By “This” I mean the amount of time I devote to handling the administrative aspects of being a chronically ill patient. Take, for example, the number of hours it has taken to try to see this Rheumatologist in Albuquerque. I’ve spent at least 4 hours total on the phone either with the doctor’s office, my insurance, and my PCP and his office. I’ve stepped away from my office to answer several calls as related to this issue and my attempts to find someone who will see and maybe treat me. That’s roughly the same amount of hours I pay my studio assistant per week to help me streamline my studio and art processes.
It also turns out that most of that effort was entirely unnecessary, as only this had to happen:
Insurance “Patient Advocate” (try not to choke while laughing at that title): Do you live in the four corners area?
Me: No. I live in a county outside that area.
Insurance PA: Then because you have less access to care, this doctor is in network for you.
Me: So we didn’t need to file with the prior authorization side and send tons of clinical information to you and get denied and re-file and wait until it was almost too late to book a hotel and find a house/child sitter?
Insurance PA: Er, right.
The real kicker is that they asked me those very same questions during the very first phone call over a month ago. I guess geography changes? OH, wait, it doesn’t. Huh.
Now I must spend time arranging a sitter and introducing her to the child/dog/cat. I have to assemble an entire notebook of medical documentation, test results, clinical findings, etc to take with me. I figure if I got paid for all that I’d have made a couple hundred bucks already, you know?
Also, there’s the amount of time and energy it costs me to arrange to attend an appointment. Last Thursday I was scheduled to see a cardiologist at 3:20 in the afternoon. Before I left the house I had to locate my most current echo and blood test results. I had to arrange with my supervisor and my staff to leave early, and make sure that I had planned activities for my class that my senior Work Study could supervise. Then, the doctor’s office called that morning and cancelled the appointment due to the doctor having “an emergency.” I will lather, rinse and repeat the above on Tuesday, when I have an appointment with her at 4:00 pm.
There’s also the amount of time I spend researching my condition and co-morbidities and random symptoms since right now, I don’t have a team to help me manage my care. Dear Dr Google, why do you think I woke up at 12:45 this morning with gnawing stomach again? What should I do about that? What if I feel like it will take one more thing to break this camel’s back in 17 pieces?
If I did get paid for all this work, I think it would work out that I wouldn’t have to pay my insurance for another thing, since I’m mostly doing their jobs for them. It’s as if a patient becomes their own full time job if they want to get even barely adequate care. Instead, I do all the work of the case management aspect of my health care, plus my own full time job–and all that while suffering daily pain and a myriad of unexplained or untreated symptoms and conditions. That seems fair, right?