Photo by Angelica March on Unsplash
“Thank you for being a part of our network, sir. Would you like to join the auto renewal plan?”
“Well, maybe, but—”
“Ok, great, yes. We can do that for you. Let me sign you up.”
“Um, ok, but what I really need—”
“Can you confirm your name and address for me again, sir?”
“David… 88888.”
“Ok, great, yes. Thank you.”
“And what I was calling for—”
“Yes, ok, you will get text message confirmation.”
“Ok, but—”
“And how about email and text notifications. You like to sign up?”
“You just sent me a text—”
“Ok, yes, we can do that for you. You receive text confirmation.”
“Got it, but I have some questions.”
“Ok, yes, we can answer your questions, no problem. First, you want to enroll in copay discount program?”
“Wait, what?”
“Copay discount program. You want to enroll?”
“The copay is high enough that I need a discount program?”
“Yes, I send you text confirmation. There is Patients Advocate Foundation… and Opus Health Foundation… and Assist Rx… and—”
“Hold on, slow down, please.”
“Yes, of course. The phone numbers are 888-888-8888 for… and 888-333-4444 for… and 333-888-3333 for…”
“Do I have to call them to enroll?”
“Yes, you call and get discount on copay.”
“I need to call aIl of them?”
“Yes, they help with copay. You want to transfer to pharmacist now?”
“But how much is the copay?”
“They help with that. I will transfer to pharmacist now.”
“Hold on, I had some questions. My Humira prescription was processing in my account for over a month, but it disappeared a couple weeks ago without any explanation.”
“Yes, let me see. Yes, you have Humira in processing in your account, 40 mg and 80 mg. Let me send you text confirmation—”
“No, the first prescription that disappeared. What happened to that one?”
“Um, I don’t know, but you have two now.”
“Yes, but that doesn’t make sense. I saw the two new prescriptions, both for Humira, one at 40 mg but with zero supply and one for 80 mg but with 28 days’ supply. Both have been processing for over 2 weeks.”
“Yes, you’re correct. It’s still in processing.”
“But why? Why did the first prescription disappear and then 2 new ones appear? And why would I need a 40 mg injectable and 80 mg injectable?”
“Mmhm, yes. Well, we process what your doctor sent to us.”
“Ok, but between the first and second prescriptions showing up in my account, I called your team to figure out why the first prescription disappeared and they said that my insurance doesn’t cover this drug. So why would you start processing it again?”
“Oh, yes, we confirm all that with insurance.”
“Did you? Is it approved by my insurance?”
“Oh, ok, let me check. Mmmm… yes, I see it’s still in processing.”
“Yeah, I know that, but what does that mean? Are you still waiting to hear something from my insurance? I received a letter in the mail from a company named Rx X saying that I was approved for something called Hadlima, which appears to be a biosimilar to Humira. My doctor says he sent that letter to you. Are you associated with Rx X?”
“Oh, yes, mmhmm. Yes, if your doctor sent the letter then we just need to wait for pharmacist to process.”
“My doctor sent the letter to you over a month ago.”
“Ah yes, that’s good. Then we wait for pharmacist to approve.”
“And how long does that take?”
“10-15 business days.”
“But it has already been over 30 days.”
“Mmhmm, you like to talk to pharmacist? I transfer you.”
“Wait—” Click.
***
I listened to elevator music for another thirty minutes before giving up on speaking with a pharmacist, but if you need a biologic, a specialty pharmacy like this one that typically functions over the phone is where it begins. Specialty pharmacies, which the National Association of Specialty Pharmacists defines as “state-licensed pharmacists that solely or largely provide medications for people with serious health conditions requiring complex therapies,”1 started appearing on the pharmacy scene in the mid-1980’s. One of the first known U.S. pharmacists that specialized in supplying drugs for severe health conditions with complex therapies was a small, corner drugstore named Stadtlanders in Pittsburgh. At the time, Pittsburgh was one of the first cities where major organ transplants were first being implemented, and patients needed special drugs to prevent their bodies from rejecting new organs. When its customers started to struggle with navigating the challenges of high-cost, specialty drugs with complex administration methods like injectables, Stadtlandersdevised a new kind of pharmacy that helped patients manage medication reimbursement and provided counseling and education.2 Sounds like a great plan: a patient-centric pharmacy that is designed to help patients navigate complex drugs with significant side effects, confusing paperwork and approval processes, and complex administration methods. And that is supposedly the specialty pharmacist’s role today, to lead a “patient-centric approach [to managing specialty drugs] that incorporates a comprehensive and coordinated model of care for patients with chronic illnesses and complex medical conditions… This patient-centric model is organized to provide reliable access to typically high-cost… and hard-to-manage therapies within a collaborative, quality-driven framework designed to achieve superior clinical, humanistic, and economic outcomes.”3
In the early days, independent specialty pharmacies like Stadtlanders committed themselves to patient support, an enviable characteristic for any healthcare provider. Unfortunately, a lot has changed in the last fifty years from when Stadtlanders pioneered this type of pharmacy service, including Big Pharma tapping into the money.
