Apologies, first of many
In mid-March, early stages of the quarantine, I was trapped, again, in the health care system. My MS had flared for the first time in 10 years - my legs and seat (#numbbum) felt numb. It was the most unsettling feeling because it was both of my full legs and feet, as well as my seat area. I walked around and prayed that my pants didn’t fall down or that i hadn’t wet myself. Not great.
I met with my neurologist, whom i LOVE, and she said it was time to start up what we call in MS Land, a disease modifying therapy (read: strong ass meds). I had been using a different course of meds to secondarily treat my MS and that clearly wasn’t working any longer. Enter in the fight to start a medication called, Ocrevus.
Ocrevus is an infusion given over the. course of 5-6 hours once every 6 months. The level of how IDEAL this was for me cannot go unnoticed. The ease of my daily life would be so nice - no pills to take, nothing. Just infuse every 6 months, like a nice tea. Major down side - this med is EXPENSIVE. Like it costs more than i make in a year.
I knew from previous experience trying to get these types of meds that befriending the drug company is a wise choice, especially when saddled with shitty employer health care. I had managed to get my other medications covered, a hand surgery covered, but this medication was going to be the most uphill of the uphill battles. Especially since my health insurance is not actually a health insurance, but a claim watcher. I’m not getting in to that right now because the point of this story is that one day during the early days of working from home due to a COVID-19 quarantine lockdown, i was one the phone with the rep from the health insurance company who said she was making it her day’s mission to get me started on this treatment. There was these layers of complications that didn’t actually need to be so complicated - in the network, out of the network, i called her and she didn’t call me back, they never called me, i need this form to be signed, etc etc etc at one point they wanted me to submit my tax return to this other company to prove my financial need (i was like um, NOOOO? i have already secured my financial asisstance through the drug company i don’t understand why i need to submit my tax return?).
This women asked me point blank:
“Hannah, I am so sorry this is happening to you, what can i do to make this easier”
and i said:
“Your company could approve this treatment.”
and she made some frustrating noises and then said:
“It isn’t us. We are trying our best but this medication is very expensive and we are trying to keep the costs down for your colleagues. We need to find a way to get this treatment cost down. You have a very expensive medical condition-”
I interupted her because i had started to cry and i said,
“I’m sorry i have multiple sclerosis. There is not a cure and I am sorry that i have this expensive illness. I don’t want to make health care more expensive for my colleagues...I’m just really sorry but I need that treatment.”
She immediately tried to backpedal her statement and then she raised her voice:
“Hannah, you know that wasn’t what I meant, Oh gosh, you KNOW that.”
and then i don’t really remember what else i said but shortly thereafter we both were yelling at each other and then i hung up the phone.
I apologized for having multiple sclerosis. and that makes me so sad to think about.
However, i did eventually win my fight and got my drug for free from the drug company. take THAT health insurance.