What is a Specialty Pharmacy - Ep. 15

Specialty pharmacies handle complex meds—but for patients, they often create more stress than support. In this episode, I unpack what they are, why they exist, and the real-life frustrations that come with them. From phone tag and refill delays to meds that require special handling, I share how the system often overlooks the patient experience.

Episode Transcript

(00:01):
You look fine, but you're notfine. And that's exactly what
we're here to talk about.Welcome to Fine, But Not Fine,
the podcast about navigatingrare disease, health care
battles, and the messy realityof chronic illness. I'm Kelly,
Paul, and I've been living withMycosis Fungoides since
2015.This is a space for realtalk, real experiences and

(00:26):
practical advice, becausesurviving is one thing, but
figuring out how to actuallylive, that's the hard part.
Hey, everyone. In this episode,I'm going to talk all about
specialty pharmacies, how youget assigned one, why it can

(00:50):
change depending on yourinsurance or medication, and
what makes the experience alittle different.
You know, from how you refill aprescription to how that
medication gets delivered toyour door, and that's because
specialty pharmacies arecritical part of managing really
complex or rare conditions, butmost people just don't hear

(01:11):
about them until they need one.And unlike your local retail
pharmacy, these specialtypharmacies are designed to
handle high cost, highcomplexity medications that
often require special handling,close monitoring and
coordination with yourhealthcare team.

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These are medications that aretypically for rare, chronic or
serious diseases, think thingslike rheumatoid arthritis,
multiple sclerosis, humanimmunodeficiency, so HIV, right?
Psoriasis, genetic disorders,infertility, cancer and more.

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Now these medications can beoral. When I took Targetin, it
was an oral chemotherapy I gotfrom a specialty pharmacy. It
can also be an infusion or aninjectable, like my current
prescription for PegasysInterferon is an injectable that
I get through a specialtypharmacy.
And these medications oftenrequire close monitoring for

(02:16):
side effects, and patientstaking them often have a lot of
lab tests and sometimes dosefluctuations or changes. And,
the pharmacists here are oftentrained in specific disease
categories, like right now, whenI call my current specialty
pharmacy, I have to pick mycondition type from a menu, you

(02:38):
know, like press one fordermatology or two for
cardiology.
And just in case you're curious,as of 2023 in the US, there were
roughly 1750pharmaciesaccredited from one or both of
the organizations that dominateaccrediting for specialty

(02:59):
pharmacies. These are theAccreditation Commission for
Healthcare, which is ACHC, andthe Utilization Review
Accreditation Commission, URAC.And for some perspective, this
is about 3% of the pharmacies inthe US, and about 2% of the

(03:25):
population uses medications fromspecialty pharmacies.
So how do you get a specialtypharmacist or a specialty
pharmacist? Well, these aren'tpharmacies you can just walk
into. Your insurance companyselects it, and at least that's
how it works for me, and thoseof us with insurance and these
pharmacies can change dependingon your medication. And this is
because insurance companies mayhave negotiated different

(03:46):
agreements for different priceswith different specialty
pharmacies for differentmedications. So this is a cost
control measure.
So, for example, when I was onTargetin, I got that from CVS
Specialty Pharmacy and thePegasys Interferon. I get that
from UNC Health SpecialtyPharmacy. And when Targretin

(04:09):
wasn't working for me anymoreand I switched to Pegasys, I had
to onboard to a completely newpharmacy.
I pretty much went from having apharmacy where I could do
everything I needed online afterthe initial consultation to one
that well, from my perspective,seems to eschew doing anything
online. It all has to be donepersonally over the phone, which

(04:31):
can be a bit difficult forsomeone who works for a living
because the pharmacy doesn'tschedule appointments. I have to
respond when they call or callthem back and wait on hold until
they're ready.
So what makes a specialtypharmacy so different? And there
are several things.Communication is one, refills
are not automatic. I get a callright now, I used to get a text

(04:52):
message, that I have to takethis phone call and speak with a
pharmacist. They want me toconfirm that I haven't skipped
any doses, I haven't changed anyof my medications, and that I
still need the medication, andthis can be a little bit
frustrating.
As I said, they don't scheduleappointments, and I spend a lot
of time in meetings with clientsand team members at work, so I
have to watch my phone for who'scalling and take it at their

(05:14):
convenience, not mine. As topayments, I can give them a
credit card each time, or theycan keep one on file. I just
have them keep one on file sothey can quickly process my
order and send out mymedication. And there are
storage requirements, generally,at least, for what I have access
through specialty pharmacies aretemperature related right now.