As Donald Vidic, a former Stadtlanders executive once explained, “one percent of its population [can equal] 30% of a [health plans’] drug costs. By 2030, specialty pharmacy costs are expected to exceed one trillion dollars annually and to be 44% of a health plan’s drug costs”. As time progressed, small independent specialty pharmacists like Stadtlanders were consumed by Big Pharma so that today, Pharmacy Benefit Managers (PBMs) control the market and the money.4 A predictable consequence of big corporations taking over the process is a reduction in customer service.
The telephone call above is from my first encounter with a specialty pharmacy and is representative of a system that no longer appears to be patient-centric. The specialtypharmacy was originally designed to coordinate communications between patients, insurance, and prescriber, but it does not appear that the current system is working as originally intended. Since the initial call I had almost three months ago, I’ve had three to four subsequent interactions with the pharmacy, including calls, texts, and emails. I spoke with my prescribing doctor to see if they could push the needle, but their efforts just caused confusion by starting the process over from scratch with a new prescription.
Then I received a letter via snail mail that a biosimilar was approved, but as I found out later, it was through a completely different specialty pharmacist than the first one that my prescriber used. It appeared to be a legitimate letter considering it was the correct biosimilar for Humira, but nothing indicated who it was prescribed by, whether it was approved by my health plan, or whether the company sending the letter was associated with the first specialty pharmacist. Only after a random conversation with a coworker who also has an autoimmune disease did I discover the company in the letter is a PBM that works with my employer to coordinate claims and communication between prescriber, insurance, and specialty pharmacy. Apparently, my employer’s preferred specialty pharmacy is different from the one my prescriber originally sent the prescription to and that I spoke to over the phone. And the current specialty pharmacist only handles medication distribution, not coordination or education. So, instead of defining them as a specialty pharmacist, I think it’sfair to call them simply a pharmacist that distributes costly medications. I’m currently lacking the coordination, education, and counseling of the so-called ‘specialty’ nature.
Strangely, I started receiving texts from this new pharmacy indicating that they were also processing my prescription (without opting into text messaging that I recall), but for the original Humira prescription rather than the Hadlima biosimilar for which I had an approval letter. I was feeling optimistic at this point with two pharmacists in a race to get my biologic approved first, only to receive a message from pharmacist #2 two weeks later indicating that my insurance denied the request (specialty pharmacy #1 still sits “in process”). Humira is the most common biologic proscribed for my autoimmune disease, spondyloarthritis, and yet I received no explanation from insurance for why they denied it. The most natural next step was to review the EOB in my insurance account, but no record of the drug request existed. So, I used their email system to ask why the prescription was denied. I give them credit for responding within two days, but only to say that I had to speak with the PBM that sent me the approval letter for the biosimilar because the insurance company did not coordinate approvals for these drugs. Once again, back to the PBM since my employer’s preferred pharmacist does not communicate or coordinate approvals, they only distribute drugs.
The most current pharmacist did communicate, however, to offer me a very generous $450 discount to bring the out-of-pocket costs down to $7,067 per month if I want to pay for Humira on my own. I’m still deciding if I want to pay more for this drug than my mortgage, but I very much appreciated the discount, nonetheless.
This is obviously a more complex problem and discussion than one blog post can address, but when I have to navigate two different specialty pharmacies, a PBM, insurance, and my prescriber to get a standard medication for a chronic health condition, the system is not working for those in need. I acknowledge that the high cost of these medications, and the severity of the conditions they treat, necessitates a high level of scrutiny, but there needs to be a better system and coordination between all parties involved in the process to help streamline it for patients. This is especially important when the specialists within this industry, the specialty pharmacists, whose job it is to coordinate through all the confusion, are failing to coordinate anything and the patient is left to do it himself.
So, my next step, after confirming over the phone with the PBM that I need my doctor to prescribe the specific biosimilar that they approved (instead of the PBM communicating this to my doctor), I am back to square one—trying to connect with my doctor to tell him which biosimilar he needs to prescribe to me.
Copyright 2026 David Lister. All Rights Reserved.
- Byrne M. The Ins and Outs of Specialty Pharmacy. Pharmacytimes.com. December 6, 2018. ↩︎
- Vanscoy GJ. The Emergence of Specialty Pharmacy. J Manag Care Spec Pharm. 2020 Mar;26(3):229-233. doi: 10.18553/jmcp.2020.26.3.229a. PMID: 32105167; PMCID: PMC10391113. ↩︎
- Alder K. The Evolution of the Specialty Pharmacy Effectively Partnering for Persistence. Pm360online.com. February 14, 2014. ↩︎
- Kober S. The Evolution of Specialty Pharmacy. Biotechnol Healthc. 2008 Jul;5(2) : 50-1. PMID: 22478714: PMCID: PMC2706163. ↩︎
Invisible Pain 