The Wolf-Fox Chronicles: A Healthcare Annoyance in Three (Four) Acts
Forward: A Content note and Why We're here.
TL;DR: Content warning, Cancer, cancer screenings, not repeatedly mentioning my gratitude, and why that’s still probably okay.
For someone that doesn’t have anything actually wrong with them, I’m about to share a fair amount of griping with a large audience. If you’re close to the reality of actually being diagnosed with cancer - first or second hand- this genuinely might not be the right reading material for you. I assure you I’m very grateful that I don’t have cancer, I understand that I’m lucky, but at the same time I’m not going to bend over backwards constantly mentioning either my luck or gratitude. As such, it’s very easy to get annoyed with someone who complains about a situation others might consider an ideal. I understand (and encourage!) not engaging with things that annoy you.
I would offer a flip side, though, before you depart based on my warnings. The whole process I’m about to walk you through managed to be both torturous and vague. The little things that piled up during the course of this mishap - and they are myriad - are the same things that happen to patients during an real diagnosis process. The only thing I didn’t have was the persistent spectrum of terror that comes from being perched for months atop an answerless void. For those of you who have been there, and lost your temper a time or two, the stock counsel is that being enraged by the process was your way of coping with the unknown. You might have been tempted to blame yourself for getting wound up over it.
I’m here to tell you, it wasn’t you. This whole scene is broken. The time spent, the hoops jumped, the unthinking government mandates, the wait weighing on you…it’s a bad system. The extent to which it is broken has a name, called “time toxicity.” Patients making decisions about their end of life care will actually prioritize avoiding interactions with the healthcare system at the expense of prolonged survival. In short, the system itself - the one in charge of healing you - most likely did do things to you that made everything much worse. You’re not alone.
I was lucky. I had no real reason to be frightened. I got to go through it journalistically 99% of the time. Having remained in possession of my wits, I’m able to really poke and prod at the places it tried the soul.
This is not the first encounter I’ve had with the time toxicity phenomenon. In 2011, just after my husband passed away, a close friend of mine was diagnosed with esophageal cancer. I was busy collecting the various bits from my own blown-apart life, but where I could I tried to help out. As these things go he had a bad run of it, but in the beginning he was referred to a world class cancer center, and that’s where all of his treatment happened. He had access to everything one could ask for in terms of bleeding edge clinical practice and research, and at least theoretically all of his providers were empowered to work together. They didn’t. The biggest problem child being the pharmacy benefit manager. His PBM was cheap and pissed about paying for any of it, making it a constant crap shoot as to whether my friend’s prescriptions would be available and covered at the pharmacy located on the very ground floor of his oncologist’s office. Best case scenario, this meant leaving the medication, driving home, and sitting on the phone for an hour to get it paid for. Worst case, it meant having to ask the doctor for another prescription. Middle case, it meant waiting for a prior authorization. None of it would fall under the heading “how you want to spend your last year on earth.”
He had a sense of humor about most of it, and sketched up a voodoo doll that featured all of his various treatment hassles. Right in the groin was Merck-Medco, the villainous PBM. They deserved every stick-pin they got served.
There’s a reason this strikes me as particularly cruel. When things are bad, the big revelations shock us into taking them in their stride. It’s the nibbling little things that get you every time.
Catastrophic diagnosis? Okay.
Remote node? Okay.
Stage 4 situation? Dang.
My drugs aren’t here or there’s one that’s out of formulary? That right there is a bridge too far.
So that’ll be $1500? Pardon me while I go cold thermonuclear in the parking lot.
We build these shining cities of modern medicine, complete with valet parking and a marble waterfall, and it seems a crying shame we’ve built them over foundational flaws such that they crack apart at the actual point of care.
Which brings me to the final point of my forward. Without exception, every care provider I encountered along the way was doing their best with what they had in front of them. From the lab data being vague even though it was required to test the samples, to prior authorizations, to cash vs. payer decisions, I fault none of them for what went on. I appreciate every minute of what they did to wring some coherence out of a weird situation. Good people within a broken system are still good people.
But make no mistake, the system is indeed broken.
Next time: Get in the Queue
I haven’t watched South Park since I lived in Austin, but I recently saw a clip going around that seriously nails this on the head. Let me see if I can find it.