I've been on specialty drugs for 6 years now and let's just say we have a love/hate relationship.
What are specialty drugs? According to Magellan Rx Management, they are medications that are used to treat complex chronic conditions and "must be either identified as high cost, high complexity or high touch to be classified as a specialty medication."
Thus far, on my journey as an autoimmune patient, I've been on three different biologics which are classified as specialty drugs. While the current biologic I take has saved my life, it has come with it's own set of frustrations. When you're living with a chronic condition, the last thing you want to deal with is administrative stressors. And a delay in receiving your medication can yield severe pain, fatigue, stress and breakthrough symptoms.
If you can relate, feel free to tweet at me or send me an email I'm always working to collect stories and bring them back to the people who run these processes so that we can CHANGE them.
So without further ado...my 10 nightmare specialty drug experiences:
1) When you spend your life on the phone with the specialty pharmacy, your doctor, insurance and every one under the sun to coordinate getting the medication.
2) When the receptionist fundamentally doesn't understand that you NEED to get your shot every 2 months...not in 6 months when the doctor's next appointment is and that it's ok to overbook because the shot takes TWO MINUTES to administer.
3) When the appointment to administer your shot takes infinite amounts of time because they decide to send in the med students to learn your life story.
4) When you administer your shot at home and the medication gets sent to the wrong address.
I finally worked up the courage to administer my shot on my own instead of traveling an hour each way to the hospital to get the injection. Needless to say dealing with the shot getting sent to the wrong address didn't make my life any easier.
5) When your $20,000 medication gets HANDED TO ANOTHER PATIENT AT THE PHARMACY.
6) And now that you administer your shot at home, you have to dispose of your needles safely but the pharmacy doesn't send you a sharps box.
7) And then the next time you specifically ask for a sharps box and they send you one that has an opening which doesn't even fit the shot.
Luckily my co-worker shoots up for his autoimmune disease so he hooked me up with a sharps box.
8) And did you know that you have to trek all the way to city hall to dispose of your sharps? But not your local pharmacy, which would be infinitely easier. It's like they WANT to make it difficult.
9) Back when I received at-home infusions, a classic New England snow storm meant a delay in getting my medication, which meant level 10 pain and bedridden days.
10) And finally...living with the fear that your specialty medicine will stop working due to a build up of antibodies is ever present.