Challenges PsA Patients Face: Accessing Medication
It is very difficult to find the right words to really explain the level of frustration and anger when it comes to accessing specific treatment. Even when you find yourself facing hurdle after hurdle simply trying to get your hands on the medication, even after it has been prescribed by your rheumatologist.
The challenges patients face assessing medication should not be so difficult. Not only that, there shouldn't be so darn many of them. Let me take you along with me as I attempted to face only one of the many challenges.
Getting the medication in our painful hands
In my experiences as an advocate, I’m often asked about the challenges patients face when accessing their medication. Doctors want to know why patients aren’t “compliant.” Even pharmacies want to know why patients aren’t actually taking their medicine.
While the challenges are many, one of the simplest answers is that we have a ridiculous amount of hoops to go thru just to literally get the medication in our hands.
It takes more than a little patience
I’ll be honest, there are many people in the world who know, I mean, legit know that they aren’t patient people. And I’m not one of them. I mean, just so you get an idea, I taught middle school, happily, for 15 years before I got sick. And now, I homeschool my own three children. So trust me when I say I promise, I am a patient person.
And still. After fighting, and advocating, and wrangling, and jumping through all the hoops every single day, for over a month, I still don’t have my prescribed medicine.
Not only that, but I can’t even really tell you why I don’t have it. The specialty pharmacy says “processing” the doctor’s office says that they “sent it,” even insurance says that they have approved it.
And yet, here I sit. No biologic medication. No delivery date. No idea when I will even get a delivery date, much less my actual medicine. Nothing. Nada. Zip. Zero.
No right to complain
Part of me knows that even amidst all of that, that I should be grateful. Because there are plenty of people that can’t even get prescribed biologics. And on top of that, there are even more people who can’t afford insurance to help them get their hands on biologics.
Not to mention those with psoriatic arthritis and other autoimmune conditions who don’t have any access at all to biologic medications. I’m sure I sound like a giant whiner filled with nothing but “first-world problems.” I get it. I really do. Don’t worry, I carry the guilt of these thoughts too.
But when the voice on the other end of the line calls themselves a Patient Care Advocate and who in reality has no idea what being a patient care advocate even means, it is terribly frustrating. All they have is their little computer screens telling them everything to say and to pass the buck onto someone else who also has no idea what the hold up on the medication really is.
I don’t mean to paint every person on the other end of the line with the same brush (so to speak), but just once, it would be nice for someone to not only understand my frustration but to actually be in a position to do something to help me.
So many questions
How will I even know if my medicine is working if the stress of just getting the medicine in my body is enough to cause the tsunami of all flares? Trust the process is what so many “experts” say. What the heck is that supposed to mean?
Am I just supposed to sit back and let my disease progress day after day while there are scientifically proven options to help fight it? Is it even fair to my children to let them have a Mom who just sits there and doesn’t do everything in her power to fight for the symptom-free Mom they deserve?
Fighting our disease and our own immune systems is difficult enough, why does fighting for medication have to be so difficult too? What it really comes down to is this. Isn’t life with psoriatic arthritis already hard enough?
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