Where Did My Prescription Go? Navigating the Black Hole of Specialty Pharmacy

The importance of improving the specialty pharmacy experience for patients newly diagnosed with a life-changing disease.

Six months ago, one of my best friends called me with some unexpected and scary news. Her mother had just been diagnosed with stage I ovarian cancer and was about to undergo immediate surgery to remove a large abdominal mass. As if this alone wasn’t distressing enough, her mom would then have to complete several months of chemotherapy post-surgery to make sure nothing was left behind.

Taking everything into account, the prognosis was mostly positive and they were lucky to have caught it early. However, in the days following the surgery, my friend was worried about when and how they would obtain her mother’s specialty medication instead of focusing her efforts solely on caring for her mother.

After all, they didn’t leave the hospital with a prescription in hand. Instead, the physician sent it directly to the specialty pharmacy. He gave them the anticipated start date for an in-house chemotherapy regimen and then said that the pharmacy should be reaching out with more information and to set up delivery of the order.

As time went on while her mother was recovering, my friend and her family were becoming increasingly concerned that the medication wouldn’t be delivered in time and that the chemotherapy schedule would inevitably be delayed. A week had already gone by and still no word from the specialty pharmacy.

Without much else to go off of, and already faced with enough uncertainty given the diagnosis, my friend reached out to the doctor’s office again looking for answers. The nurse provided some additional information and after hanging up, my friend began the frantic hunt for her mother’s medication. The next phone call that I received went something like this:

Me: Hey! I am glad you called, how is your mom doing? I have been thinking about her.

My Friend: Mom is doing okay but I am really frustrated right now. Can I ask you a question? I thought you might be able to help.

Mom is supposed to start chemo next week but we don’t have the medication yet and we haven’t heard anything from the pharmacy. The doctor’s office said that they sent it to a specialty pharmacy and then they gave me the name of the pharmacy. I started searching online and I have never even heard of them. Their website is weird too, is this even a real pharmacy? I don’t know what to think.

Me: Don’t worry, I have heard of them. They are a real pharmacy and in fact, they have a good reputation. I am sure they are working on your mom’s script. Also, if the doctor’s office sent the prescription directly there, I am sure they have some prior experience working with them too. I’m sure there’s nothing to worry about.

My Friend: But it’s been over a week! I don’t understand, why haven’t they called us? She really needs this!

Me: I hate to say this, but I am not surprised you haven’t heard anything yet. It’s not that I don’t think that they are working on it, but there are a lot of steps in the process and it might just be held up right now. Here is what I think you should do: You have the phone number, right? Give them a call.

Once you are able to talk with them, you will feel better knowing that they are working on the order. Additionally, many times specialty drugs require prior authorization or if it is a chemotherapy, they may need clarification regarding the on/off cycle or something else related to the dosing. I wouldn’t wait, you’ll be able to take more control over the process if you call now.

My Friend: Okay, thanks. I will call them right now.

Me: “Okay, call me back and let me know what happens. I am sure that you’ll be able to get the medication in time, usually the orders are overnighted once they are processed and scheduled so that part is pretty quick.”

My Friend: Alright, that’s at least good to know. Thanks for the advice.

**Call Ends**

Houston, We Have a Problem

As we hung up, I was shaking my head at the situation. While I reflected on the conversation that had just taken place, my thoughts swirled. At first, I was surprised by my friend’s blatant skepticism.

Being a health care professional herself, the thought would have never even crossed my mind that she would think to question whether or not the pharmacy was legitimate or credible. Next, even though it was specialty pharmacy, this was still pharmacy we were talking about here.

The steps might not be completely identical to retail, but from intake (drop-off) to delivery (pick-up), the order of operations was still somewhat standard. The pharmacy would first receive the prescription order and create a profile for the patient.

Next, they would perform a benefits investigation to ensure they could fill the prescription. A pharmacist would verify the prescription and somewhere along this process, the patient would be contacted and delivery would be setup. With my experience in specialty pharmacy, I knew that nothing out of the ordinary was taking place, but why did the process seem so enigmatic to an outsider?

