A new asthma medication has changed my life. I haven’t needed my resue inhaler in months, and I didn’t realize how much easier it could be to play the flute. But navigating the insurance rules for what’s covered and what isn’t has me reeling.

Background

I take one inhalation per day, and there are 30 doses in an inhaler. This means I need one inhaler per month. I wish I could get a refill, and not have to throw away the plastic case, but this is the world I live in.

After around six weeks, I’ve adjusted to the drug. I take it in the evening to avoid hoarseness during the day. I’m at a steady state now, and I adore all this low-effort breathing.

the first inhaler cost $10.

the second inhaler cost $80. It had the same lot number as the first one.

The pharmacy couldn’t explain why the second inhaler cost 800% as much as the first. I called the insurance company, and they said the first inhaler had been a generic, so I should switch my prescription to their mail-order service and they’d be able to get me the cheaper generic every time.

This is a generic inhaler. I never recieved one of these, and didn't realize it had a different sticker until I found the photo for this post.

I did some research. Something called an “authorized generic”¹ does exist: it’s apparently the same drug, in the same packaging, by the same manufacturer. I had no reason to doubt this story about being given a generic. I asked my provider to resubmit the prescription to their mail-order service, and to specifically request a generic.

The Price is Revealed

This morning, I logged into the insurance company’s mail-order prescription site. I’d been billed $160 for three inhalers. This is the second time that I’ve been billed eight times what I was expecting.

The doctor had mentioned they like to send you 3 for the price of 2, so I assume they’re still billing me $80 per inhaler. That’s an improvement, but it’s not the $10 inhaler they promised.

The company web site also claims I could get an authorized generic “Fluticasone Furoate/Vilanterol Ellipta” at $20 for a 90-day supply (3 inhalers), but that I’m not eligible because I already have a 90-day supply on the way. In addition, the site said I can get this drug at my local pharmacy for $10.

Tech Support

I wanted to see if I could get out of this unexpected $160 fee. Ideally, I could get this $20 generic instead; after all, I specifically asked my provider to request the generic in the prescription. It was time to interact with somebody, so I opened the web site’s chat window.

I try to be cordial and friendly when I’m talking to support people. Typically they’re just doing their best with a big unwieldy system, and may not completely understand what’s happening, even though they’re representing the whole company. So I did my best to be clear and understanding for 2½ hours, as I was passed between five people.

First Person

The first person told me I can get a drug called “Wexela” at $10 for a 30-day inhaler, or $20 for three of them. This is a slightly different drug: Fluticasone / Salmeterol, the generic version of the branded drug “Advair”. It’s is supposed to be taken twice a day instead of the once a day I have currently. This would be the low-effort way to get the drug I need at a low cost, but I would probably lose my voice, like I have both times I used Advair in the past.

Since this is a different drug with different dosage, I would need a different prescription before I could get it. It sounded like I needed to cancel the $160 90-day shipment going out the door and talk to my provider. Before I authorized stopping the shipment, I asked why I couldn’t get the authorized generic the web site said I could get, and they transfered me to a pharmacist.

The Pharmacist

The pharmacist was able to check how much the drug would cost me in November, when my 90-day supply runs out. The answer: “this isn’t covered by this insurance plan”. They apologized for the incorrect estimate I was seeing on the web site. They must have access to more accurate information.

They had no idea how I’d gotten the drug for $10 initially. It seemed to them that the $10 price was a mistake.

I said I’d like to cancel the $160 order, and was told it was too late, it had already shipped. I was transferred to a supervisor to see if I could send it back for a refund.

I need to stop here and note that nobody ever asked if they should fill this. We may have authorized automatically filling prescriptions when we signed up for the mail-order service, or there may be some other reason this prescription was filled automatically. But it was beginning to feel like a big oppressive system working its hardest to charge me $160 for $20 worth of medicine.

Third person

The third person took a while to read back over everything, and eventually came back offering me a one-time $130 credit, and said they’d found someplace I could get the drug for $10 a month.

As I usually do, I repeated my understanding of what they were saying. They confirmed that I understood correctly. So I said yes, I would appreciate the $130 credit for the three-month supply already in the mail, and I would love to know where I could get it for $10 a month.

The web site then killed the chat, logged me out, and told me I could close the tab now.

Fourth person

I logged back in and opened another chat. I explained where I had left off, and the fourth person quickly escalated to a supervisor.

Fifth person

The supervisor said they’d get back to me on whether I could get that credit I was offered. They also said they’d get back to me on whether I could send the drugs back. I shouldn’t open the package when it arrived.

