It bends

arc, by electricnude on Flickr, licensed under Creative Commons

I started composing this post a couple weeks ago. This is starting to become a theme here, I think. I started writing but felt that my tale lacked a narrative arc. It lacked closure. I am not sure I have it quite yet, but I’ll know by the end of writing this. I don’t know where this piece will go, because I’m writing it a couple of weeks removed from the inciting event, and in the grip of rage over the [latest] travesty that took place on Capitol Hill tonight.

Sometimes it isn’t until I’m right in the middle of a reenactment of something unpleasant that I realize what’s going on. Since my eye condition (itself an unpleasant thing that I’ve cycled through many times since 2015) persists, so does the continued need for multiple prescription eye drops — or as I think of them, the gold leaf-encrusted artisanal doughnut of the prescription drug universe.

Almost five years ago, I was in a pricing bind with some eye drops, the resolution of which was epic and which I recounted in granular detail here, because I was on dexamethasone at the time.

A couple Fridays ago, after I’d already been to see the newer Dr H (glaucoma specialist, not to be confused with Dr H retina specialist, same office), I came home and realized that the drop in the green bottle with the purple cap, which had been running low for days, was basically empty.

The doctor prescribes these, and then you are basically on your own figuring out how to pay for these. What would you pay for the one on the upper left?

So I call in a refill to the pharmacy near my house, checking the price I paid for the 5 mL bottle last time: $40. I get a text in response:

Xxxxxx Xxxxxx Rx: You have 1 prescription(s) ready for pickup. Estimated cost is $140.00

I pick up the phone immediately to call them. The pharmacist checks my insurance and says, “Yep, that’s the price.” I protest that I’d paid a hundred dollars less the last time. She can do nothing further for me.

Remember, it’s Friday afternoon, it’s getting later, and offices will start to close soon. I should be getting dinner ready but instead I’m caught in a loop of music on hold with my company. I notice the music on hold has changed in the past five years, from a single jazz riff endlessly repeating, to classical piano. At one point I am even hearing the Mozart sonata Young A is currently working on. Except the sound is distorted and unlistenable, almost like a dental drill to the ears.

After a lifetime, a well-meaning guy comes on the phone, and after putting me on additional endless hold, he comes back and tells me that yes, my copay is $140 for this tiny bottle… and that that is the price I paid last time.

I want to scream. I have J look up our credit card statement from July so I can prove to myself I’m not crazy. I paid $40 for the drops in July, and my insurance swears I paid $140. There is no talking them out of this crazy notion.

In the meantime, it is past 5 p.m. and the message I leave on the voicemail at Dr H (glaucoma specialist)’s office, asking with despair in my voice if I really need to stay on these drops, will now go unanswered until Monday.

I sob at the dinner table that night, and drink a lot of wine. I feel very sure that my life is worthless to the forces that drive healthcare, and I can’t even count on my insurance company to agree on a simple fact.

Over the weekend, I learn that when you have a tiny bottle of eye drops that cost a fortune, and that bottle seems to be empty, you can manipulate it in a particular way to extract its final precious drops. I use the drops six more times between Friday night and Monday morning, each time producing enough from the bottle to make a decent sized dose.

Monday morning I call the specialty pharmacy that recently helped me get the other super expensive eye drops which have no generic equivalent — they had sold those to me the week before for $50, and I was glad to have them. They run my insurance and add a coupon from the manufacturer and after I am on a short hold, they come back to inform me that they can sell these drops to me for $15. I am in disbelief and say, “One five?!”

The only thing is: I’d been over to that pharmacy the week before to pick up the other drops. They’re a tiny office in an office building in an office park wasteland. When I’d been to the office to pick up my drops, I noticed none of the women who worked there wore masks (all the men did). I wasn’t happy about this but decided to hold my tongue and get out as quickly as possible.

This time, I’d have to go back knowing their mask protocols were not strong, and knowing that the woman who went to bat for me on the phone and got me the right drug price was one of the maskless people.

I got a call back from Dr H’s office, and they informed me that the drop I’d been trying to get this time around came in a cheaper generic version, and they could prescribe that instead. I opted to pick up the drug that was the same I’d been using, at the suddenly bargain price of $15 (and possible covid exposure).

I felt triumphant for a moment, as one does when one prevails against a soulless system. But that triumph doesn’t last. There is always something to drag you back to the reality, which is that we shouldn’t have to be fighting these companies in the first place. I remember having eye problems in Italy and walking into the one pharmacy in town open on a Sunday and buying a bottle of eye drops over the counter for about eight bucks: no prescription, no outrageous copay.

In Brooklyn, my trusted ophthalmologist, Dr D, always turned his cluttered office upside down looking for samples when I needed eye drops. He didn’t always have them, but he’d always check. I miss Dr D and his ad hoc solutions to my eye problems, problems which are rare enough that they seem a bit ad hoc, too.

The care my eyes receive now is highly specialized and eminently qualified, but sterile (sterility being not entirely undesirable these days, but from a medical perspective, not an emotional one). I have simple needs: I have had the same pair of glasses since 2012 which I would like to update; and I can barely see the computer to work anymore, because I likely need reading glasses or progressive lenses.

Here we are. I think this was my destination all along: a veneer of sterile professionalism applied to a soulless enterprise where lies are passed off as truth. This passes for Healthcare. Switch contexts, and this passes for Government, for Justice. There was a crime against Democracy committed in the Senate tonight, the remedy is uncertain at best (with just over a week to go), and there will be no lower-priced generic. I sure hope the people who save us keep wearing their masks.

BRAF mutation — know yours!

I was so honored to be asked by the Melanoma Research Foundation and Novartis to write about the BRAF mutation of my melanoma, and just how knowing it made all the difference in my getting the right care in record time, which made a crucial difference in my survival. Please read my essay and share to anyone who might find it helpful!

What’s going on here these days: I’m anxious to be rid of the Superspreader in Chief and all of his hangers-on; anxious about our elections being free, fair, and safe; and anxious about the transition period. Part of me wants to be suspended in a sensory deprivation tank until January 21. However, I have scans this coming Monday, adding my usual scanxiety to the general anxiety. As always, I’ll be sure to post scan results here when I have them. I’m so glad to have you following along.

UPDATE: Scans all fine! Sorry for the delay in posting my results. I forget that not everyone is intravenously connected to Facebook. (I’d love to sever that connection myself.)