Would You like to Hold?

Insulin, Labubus, and the Scripts we Cannot Not Follow

Content warning: this is a rant and it is long and tortuous and quite similar to an earlier post about the obscene and quotidian difficulty I face in getting ahold of the life-sustaining insulin that I need as a Type 1 diabetic. But if you are head-bangingly frustrated by the Kafkaesque paths that the insurance-pharmaceutical companies force us to tread as we attempt to avail ourselves of the world-class medical care allegedly at our disposal, for which the fortunate among us—including myself—pay exorbitant insurance premiums, you might enjoy following along.

Set Up

Five days ago, I ordered more insulin from Express Scripts—the on-line pharmacy that I use to save time and money. They mail the insulin to me so I don’t need to go to the store to pick it up. Also, they have a deal with my insurance company (BCBS) so I can get a three month supply with a cheaper co-pay.

This is the insulin that I need to inject daily in order to survive given that my pancreas has quit on me. And this is the insurance that my employer takes $911.14 per month out of my paycheck for to cover my share of the premium.

But as the insulin disappeared from my last remaining vial, it occurred to me that I had received neither the new insulin nor even a shipping notice via text saying the insulin was en route, so I checked on line and saw that my insulin order was marked with a “delay advisory.”

Action

Call #1: (12 min.) Express Scripts: I need insulin sooner rather than later, so I call to find out how long the delay will be and am told that it will be interminable: as in, not a delay but never because the company that makes the Insulin Aspart I need has stopped making it.

I do a little sleuthing online while I am on trying to make sense of what the Express Scripts guy is saying and see that Novo Nordisk has stopped making the generic Insulin Aspart because they can sell it for more under the brand name Novolog. Which my insurance does not cover.

Would I like a resale asks the Express Scripts call center guy? A resale? Yes a re-sale.

I am confused; my hearing is not great and the call center guy’s accent is strong. He says it louder a few more times. Can you please spell that I finally ask. R-E-S-I-L. Resil. Oh: refill, I realize. No. I don’t need a refill of the drug that I cannot get; I need to know what insulin I can obtain instead.

I am told that the substitute for Insulin Aspart is Merilog. How do you spell that?

M-E-R-I-L-O-G -- “G as in judge.”

Do you mean “J as in Judge” I ask?

No: “G as in judge.”

I try again: “G as Green or J as in Jump?:

“G as in Green” he affirms.

OK—and here I am admittedly a bit pedantic and embark on a little spelling instruction. I know I am speaking to a non-native English speaker, who is probably in a call center on another continent and cheerfully reading the script he has been given with no spelling lessons. I know that this is not his fault and that he probably makes piss poor wages and has a mother with COPD and a brother with special needs and just wants to pay his rent on time. But still. Judge is not spelled with a G. And I need insulin.

He is being paid to stick to the script, not to understand it. He has been bot-ified by Express Scripts just as I have been commodified as an insulin-needing revenue source. There is not a lot of room for going off script. I do not bring up the fact that it is ironic that he has to stick to a script and I can’t get my script filled.

[The word “prescription” is from the Latin praescriptio, meaning “a writing before, order, or direction.” I need the medical prescription—the writing of the directions before I get the meds—and he needs the writing of his speech before it comes out of his mouth. We are following our directions. But the scripts are mismatched—not connecting as the architects of this efficiency have programmed it. The scripts are broken and because the system has cut away all the “waste”—the time for human interaction that might occur in this conversation—we are both bereft of any way to fix the mismatch between his customer service script and my need for a medical script.]

The polite representative is impervious to my spelling instruction. He is checking to see if Novolog (made by Novo Nordisk) is covered by my formulary (the list of drugs covered by my insurance plan). No. And Humalog (Eli Lily), no. Those are the two the insurance company usually plays footsy with over the past five years but apparently the game has changed.

Sanofi has entered the fray with a new generic named Merilog. I will need to call my doctor to get a new prescription for Merilog.

He returns to his script and cheerfully, robotically, asks: Do I have a one week supply of my medication? No.

Would I like to hold for a pharmacist who will discuss the impact of not having the medication?

No. I am more than aware of the impact. Unless I avoid carbohydrates entirely I will enter into a state of ketoacidosis and eventually die.

Will I please hold for a brief survey? No.