They confirmed that if I didn’t hear back before I ran out of medicine, I should call them again.

Where Things Stand

This took about 2½ hours, and I feel like my polite approach actually sped things up quite a bit. I wish I had not needed to start over when the web site logged me out; I could have been done in just under 2 hours that way.

I am not expecting to actually hear back from them before I run out of medicine. While this company has not yet acted in a way to make me distrust them, other interactions with support at large companies has. It’s not difficult to imagine the supervisors have quotas: a number of cases that must be resolved per week. The first one could have invented the credit to end the interaction quickly, and the second one could have invented the review for the same purpose. The people doing these jobs have metrics they must meet, and it would be typical of these types of jobs if the number of cases closed per week is more important to them getting paid than helping customers.

Because I got no notification that any review had been opened, I sent a follow-up message regarding this review, explaining (as I usually do) my understanding of the situation, and asking if, in the future, there’s any reference number I could provide to this in-progress review. I’m hoping a different person will read my message and let me know there is no such thing, so I can start this 2½ hour process again before I run out of medicine.

When the medicine arrives in the mail, I can either pay $160 for it, or spend more time with support trying to send it back for a refund, so I can get the $20 medicine they said I would get if I followed the instructions they gave when I called them initially.

This is an awful situation for someone who can’t afford this kind of rigamarole. $20 every 3 months works out to $80 a year; $160 every 3 months works out to $640 a year. That’s eight times the price. And people with low-paying jobs typically don’t have 2½ hours to spend with an insurance company trying to figure out how to get $160 back down to the $20 that was offered.

My narrative

Here’s what I’ve confirmed is real:

• I paid $10 for a Breo Ellipta inhaler in June.
• The Breo Ellipta inhaler now costs me $80 for a 30-day supply (one inhaler).
• The mail-order drug company will give me 90-day supply of Breo Ellipta (3 inhalers) for the price of 2 inhalers.
• A 90-day supply (three inhalers) of “Wexela” would cost me $20.
• “Wexela” is a different drug that has caused me to lose my voice in the past.
• I have a 90-day supply of something coming in the mail.
• I was billed $160 on the same day the 90-day supply began processing.

Here’s what appears to be fiction:

• My insurance allows me to buy an authorized generic inhaler for $10.
• My local pharmacy will sell me a branded inhaler for $10.

Based on what I know, there were a number of failures here.

The initial failures

This happened when I went to get my prescription refilled at the local pharmacy.

• Whatever caused the $10 price didn’t happen when I went to fill the second time
• The person at my local pharmacy had no idea how the $10 price happened, and thought the insurance company would know

Round 2 of failures

These happened when I called the insurance company.

• The insurance company also has no idea how prices are set at my local pharmacy
• Alice, the teir 1 support person at the insurance company, misrepresented a guess as fact, telling me the first fill was a generic
• I imagined a story where a generic would be filled at $10 where the brand name was $80
• I shouldn’t have suggested to Alice that the generic situation would be handled better if I switched the prescription to their in-house mail-order service: she agreed with me, without knowing if it was actually true
• My healthcare provider believed my constructed story about the generic

Round 3 of failures

These all happened today.

• For some reason, the insurance company still says the local pharmacy will sell the drug for $10, even though the pharmacy has informed me this is false, and everywhere else (including the local pharmacy) sells it for $80
• The various support people I talked to this morning may have been under pressure to move on to the next support case, resulting in them inventing solutions (refund, review process) they thought would placate me

Summary

In computing we would call this a “federated” system, where everything is its own island and there’s a complex patchwork to try and get it all talking back and forth. It falls down a lot.

In this situation, a reasonable patient might think there’s some golden ring ($10 medicine) that somebody somewhere is keeping away from them. Really it’s just that the system failed in a way that presents the illusion of the ring. Having actually obtained it once would work against anybody buying any explanation other than “this is possible and you just need to figure out how to repeat it”.

Since we can afford it, I’ll probably just eat the cost when the drug arrives, even if I don’t get the credit or opportunity to send it back for a refund. But, man, I can really feel for people scraping to make ends meet. I didn’t authorize this $160 charge, it just showed up, after I was promised it would be $20.

I could forgive someone for mistaking the multiple layers of failures for a grand conspiracy. You shouldn’t need 30 years experience with complex systems to make sense of this. The insurance company appears to be trying to make this easier to understand, by showing me what prices are available, but they’re getting bad information from the local pharmacy.

Lastly, I’m not even sure any of what I just wrote is true. I’ve formulated a narrative around the few clues I have, and it makes sense to me, but I could be completely wrong. I’ll never know.