Navigating a Broken Healthcare System during High Risk Pregnancy After Loss: Prescription Edition

I’m going to start by saying, there are so many ways the current US healthcare system is broken – and I’ve generally been lucky enough to not encounter most flaws personally. I’ve been privileged to have insurance through employers that for the most part has been decent. I know others have a much more difficult time navigating and affording healthcare.

This is just meant to show a couple examples of the broken system, as I’ve recently experienced. Mostly I’m still just floored that this is happening and need to get it out to anyone who will listen. It’s just ridiculous!

Okay, so here goes.

Last week, my prescription for tacrolimus – arguably the most important of my current medications – was nearing time for a refill. I called the specialty pharmacy, which is part of my insurance company. I had been getting this prescription through the specialty pharmacy since I first got the prescription and my local pharmacy got a rejection from my insurance which stated only the specialty pharmacy could fill this prescription. Anyway, they tell me that there is a shortage, and they need to check if there is stock of another manufacturer. They put me on hold for several minutes, and then they come back on and say that it’s good to go, and I’ll get my refill in two days. I confirm delivery address, etc., and everything is set. Later that day, I get the email notification from my HSA card that I’ve been charged the amount for the prescription.

The next day, though, the pharmacist calls me and says bad news, there’s none in stock to refill my prescription. Okay, so why was my card charges when they didn’t even have it? And why did they tell me they had stock, acted like they checked, and didn’t in the first place? I tried to keep my cool, but I’m already irritated and worried I won’t get my refill in time. My baby’s life literally depends on it!

I get them to cancel the order and credit my card. Then they tell me the options are to have them check local pharmacies to see if they have it in stock, or they could call my doctor and change the prescription to a 0.5mg capsule rather than 1 mg capsule because they apparently have that size in stock. I’m taking 3 capsules, twice a day already, so I say let’s check the local pharmacies first.

They are able to confirm that the local Walmart has it in stock and enough to fill my prescription. They transfer my prescription and get everything set up for me. I think everything is handled and I hang up with the insurance company.

About 30 minutes later I get a call from the Walmart pharmacist saying, bad news, that new prescription can’t be filled because your insurance rejected it. You’ve got to be kidding me! They are the ones that transferred the prescription there in the first place! I asked them to fill it anyway, and I will yell at my insurance company. I clarify that I have to pay my deductible before they pay any anyway, so I’m prepared for out-of-pocket if necessary. I’m not going without this medicine for any length of time.

I call up my insurance and go through the loops of the automated system, and after thinking I was finally getting transferred to the right place, I get hung up on. So I call again. Finally I get through and speak with a representative about prescription benefits – calling the same number as the specialty pharmacy I just spoke with. Just to really clarify this is the same company, insurance and specialty pharmacy. I explain everything I just went through, and she has no words for a solid 10 seconds at least. Then she slowly says okay, let me see if I can do an exception.

She pushes through an exception and tells me it’s all set up. I thank her and ask if I will need to call in every month to get the exception. She says yes, and that hopefully they have it back in stock so it wouldn’t be necessary to go through a different pharmacy. I say okay, we’ll see.

Cue Walmart calling. They got the insurance approval and just wanted to let me know. Then they say what the total will be.

Let me back up and let y’all know that my insurance’s specialty pharmacy, who insurance has forced me to go through, has been charging me $409/ month.

Walmart says the refill will cost – wait for it –

$90!

I’m shocked as I hang up. I tell my husband I don’t know if insurance approved a full refill because Walmart said it would only cost $90. Why wouldn’t have someone mentioned that they weren’t giving me the full month if that were the case? And if it is the full month, are you kidding me?!

Sure enough, I go to pick it up later that day and it was a FULL MONTH SUPPLY FOR LESS THAN ONE FOURTH THE COST!

What the actual hell?

So I guess I will be fighting every month now to get my prescription through Walmart. If insurance refuses, they better price match because the difference is insane!

A few days later, my labs came back indicating I needed to up my dose, so I told the doctor’s office to send it to Walmart this time. Walmart called and asked if I could just use my recent refill at the higher dose before they filled the new one, and I agreed, but mentioned my worry about the shortage. He understood and went ahead and ordered enough to cover my next refill and said it would be on hold for me.

Stay tuned for the next act in this saga when I go to refill this prescription in a couple weeks!

Shifting gears just a bit, I had labs come back this week indicating inflammation in my body has increased, so I had to up my prednisolone. The prescription was sent to Walmart, I assume because the tacrolimus had been sent to Walmart. Well again, this pharmacist called and asked if I was expecting a new prescription. I said, yes, the prednisolone for 15mg. He said “Yeah, okay, well it’s pretty rare, so I had to order it. Initially it was coming up as $1,500, though.” Say whaaaat?! I’ve been getting the 10mg for $10/ month through a different local pharmacy! He quickly said that he ran it through insurance and it came back as $10, so that’s why he went ahead and ordered it. He figured $10 was okay.

So, basically, moral of this little side story is if you don’t have insurance, these tiny pills would cost you $16.66 a pop! How is this okay?! They are smaller than a baby aspirin. How are people who can’t afford insurance supposed to be able to afford medicine when they need it? How can pharmaceutical companies possibly charge that much for something so small?! It’s just a steroid, similar to prednisone. I’m not sure why he said it’s rare, perhaps just that this pharmacy doesn’t see it a lot, so they don’t keep it in stock?

So on one hand, my insurance company is basically forcing me to pay them $409/month for one medicine when it should only cost me $90. On the other hand, having this insurance allows me to get a much needed medication for 0.66% of the price it would otherwise cost. I’m still processing the insanity of this system.

There has got to be healthcare reform. Meaningful healthcare reform. If this is the best we can do, I don’t see how we can possibly claim to be the best country in the world.

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