Call #2 (4 min.) Doctor’s Office: I call my doctor: they say that I need to call my insurance company to see which kind of insulin they now cover, given that Insulin Aspart is off the table. Because, they explain, there is no use sending a new script until they know which one will be covered. I clock the fact that my doctor is not in charge of deciding what medication I take; rather, the insurance company is. To be clear, when I say “my doctor” I am not really speaking to my doctor; I am speaking to a lesser paid individual (for efficiency’s sake) who handles prescription requests and will reach out to the doctor if needed. I’m not allowed to do that part—talk to my doctor. If I want to do that, I will need to wait another six months for an appointment.

Even indirectly, though, the person doing the prescribing here is not my doctor or her employee: my doctor’s script is being prewritten by the insurance company whose script is being prewritten by the deal they cut with the pharmaceutical company they bartered with to secure top billing on the formulary. This seems to me not like medical care but rather like exploitation of those with medical needs in the service of CEO and shareholder profits.

Call #3: (2 min.): BCBS: I call my insurance company: phone tree only, but it ends up that a robot tells me that I need to call Express Scripts. I thought that Express Scripts was my pharmacy, but it turns out that they are my “Pharmacy Benefit Manager” – serving de facto as both the arbiter of my insurance formulary (determining which drugs are covered by my insurance) and my pharmacy—so they are in charge of my medication and my insurance and my money. Efficient!

Call #4: (35 min.) Express Scripts: I tell my sad tale to a much more human sounding bot-ified phone-answerer. I’m getting better at telling it and she understands me with relative speed; the language barrier is less acute that with the previous bot-person.

This time, instead of telling me I need Merilog, she asks me to hold for a pharmacist who will discuss the available alternatives to Insulin Aspart. I hold. And hold.

She comes back after a while to say she has spoken to a pharmacist who says there are two alternatives: Novolog and Humalog. She confirms that my insurance does not cover either. What about Merilog I ask? She has never heard of it (having clearly not spoken to the earlier bot-person who insisted on it); I spell it for her: M-E-R-I-L-O-G: she looks it up and says it is covered. (I like that I am now coaching the bot-people on their job. I wonder who failed to follow their script in this case. My money is on the Judge-with-a-G guy.)

How does it compare to using Insulin Aspart, from the perspective of blood sugar regulation (as opposed to pharmaceutical company profits) I ask? She asks me to hold for a pharmacist. Eventually a very cheery pharmacist comes on and we go through it all again up to the part where I ask how Merilog affects the person using it. He doesn’t really know but thinks it is probably fine. It’s biologically identical. Hmm.

Do I have a one week supply of my medication asks the pharmacist who also has a call-center script in front of him if not a firm grasp of the medical script issues. No I do not. That’s why I need insulin.

Would I like to discuss the impact of not having the medication? No I would not like to.

Will I please hold for a brief survey? No.

Call #5: (8 min) Doctor’s Office: I call my doctor to get the new script. The phone rings for 8 minutes with no answer so I hang up.

Meanwhile, I go on the CVS app on my phone and order a refill of the Insulin Aspart because they also have my previous script and I figure maybe they have some on hand—stuck in the back of the fridge and I might as well try.

Call #6: (13 min.) CVS Medford: The app says it is processing for a good 30 minutes so I decide to call CVS to see if they have any. I know there is a phone tree to get to an actual pharmacist but I steel myself for it. I eventually get to a pharmacist, and she is very helpful and sympathetic as I unfold the tale of my insulin quest. She seems quite aware that needing insulin is a real thing for diabetics, which I appreciate.

But they do not have any Inuslin Aspart.

I am now starting to get not just frustrated but also worried. I calculate that Express Scripts will take a week to get the insulin mailed to me. Although I would have been fine had they filled my script, or alerted me (back in January when the company stopped making it) that they could not fill it, I can’t wait for the time it will take to get a new script from my doctor sent to them plus the time of processing and mailing, so even if I do switch to Merilog, I’m going to need to get it from a local pharmacy.

So I ask the CVS pharmacist: if they don’t have Insulin Aspart, do they have any Merilog with a G?

CVS does not carry Merilog: they only carry Kristy. But they don’t have any Kristy anyway, because it is evidently in high demand since Novo Nordisk quit with the Insulin Aspart, and they don’t know when they will get it.

[Why do these names sounds like tweenage girls on ‘70s sitcoms? What happened to putting lots of x and y and vs into the names of medications to make them sound more serious? Have we moved to a different genre now with insulin? Has diabetes become fun? Where did I see the game that involves identifying each name as either that of a Pokemon character or a prescription drug?]

Pokemon or Prescription?

