Posted by I sometimes feel like this blog has become a vent for my frustration with the absolute dumpster fire that US health insurance is.
Ever since my doctor’s office decided to discontinue offering Inflectra, it has been an absolute emotional roller coaster, that has left me drained. There is a medication that helps me be a healthy, happy productive member of society, and I have insurance! This is already RARE with this disease. The third biological medication I was on, worked!
But no. Cue bureaucracy. After I went to an infusion center where I was medically assaulted, I switched to home infusions, and I thought- this is it! Getting your medication from the comfort of your home, not having to drive anywhere, so far has been great.
A week ago, I received a call from the infusion company, telling me that my Inflectra prescription had expired. Weird, because usually it gets extended automatically. She said she’d take care of it, and we need to wait for prior authorization from my doctor. My doctor’s office informs me that the prescription is authorized, but we are waiting for insurance. In the meantime, I am trying to re-schedule my appointment with my nurse, because the “patient coordinator” is not actually doing any scheduling, as each nurse is working as a contractor, and thus sets their own hours. Of course, nobody is using a shared calendar, so I am coordinating between 1) my doctor’s office, 2) my nurse, and 3) my patient navigator, who also happens to either be away from her desk when I call, or only seems to work two days a week and returns phone calls within two or three days.
How is any of this acceptable? If I returned student emails within three to four business days, there’d be consequences.
I don’t want to reschedule with my nurse because I don’t know when the prior authorization will come through, but if I don’t do this, then she may be booked until God knows when. So, I guess I will make an appointment, crossing my fingers it all works out.
I know I am privileged. I HAVE health insurance, and I have been in remission for a long time. If I was in a flare, this would all be much worse, and I’d probably be fit to be tied, as one of my friends is fond of saying. I also have a job that allows me to spend an hour or so on the phone with the various parties, an hour that I can make up in the evening, or on the weekend. But, hey! No biggie. It’s only my time.
But the fact is- a lot of people out there are in a flare, and in pain, while they navigate a system that is complicated, messy, expensive, and ineffective.
Two hours later: I just received a call! It was a mix-up, and they will try to get my medication out in time for my Monday appointment. I am not holding my breath.
Four hours later:
Monday appointment was cancelled, but I will receive my medication on Tuesday. Now, I only need to re-schedule. Nurse tells me she can squeeze me in on Thursday. Fingers crossed everything goes well!
I had to speak and coordinate with four different entities, because everyone is a subcontractor of someone, a freelancer, everything gets calculated and billed differently, everyone is working different hours of the day, and of course, nobody shares calendars, data, etc. I know that the perfect healthcare system isn’t out there, but this out-of-control turbo-capitalism cannot be it.
The Morbus Crohnicles 