When I first learned that my insurance required me to use a specialty pharmacy for my biologic medication, it didn’t sound too bad. My first baby was only a few months old, so having the medication delivered rather than having to drag my infant to the local pharmacy was appealing. On paper, the specialty pharmacy was also supposed to help me with insurance verification and prior authorization paperwork.
Unfortunately, my actual experiences with specialty pharmacies have almost never matched the promises made on paper. Over the past few years, my family has changed health insurance numerous times, so I’ve been forced to deal with several different specialty pharmacies. I’ve also spoken to many patients with similar stories. I hope that sharing my experiences can give healthcare providers some insight into what their patients may be dealing with.
The Prior Authorization Process
It’s not an exaggeration to say it has sometimes taken me 10 or more phone calls to the specialty pharmacy to complete the prior authorization process when a new biologic is prescribed for me or I am changing pharmacies or even when my previous authorization paperwork expires. I always wait a few days after my rheumatology team tells me the paperwork has been submitted, but it’s still not unusual for the specialty pharmacy to tell me they don’t have my paperwork the first time I call. They generally don’t offer any options other than to call back again later. If they tell me they still don’t have my paperwork on the second or third call, I call my nurse to confirm it was submitted. She, of course, tells me it was submitted the same day my doctor and I decided on the new medication. She tries calling the pharmacy too.
When the pharmacy still claims not to have my paperwork, I try insisting that isn’t possible. So they transfer me to another department and the call gets dropped. Every time I call back or get transferred, I have to start explaining myself all over again.
Each call is a delay in getting the medication I need to function. Each call takes valuable time and energy, of which I have a very limited supply to begin with. In some cases, it has taken weeks and many hours on the phone before my first shipment goes into transit.
Refilling a Prescription
Ordering a refill can also be time consuming. In most cases, I have had to call each month to request a refill. Any delay in finding time to place this phone call results in delays receiving the medication, which sometimes causes delays in taking the prescribed medication. Patients have very little flexibility in deciding when to call for a refill—insurance companies generally won’t let us place the refill order until there are 2 or fewer doses left of our medication.
When calling for my refill each month, I have often had to navigate through several minutes of recorded messages. I would regularly be asked to provide information – such as my member ID or birthday—using the keypad on my phone, only to be asked to provide the exact same information again as soon as I reached a representative. I had to answer the same questions every single month.
One particularly frustrating question was, “Will you be available to sign for the shipment?” That was a difficult question to answer. While the representative could tell me what day the shipment would arrive, they were never able to estimate a time of day. This meant that in order to receive my medication, I either had to sit at home all day long waiting to sign for the package or accept financial liability if the package was lost or stolen. Neither option is a good one.
If there is a delay in the delivery of our medication, we have no way of knowing how the package was stored in the interim. Since most biologic medications need to be refrigerated, it takes extra phone calls to determine whether the medication is still effective and safe to take if the ice packs aren’t solid when the shipment arrives.
When packages haven’t arrived at all on the day they were initially promised, I’ve been in situations where the specialty pharmacy required me to waive the need for a signature upon delivery when I haven’t been able to waste another day waiting at home. I have typically been given a tracking number and told to check with the mail carrier, which is usually another system of recorded menus that make it difficult to speak to an actual person.
Very Limited Recourse
Usually, if a consumer has a bad experience they can take their business elsewhere—but not so with specialty pharmacies. I had one health insurance plan that offered a list of two or three specialty pharmacies to choose from, but most carriers required me to use one specific pharmacy. This meant that if I had any issues, I had no choice but to continue fighting through them month after month if I wanted to receive my medication. This type of administrative stress is difficult for anyone and can be particularly draining for patients with immunologic disorders already living with chronic pain and fatigue.
Through all my experience, I had only one specialty pharmacy that was able to keep frustrating experiences to a minimum, at least by comparison. However, only certain insurance plans allowed me to choose this pharmacy, and since my health insurance is dictated by my husband’s employment, I’m often stuck dealing with a specialty pharmacy I dislike while knowing that some patients are being offered better experiences. I have little doubt that some patients become so frustrated with the specialty pharmacy process that they give up and are among the batch who are then considered “nonadherent to therapy.”
How You Can Help
If your patients must use a specialty pharmacy, you can help by making sure paperwork is submitted as efficiently as possible. If acceptable by the specialty pharmacy, send these documents electronically to reduce the chances of faxes being lost. I really appreciated that my nurses tried to help me follow up with the pharmacy when problems occurred. Occasionally, my rheumatologist also gave me sample medications when my shipments were delayed to avoid missing a dose.
Given the choice today, I would honestly rather drive to the local pharmacy with all three of my kids in tow to pick up my medications in person. Unfortunately, patients aren’t usually given a choice at all, so please try to be as supportive and understanding as possible through what is often a complicated process.
Mariah Zebrowski Leach is the creator of the award-winning blog From This Point Forward and manages a Facebook support group for moms with chronic illnesses called Mamas Facing Forward. She has written for numerous prominent health publications and websites.