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Since I'm on a relatively closeproximity to my current
specialty pharmacy, myrefrigerated medications are
couriered and left on my frontporch when no one is home if I'm
not there to take it in. Andit's packed with insulation and
those you know, freezer packslike you'd put in a beer cooler
right to make sure that itdoesn't warm up enough to render

(05:56):
the medication invalid.
And when I was on Targretin, itcame from a pharmacy that was in
a completely different state,and it was delivered to me
through a service provider likeUPS. I don't remember exactly
which service provider it was inregular pharmacies don't stock
these medications because of thecost and the security involved.
You know, when I was onTargretin and the monthly cost

(06:18):
of my daily medication was morethan $14,000 a month. My current
injectable is more than $1,000for each injection, and I take
one of those each week. And alot of these medications are
hazardous and require reallystrict storage and handling
protocols that just don't makesense for regular pharmacies to
manage, even the Targretin pillI had at, you know, in the

(06:41):
strange things of medications,right? It says I wasn't supposed
to touch it, so I was supposedto take it without touching it,
until, I guess, it went on mytongue and I swallowed it and it
was touched by the inside of mybody, as opposed to the outside
of my body. So you have to, youknow, store really expensive
medications in a secure way, youknow, even beyond pharmacy

(07:01):
secure, and then they all haveto be stored at different
temperatures, different shelflife, different interactions. So
there's a reason that thesepharmacies really exist.
And one of the realities is thatthe need for patients to get
medications specialty pharmaciesprovide is growing, if you just
think about it, in 2024 the FDAapproved something like 37 new

(07:26):
drugs that were in thisspecialty medication class. And
the increasing prevalence ofchronic illness and complex
therapies, right? Means thereare more people like me or you,
or whoever you care for thatneed the medications that
specialty pharmacies manage. Andthe CDC says four in 10 adults

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in the US have two or morechronic diseases, and six in 10
have one.
And there is a rise of what arecalled biosimilar medications as
drug patents expire. Forexample, in 2023 there were nine
biosimilars for HUMIRA that madethe drug more affordable, hence

(08:11):
accessible. And as this happenswith specialty medications,
patients will get better accessto life saving medications,
further increasing prescriptionvolume in specialty pharmacies.
Now, for me personally, I havehad three different medications
that came from three differentspecialty pharmacies so far in

(08:33):
my life, and the experiencebetween them was significantly
different. At one pharmacy, Ihad the initial conversation
with a pharmacist, I providedpatient information and where to
ship the medications, and thatwas it. I refilled when
necessary. It's fairly simple,non memorable, right?
And another with a much moreexpensive drug. I did the

(08:55):
initial onboarding, same asbefore, but I had to request
refills at each refill point,and then provide an inventory of
pills consumed and pillsremaining. They would not ship
my refill until my inventorywent below a certain number. I
never figured out what the magicnumber was. I think it was

(09:17):
somewhere around 11. Was as faras I made it. And this was all
done online through an app on myphone, I could call in if I
wanted to, but heck, I work afull time job, I have a commute
and a life I want to live. I donot want to be spending all my
time on the phone when I can doeverything quickly in an app.

(09:38):
Now, at my current pharmacy, I'mgonna 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, Ican't even schedule an
appointment. So right now, aftergetting onboarded, this is how
my refills work.

(09:58):
The pharmacist calls me when Icome 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 justwhen they call me. Well, I guess
maybe there is sort of a settime. It's only during their
working hours, from somethinglike nine in the morning to 4 pm
on weekdays and not holidays.

(10:20):
So anyway, if I'm able to answerthe call -I work, remember -
then I have a conversation withthe pharmacist about whether
I've missed any doses, whetherany of my medications have
changed since we last talked,whether I've experienced any new
side effects, whether I'vediscussed any of the above with

(10:41):
my prescribing physician. Thenthey verify how I want to pay.
They inform me what date my nextdelivery will be received.
Now, if I'm not able to answerthat phone at the beginning of
this process, I call them back,and usually the pharmacist is on
another call. Because guess whatthey're doing? They're making

(11:01):
outbound calls to patients. Andif I leave a message, they may
or may not call me back that dayor the next, which I start
getting worried about notgetting my refill on time. So
then I, in turn, call them back,and I might be on hold, or I
might have to leave anothermessage, but it's all so we can

(11:21):
start the conversation to get myprescription refilled.
Now, from where I sit, this ishighly inefficient. I've asked
if I can schedule an appointmentfor my conversation with the
pharmacist each month. Theanswer: nope. Can't do that. I
know it's crazy.
I have no idea how peopleworking in roles don't have

(11:44):
flexibility manage this. Y'allknow, I work a full-time job and
it's client focused. This wholeprocess just adds to the stress
of having a chronic disease. Itruly believe there has to be a
better way, but I can see theperspective from the business
model, because I can't pick upand leave and go to another

(12:05):
pharmacy with a better setup.
So I do what many of us do. Iadapt, I track my refills. I
answer calls when I can. I askquestions even when I know the
answer may not change. But Ialso speak up about the gaps,
because the system can't improveif patients stay silent.

(12:27):
Specialty pharmacies arenecessary, but that doesn't mean
the way they operate works foreveryone.
If you're navigating this too,you are not alone, and you are
not wrong for thinking there hasgot to be a better way. Thanks
for listening, and I'll see younext time.
Thanks for listening to Fine,But Not Fine. If this episode

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resonated with you, subscribe soyou don't miss what's next. And
if you've got a story questionor just need to vent, reach out.
I'd love to hear from you untilnext time, take care and keep on
going.