On the other hand, thinking back to the many interactions I have personally had with new specialty patients, I also knew that this wasn’t the first time I had heard similar concerns or confusion. I began wondering how many of our patients felt like this.

I started imagining outer space. Was a patient’s first encounter with specialty pharmacy more like Close Encounters of the Third Kind? Did the idea of sending a prescription to an elusive specialty pharmacy feel more like releasing it into the cosmos? Did patients get to speak with an informed representative right away or did automated messaging make first time interactions feel more like a call from ET The Extra Terrestrial?

After all, specialty pharmacy isn’t like your regular pharmacy. You can’t just pop-in, drop of your prescription, and pick it up in an hour. There isn’t a person standing in front of you that you can talk with about what to expect and what your immediate questions and concerns might be. Without the sense of gravity that a physical location provides, to the unfamiliar patient, the prescription may seem as though it could just be out there floating somewhere in the galaxy or worse, lost into the abyss.

Most patients who are prescribed a specialty medication usually aren’t handed a copy of the prescription upon leaving the provider’s office either. Typically, such as in my friend’s example, the prescriber advises the patient or family that the prescription will be sent directly to the specialty pharmacy or, in some cases, to the mandatory hub.

From there, the office assumes the pharmacy will direct correspondence from that point on. Scenarios in which the patient is handed a paper prescription or in the event that the script is e-scribed, a patient may unassumingly wander into their retail pharmacy only to be told that the retail isn’t able to fill the script. Instead, the patient will need to contact their insurance for more information regarding who their specialty pharmacy is. In the former scenario, the patient is left waiting and in the latter, even savviest of patients may not know how to handle filling their new specialty medication.

In both cases, the patient and family are frantically wondering what to do next with many questions they have about their treatment regimen.

  • What is a specialty pharmacy?
  • Where does my prescription go?
  • Who is filling it?
  • How will we get it?
  • When will it arrive?
  • How much will it cost?
  • Can I talk to someone?

And truth be told, many of our patients are not dealing with a simple diagnosis.

The uncertainty can create a lot of additional and unnecessary stress. As we are wrapped in the daily processes within the walls of specialty pharmacy, it is easy to forget that a lot of the orders that we are filling are not routine medications. For many of our new patients and their families, they are in fact going through some of the worst experiences of their lives.

One Small Step for Specialty Pharmacy, One Giant Leap in Patient Care

So, if specialty pharmacy is the final frontier then how can we make the initial experience for new patients more tangible and less like an anomaly of science fiction? First and foremost, establishing outreach to new patients as soon as possible is key.

New patients are often dealing with tremendous diagnoses and establishing a baseline contact can help set realistic expectations and reduce the unknown. Oftentimes, delay of an order is a result of either insufficient information or an inability to fill the medication. Whether it’s a network or payer issue, if the drug is not available, or it needs to go through an exclusive source, providing information up front helps patients navigate otherwise unchartered territory.

Next, providing personal touch and exceptional service sets specialty apart from your average pharmacy. We are experts in these medications and disease states and our pharmacists can offer clinical expertise and unparalleled counseling. Our knowledge and care can enhance a patient’s journey with their medication regimen, whether by increasing adherence, minimizing adverse effects, or discussing proper storage, handling, and disposal of high touch therapies.

Even if your specialty pharmacy is not the pharmacy that will be filling the order, communicating with the patient from the outset can at the very least set expectations. The sooner we reach out, the more at ease we can put our patients, bringing them back down to earth while delivering service that is out of this world.

About the Author

Jacqueline Hanna earned her Bachelor of Science in Biological Sciences from the University of Pittsburgh before earning her Doctor of Pharmacy degree from Duquesne University in 2011. She recently received her Master of Science in Pharmacy Business Administration (MSPBA) program at the University of Pittsburgh, a 12-month, executive-style graduate education program designed for working professionals striving to be tomorrow’s leaders in the business of medicines. Jacqueline has spent the last 4 years working in Specialty Pharmacy, initially as a clinical pharmacist and most recently working on a variety of high-profile Specialty Operations Projects. In her current role, she is able to channel her passion for patient care into innovation and process design while being part of a concerted effort to transform Specialty Operations and improve the patient experience.