High Liver Enzymes on Interferon: Why I Had to Stop Treatment – Ep. 33 – The Fine, But Not Fine Podcast

When you treat a cancer that can't be cured, you don't just manage the disease, you manage what the treatment does to the rest of you. My liver numbers climbed high enough that I had to come off my medication entirely. This episode is the cascade that followed: the referral, months of waiting, vials of blood, a FibroScan, and the relief of an answer.

1. High Liver Enzymes on Interferon: Why I Had to Stop Treatment – Ep. 33 13:25
2. 150 Appointments: What Rare Disease Treatment Actually Costs – Ep. 32 10:01
3. Two Days in the Halls of Power – Ep. 31 20:41
4. Inside Rare Disease Week: Taking Advocacy to Capitol Hill (Part 2), Ep. 30 08:06
5. Inside Rare Disease Week: A Patient Advocate on Capitol Hill (Part 1), Ep. 29 09:26

You look fine, but you’re not fine. And that’s exactly what we’re here to talk about. Welcome to Fine, But Not Fine, the podcast about navigating rare disease, health care battles, and the messy reality of chronic illness. I’m Kelly, Paul, and I’ve been living with Mycosis Fungoides since 2015.This is a space for real talk, real experiences and practical advice, because surviving is one thing, but figuring out how to actually live, that’s the hard part.

Hey, everyone. In this episode, I’m going to talk all about specialty pharmacies, how you get assigned one, why it can change depending on your insurance or medication, and what makes the experience a little different.

What is a Specialty Pharmacy?

You know, from how you refill a prescription to how that medication gets delivered to your door, and that’s because specialty pharmacies are critical part of managing really complex or rare conditions, but most people just don’t hear about them until they need one. And unlike your local retail pharmacy, these specialty pharmacies are designed to handle high cost, high complexity medications that often require special handling, close monitoring and coordination with your healthcare team.

Who Needs Specialty Medications?

These are medications that are typically for rare, chronic or serious diseases, think things like rheumatoid arthritis, multiple sclerosis, human immunodeficiency, so HIV, right? Psoriasis, genetic disorders, infertility, cancer and more.

Types of Specialty Medications

Now these medications can be oral. When I took Targretin, it was an oral chemotherapy I got from a specialty pharmacy. It can also be an infusion or an injectable, like my current prescription for Pegasys Interferon is an injectable that I get through a specialty pharmacy.

Why Monitoring Matters

And these medications often require close monitoring for side effects, and patients taking them often have a lot of lab tests and sometimes dose fluctuations or changes. And, the pharmacists here are often trained in specific disease categories, like right now, when I call my current specialty pharmacy, I have to pick my condition type from a menu, you know, like press one for dermatology or two for cardiology.

How Common are Specialty Pharmacies?

And just in case you’re curious, as of 2023 in the US, there were roughly 1750 pharmacies accredited from one or both of the organizations that dominate accrediting for specialty pharmacies. These are the Accreditation Commission for Healthcare, which is ACHC, and the Utilization Review Accreditation Commission, URAC. And for some perspective, this is about 3% of the pharmacies in the US, and about 2% of the population uses medications from specialty pharmacies.

How You Get a Specialty Pharmacy

So how do you get a specialty pharmacist or a specialty pharmacist? Well, these aren’t pharmacies you can just walk into. Your insurance company selects it, and at least that’s how it works for me, and those of us with insurance and these pharmacies can change depending on your medication. And this is because insurance companies may have negotiated different agreements for different prices with different specialty pharmacies for different medications. So this is a cost control measure.

Why Your Specialty Pharmacy Might Change

So, for example, when I was on Targretin, I got that from CVS Specialty Pharmacy and the Pegasys Interferon. I get that from UNC Health Specialty Pharmacy. And when Targretin wasn’t working for me anymore and I switched to Pegasys, I had to onboard to a completely new pharmacy.

A Tale of Two Specialty Pharmacies

I pretty much went from having a pharmacy where I could do everything I needed online after the initial consultation to one that well, from my perspective, seems to eschew doing anything online. It all has to be done personally over the phone, which can be a bit difficult for someone who works for a living because the pharmacy doesn’t schedule appointments. I have to respond when they call or call them back and wait on hold until they’re ready.

What Makes Specialty Pharmacies Different

So what makes a specialty pharmacy so different? And there are several things. Communication is one, refills are not automatic. I get a call right now, I used to get a text message, that I have to take this phone call and speak with a pharmacist. They want me to confirm that I haven’t skipped any doses, I haven’t changed any of my medications, and that I still need the medication, and this can be a little bit frustrating.

The Specialty Pharmacy “Inconvenience” Factor

As I said, they don’t schedule appointments, and I spend a lot of time in meetings with clients and team members at work, so I have to watch my phone for who’s calling and take it at their convenience, not mine. As to payments, I can give them a credit card each time, or they can keep one on file. I just have them keep one on file so they can quickly process my order and send out my medication. And there are storage requirements, generally, at least, for what I have access through specialty pharmacies are temperature related right now.

Shipping and Storage Logistics of Specialty Medications

Since I’m on a relatively close proximity to my current specialty pharmacy, my refrigerated medications are couriered and left on my front porch when no one is home if I’m not there to take it in. And it’s packed with insulation and those you know, freezer packs like you’d put in a beer cooler right to make sure that it doesn’t warm up enough to render the medication invalid.

