and my dad had already planned to set aside $1,700 to pay out of pocket for my medication.

$1,700.

I had just screamed at my mom last night, yelled about how my parents were letting me down, and even still they were setting aside nearly $2,000 to pay for my medication out of pocket. And that’s money they don’t really have. (I mean, who just HAS $2,000 hanging around?)

*

Dad made another call to a different hotline, and they were able to call my pharmacy and get it worked out that I have prescription coverage. I should be receiving my insurance cards in a week or so. I have no idea what’s to come of the “research investigation” that opened with Victoria today. I don’t really care. My prescriptions are covered, and I’m OK now.

*

The last 24 hours of sheer terror has only further cemented my long held belief that every single person in this world is entitled to access to affordable health care at all times. I can’t find the words for how scary it is to not know if you will be able to afford the medication that allows you to exist and function in the world.

I’ve always sort of had this idea of and slow burning fear about losing my health care, and for this 24 hour period, where I really thought it was gone for good, I can tell you that it’s unacceptable that anyone should live this way for any amount of time, ever.

Because here’s the thing:

I was always going to be OK.

To begin with, I was put on COBRA, which is a huge luxury.

Next, my dad, while not a practicing lawyer, went to law school, and is well-versed in how to navigate the healthcare system. He knows how to handle these phone calls. He knows how to make sense of what they’re saying.

And my parents were willing to pay out of pocket for my prescriptions. My mom said they’d refinance the house if they needed to. My brother even said he’d help out. I also know beyond a shadow of a doubt I could turn to my extended family.

I am the definition of privilege. And even wrapped up in this privilege, I experienced the utter terror of what it’s like to live without health insurance, and it’s not something I’d wish on anyone.

No one should need a lawyer father and parents who will refinance their house and $2,000 on the side just in case there’s a hiccup in their insurance coverage.

We need equal, affordable, quality access to healthcare for all–whether that’s Medicare/Medicaid for all, or another quality solution–I don’t don’t know what’s best. I can’t pretend to. But no one should live like this.

*

P.S., a huge thank you to my parents for being my everything through this. Wowza.

What a month

Comments

  1. Amen! That is so scary Shannon and you are someone who would be OK regardless. My only prescription a generic nasal spray jumped from $8 to $96 out of pocket last month. I was so pissed even tho I can afford it it’s not something I planned on spending $100 a month on. Literally nothing changed about my insurance. Our healthcare system is so broken.

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