Last week I wrote about feeling gaslighted by the system. More recently I’m feeling a fresh wave of rage at the difficulty of trying to get meaningful care. A message to my PCP’s office about symptoms getting worse was returned with the helpful message, Have you considered that you might have COVID? We think you should take a COVID test. NO THIS IS NOTHING LIKE COVID AND IF ANYONE WAS PAYING ANY FUCKING ATTENTION AT ALL YOU WOULD BE AWARE OF THAT. Seriously. I was (perhaps unreasonably, but here we are) livid.

But I’m not really in the mood to write about being livid today. Part of why I’m doing this is to try to connect my everyday experience, which is so hard to ignore right now, to something bigger than myself. So let’s talk about something that I have had the great good fortune not to deal with that is a huge part of many cancer patients’ experience: massive bills.

This is the cost of my medical care to date. Something around $500 of the big figure is for a couple of routine pre-cancer appointments. The rest is from the thirteen months since I first found a lump.

As you can see, my coverage is incredibly good. We spent maybe another $2000 on medical stuff not included here, but our out-of-pocket costs have been insanely low. Honestly, I feel guilty for not paying more, knowing how many people’s lives are financially ruined by cancer or other serious illness—even though I believe medical care should be socialized, and this burden should be collectively, not individually, shouldered.

Now, keep in mind these totals are based on what providers bill, not what insurance pays. The latter figure is not nicely summed up in one place, but appears to be a pretty large fraction of the total, maybe 70-80%. If you want to break it down, perhaps $25,000 of this is from the mastectomy, $80,000 from four rounds of chemo (the cost primarily the drugs themselves), $85,000 from 20 rounds of radiation, and $55,000 from thyroid surgery. You will see that still leaves another $75,000 or so of miscellany, which includes a couple of biopsies ($15k or so), and another $12k or for the endocrine therapy that started in July. God knows what the other $48,000 is—a rounding error.

This is all, to put it politely, nuts. If I had to actually pay this, or even to work hard to ensure that my insurance actually pays what it’s supposed to, I’d have a lot to write about. But I don’t. So I’m going to hone in on something different this week: the cost of drugs.

I’m okay with paying a bunch of money to the insanely skilled breast surgeon, or to the nurses who whip out the big needle every month. I’m sure that part of the system is broken, too, but it feels less egregious.

But the drugs. My god, the drugs. They are insanely expensive. A lot of this is because of maneuverings to keep them insanely expensive. And the whole system is built around creating and administering them—in the absence of providing care that involves, you know, care.

I am going to explore, over a couple of posts, a couple of these specific drugs and why they cost so much—starting with the very expensive chemo support drug, Neulasta, and the very expensive ovarian suppression injection, Zoladex. This all gets very complicated very fast, and I don’t know how far I will get with it. But this is therapy. So I’m willing to give it a go.

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