High Costs, High Stakes

And when I was on Targretin, it came from a pharmacy that was in a completely different state, and it was delivered to me through a service provider like UPS. I don’t remember exactly which service provider it was in regular pharmacies don’t stock these medications because of the cost and the security involved.
You know, when I was on Targretin and the monthly cost of my daily medication was more than $14,000 a month. My current injectable is more than $1,000 for each injection, and I take one of those each week.

Why Regular Pharmacies Can’t Handle These Medications

And a lot of these medications are hazardous and require really strict storage and handling protocols that just don’t make sense for regular pharmacies to manage, even the Targretin pill I had at, you know, in the strange things of medications, right? It says I wasn’t supposed to touch it, so I was supposed to take it without touching it, until, I guess, it went on my tongue and I swallowed it and it was touched by the inside of my body, as opposed to the outside of my body. So you have to, you know, store really expensive medications in a secure way, you know, even beyond pharmacy secure, and then they all have to be stored at different temperatures, different shelf life, different interactions. So there’s a reason that these pharmacies really exist.

The Growing Need for Specialty Pharmacies

And one of the realities is that the need for patients to get medications specialty pharmacies provide is growing, if you just think about it, in 2024 the FDA approved something like 37 new drugs that were in this specialty medication class. And the increasing prevalence of chronic illness and complex therapies, right? Means there are more people like me or you, or whoever you care for that need the medications that specialty pharmacies manage. And the CDC says four in 10 adults in the US have two or more chronic diseases, and six in 10 have one.

Biosimilars and Access

And there is a rise of what are called biosimilar medications as drug patents expire. For example, in 2023 there were nine biosimilars for HUMIRA that made the drug more affordable, hence accessible. And as this happens with specialty medications, patients will get better access to life saving medications, further increasing prescription volume in specialty pharmacies.

My Three Specialty Pharmacy Experiences

Now, for me personally, I have had three different medications that came from three different specialty pharmacies so far in my life, and the experience between them was significantly different. At one pharmacy, I had the initial conversation with a pharmacist, I provided patient information and where to ship the medications, and that was it. I refilled when necessary. It’s fairly simple, non memorable, right?

The Refill Game

And another with a much more expensive drug. I did the initial onboarding, same as before, but I had to request refills at each refill point, and then provide an inventory of pills consumed and pills remaining. They would not ship my refill until my inventory went below a certain number. I never figured out what the magic number was. I think it was somewhere around 11. Was as far as I made it. And this was all done online through an app on my phone, I could call in if I wanted to, but heck, I work a full time job, I have a commute and a life I want to live. I do not want to be spending all my time on the phone when I can do everything quickly in an app.

The Frustration of My Current Specialty Pharmacy

Now, at my current pharmacy, I’m gonna say it, it’s almost as if it’s entirely run by Luddites. Nothing, and I mean nothing for me can be done online. Heck, I can’t even schedule an appointment. So right now, after getting onboarded, this is how my refills work.

A Day in the Life of a Specialty Pharmacy Refill Call

The pharmacist calls me when I come up on his or her list to call, no set time, no set day, nothing, at least that’s been communicated to me. It’s just when they call me. Well, I guess maybe there is sort of a set time. It’s only during their working hours, from something like nine in the morning to 4 pm on weekdays and not holidays.

If You Miss the Cal

So anyway, if I’m able to answer the call — I work, remember — then I have a conversation with the pharmacist about whether I’ve missed any doses, whether any of my medications have changed since we last talked, whether I’ve experienced any new side effects, whether I’ve discussed any of the above with my prescribing physician. Then they verify how I want to pay. They inform me what date my next delivery will be received.

The Callback Spiral

Now, if I’m not able to answer that phone at the beginning of this process, I call them back, and usually the pharmacist is on another call. Because guess what they’re doing? They’re making outbound calls to patients. And if I leave a message, they may or may not call me back that day or the next, which I start getting worried about not getting my refill on time. So then I, in turn, call them back, and I might be on hold, or I might have to leave another message, but it’s all so we can start the conversation to get my prescription refilled.

There Has to Be a Better Way

Now, from where I sit, this is highly inefficient. I’ve asked if I can schedule an appointment for my conversation with the pharmacist each month. The answer: nope. Can’t do that. I know it’s crazy.

Why This Matters

I have no idea how people working in roles don’t have flexibility manage this. Y’all know, I work a full-time job and it’s client focused. This whole process just adds to the stress of having a chronic disease. I truly believe there has to be a better way, but I can see the perspective from the business model, because I can’t pick up and leave and go to another pharmacy with a better setup.

Adapting and Advocating

So I do what many of us do. I adapt, I track my refills. I answer calls when I can. I ask questions even when I know the answer may not change. But I also speak up about the gaps, because the system can’t improve if patients stay silent. Specialty pharmacies are necessary, but that doesn’t mean the way they operate works for everyone.

If you’re navigating this too, you are not alone, and you are not wrong for thinking there has got to be a better way. Thanks for listening, and I’ll see you next time.

Thanks for listening to Fine, But Not Fine. If this episode resonated with you, subscribe so you don’t miss what’s next. And if you’ve got a story question or just need to vent, reach out. I’d love to hear from you until next time, take care and keep on going.