What '48 Hours' Means When We're Dealing With the Specialty Pharmacy

There is a certain kind of patience and determination you sometimes need to manifest when you have to call the specialty pharmacy.

The specialty pharmacy is where you get prescriptions that are not typically kept in stock by a regular pharmacy near you, either because it is a highly regulated substance or because no one else in the country needs that drug. So instead of picking it up, it has to be delivered to you.

Sounds convenient right?

Not even close!

My son has been getting one of his prescriptions (SABRIL, also know as vigabatrin) through the specialty pharmacy. And there’s been more than a few headaches involved in that. Basically once every six months when the refills run out and the prescription is renewed, they always have trouble getting that first batch to us for various incomprehensible reasons. I don’t even know what they all are at this point. (My husband’s the one that’s had to deal with most of it.)

So when I told my husband the pharmacy had called and they didn’t carry our son’s new prescription (tetrabenazine, it’s supposed to help with his uncontrolled movements) and that they had referred us to the specialty pharmacy and would call us within 48 hours and we should have our medicine within a week, he groaned.

That was June 15.

They were nice enough to call me the next week — way more than 48 hours, but who’s counting? This was not a big deal because this new medicine is not crucial even if feeding him is way more difficult than it used to be. Now that we’ve gotten him to go to bed consistently with the melatonin (the movements were making it difficult for him to go to sleep), this prescription didn’t feel nearly as urgent. I somehow missed the actual call, but she left a nice message saying she needed to ask me some questions before she could proceed with filling the prescription.

So I called them back the same day and I had the privilege of speaking with a gentleman who essentially told me he had no record of them calling me at all and he had no idea what they needed as there were no notes in my account. But if he had to guess, it probably had something to do with getting prior authorization for the prescription and I should call my doctor to make sure that happened.

Really? You want me to call my doctor because you might need help getting the prescription approved by insurance. Was it rejected or not? Can’t you run it now and see if it is approved or not? The regular pharmacy can! No?

Then he told me that once they have prior authorization someone will call me within 48 hours to schedule delivery. And I’m still not worried about it. We’re actually experimenting with an alternative remedy to control the movements, and it seems to help quite a bit. When we were on vacation we ran out and the movements exploded in intensity. So now this prescription feels even less urgent.

A week goes by! And around this time I realize the vigabatrin doesn’t have any refills left (Yay!), but I still have a lot of it left so I’m not too worried but decide we should take care of getting a renewed prescription because… well, this is important and… you know, specialty pharmacies.

I call the doctor’s office at this point and a woman who handles all the prescription and pharmacy shenanigans at our neurology clinic is so completely on top of it. She calls in both prescriptions to the insurance and gets them prior authorized all the way through the year 9999 (I’m not even kidding). Then she calls the pharmacy to confirm this with them, and then she calls me and gives me the pharmacy number and the menu numbers I have to press to get to the right person without listening to the never-ending itemized list. (They do it based on what medical condition you have as they have over nine different divisions that handle different types of drugs. I’m sure that has nothing to do with their inefficiency at all.) Then she gives me her cell phone number and insists I call her if I ran into any trouble at all.

So anyway, next phone call. Pharmacy says they have the prescriptions and the prior authorization, but there’s an unexpected delay. And they will call me within 48 hours once they have resolved their system error to schedule delivery.

Another week goes by. I thought hours were a standardized unit of time, but clearly I am wrong.

They call me again on July 6. And yeah, now I know the exact date. I started keeping a log! So she actually tries to schedule a delivery, but the copay for the new prescription was $150, and I don’t exactly get paid during the summer and I thought I was getting a 90-day supply so that amount wouldn’t be too bad, but she said she was only sending a 25-day supply. She was nice enough to offer to apply for copay assistance and promised to call back… wait for it… in 48 hours.

So yeah, that didn’t happen. I’m sure you’re as shocked as I was.

I called them yesterday, July 11, more than a little frustrated, and now I was starting to get worried as I’d been watching the supply dwindle. I asked for an update on the payment assistance and if we could schedule delivery. This particular lady told me the pharmacy would not apply for copayment assistance, I had to do that myself. And when I told her the previous person had said they would apply for it on our behalf, she insisted they never do that. Then she gave me a few numbers I could call to request that help.

I asked if I could pay for the first month now and apply for assistance for future refills. At least that way we’d finally have the prescription and would know how well it worked so we knew if it was worth it. She said sure.

And then she quickly changed her answer to no, explaining there’s a problem with the prescription.

What did I need to do to fix this problem?

“I have to work on it. The prescription is switching systems. I have to work on it and then I’ll call you back.”

(I didn’t bet on it…)

“OK. Can I schedule the other delivery?”

“No, the whole account is locked up. I have to work on it. I will call you back.”

“Is there a number I can call to check up on the progress?”

“Just the main number…”

The second I got off the phone I went over to our little home pharmacy station and count out all the medication we had left. We had 10 days’ worth. Then I started crying, wondering if the bureaucracy and inefficiency of the pharmacy was going to cause us to run out of medicine, wondering if the withdrawal from the seizure meds would break our seizure-free streak. If this lady on the phone knew what it was like to watch your kid have five seizures or more every single day, to go months without him cracking so much as a smile.

My husband was quick to reassure me we could always call Sabril directly and ask for a sample (we had to do this once before when the pharmacy was being annoying). And I figured I would call that helpful woman the next day to ask for support and advice and started outlining the sob story I was planning on telling the next pharmacy phone worker I would talk to if things didn’t get resolved.

I figured I would call them one more time. And this guy was awesome. I called and said I wanted an update on what was wrong with my account so our prescriptions could be delivered.

He told me there was nothing wrong with the account, that they had just sent the prescription to the wrong branch to be filled. I asked him what I needed to do to fix it. He said I didn’t need to do anything, just had to stay on hold while he transferred me to the Sabril branch and they could fix in in just a few minutes. He also told me not to get off the phone until everything was resolved and scheduled. And I didn’t even have to tell him my sob story!

Then I had the absolute privilege of speaking with a woman in the Sabril branch. She asked me to confirm a few things, asked how much we had left, then noted we had received our last shipment in early June and were definitely due for a refill and immediately scheduled it for that week.

Then I asked her about the tetrabenazine. She said it was on hold because someone was still working on assigning a grant to it — you know, to pay for the copayment — but if I wanted I could pay for it now myself and they would ship it too. So they do apply for assistance for you.

So yay! Only took 28 days! Longest 48 hours of my life.

I figure my new strategy anytime they start telling me something that doesn’t make sense or is not specific enough for me to understand the problem, to just hang up and call back until I get someone skilled in clear communication and reading notes in their system.

Follow this journey on A Light of My Life.

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