I ask if there are any CVS’s around that might still have Insulin Aspart, from back in the days when insulin names sounded like insulin names. Yes—there are two within striking distance that indicate in the system that they have it. But I should call ahead because the system is not always trustworthy.

Call #7: (5 min.) CVS Salem St. (in Target): They have the insulin but only five vials and my script is for six vials, so maybe I should call the Melrose CVS because they might have all six—a three month supply. I’m a little anxious about the Strait of Hormuz and what that means for shipping anything anywhere in the weeks and months ahead, so I think I should get as much insulin as possible. I decide to call Melrose in search of six vials.

Call #8: (5 min.) CVS Melrose: They have zero vials.

Call #9: (11 min.) CVS Salem St. (in Target): I try to go ahead and get the five vials since I can’t get six from Melrose but when the very kind soft spoken pharmacist tries to put through the order for me, it turns out that the system says no more refills allowed for me until July. She spends time digging through my electronic records and reports that I have just filled a three month prescription five days ago. That would be the one at Express Scripts that they were unable to fill, but evidently have left it in “the system” as fulfilled to forestall any attempt by me to get the insulin elsewhere. The pharmacist recommends that I call Express Scripts and ask them to correct the record.

Call # 10: (12 min.) Express Scripts: I ask the woman with a bouncy but medium hard to understand accent to change the incorrect record to reflect the fact that I did not receive any insulin. She would like to place a refill order for me. No, I explain, just cancel the order because they do not make that insulin any more. (I have skipped that part of the story because, well… because.) She says it is already cancelled. Cancelled like CVS-can-see-it-will-be-cancelled or cancelled like they are not going to send it to me? We go through this distinction several times. Until I have made my case that I need it CVS-visible-cancelled and she assures me that it is.

Would you like to hold for a pharmacist who will tell you about the impact of not taking your medication?

No. The impact is that I will die. I am aware of this. That is why I am seeking more insulin. I hang up. A little rudely. Before they have a chance to ask me to hold to take a brief survey.

Call # 11: (5 min.) CVS Salem St. (in Target): The pharmacist and I are now on familiar terms: Oh, hi Elizabeth she says. Let’s try this again. This time the order goes through but it says that insurance limits me to a one month supply, which is 2 vials. Which will be a $65 co-pay. I can only get the three month supply from Express Scripts ($110 co-pay) because they have a special deal with my insurance company. (I kind of knew that already but a girl can hope that sometimes the system fails in her favor.) I can pick up the two vials of insulin at the CVS today: but not until later because it is almost 1:30 and the pharmacy is closed for lunch. Which I don’t begrudge them because I believe people should have time to eat without being on the telephone and the computer at the same time. I cannot get there after lunch (my morning having been unexpectedly occupied on the phone), but I plan to go tomorrow.

Resolution?

Call #12: (9 min.) Doctor’s Office: I have secured the promise of enough insulin for the near term from the CVS on Salem St. (in Target). I feel like a desperate parent who has found the LaBuBu that their child demands for their fifth birthday. Except this is medication, not a toy. But it’s all in the same realm now: LaBuBus, Merilog, and Kristy.

Despite my promised victory in the short term, longer term I will still need something to replace the soon-to-vanish Insulin Aspart. I explain to my doctor (who is not my doctor but the prescription person in my doctor’s office) that I need a new script for Merilog. He says that he will ask my doctor if she is willing to prescribe Merilog. She might not be in which case we would go to Novlog and request an insurance company override, which will allow me to get the same drug I was on before but at a higher price because the brand name version of it is not on my insurance company formulary. How will I know what the doctor says? Someone will call me, he says. I mention that I do not love that the insurance company now prescribes my drugs. “Yeah,” he says. “It’s been that way for a few years now. I’ll put a rush on this.”

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Stay tuned for tomorrow’s episode, in which I go to Salem St. CVS (in Target) to see if I can place my hands, physically for real, on two vials of Insulin Aspart!

Day One Summary Report:

• Minutes spent on the telephone: 121

• Times I have repeated the day, month, and year of my birth on these phone calls: 22.

• Vials of insulin I have been able to secure the promise of having access to: 2

• Mg. per liter my blood sugar increased over the course of these interactions: 50

• Times that my insurance company or prescription benefit manager or doctor informed me that the insulin I rely on to survive is no longer being produced as of December 2025: 0

• Units of insulin I need per day to live: avg. 60.

• LaBuBus I own: 0

• Vials of Merilog I have access to: 0