Who else here has a rare, chronic disease?
I haven't talked much about it here, but for just over a year, I've been very sick with Systemic Lupus, a disease in which my immune system attacks everything but what it should. In other words, me. We've been trying everything from anti-malarials, steroids (lots of steroids), anti-inflammatory medications, and inhalers to manage the respiratory symptoms. We've tried chemotherapy. We've tried cannabis derivatives and opioids, which make my trips to the pharmacy for refills very interesting. We've tried most of them in combination. (I had to ditch the antimalarials because of side effects.)
That has worked, kind of. Though I still had a lot of symptoms, I figured out how to manage, and manage I did. Until last week. I had to go to the doctor with the "even air touching my skin feels like I'm being scrubbed with hot lava rocks" kind of pain. The doctor prescribed a new medication to substitute for the chemo. It's the first ever developed specifically to not only address my illness, but reduce the specific antibodies making me sick. Great, right?
Nope. Not because it doesn't work. I wouldn't know if it will because I can't get it yet. Because it's a new medication for a rare condition, it's super expensive, it's only available through specialty pharmacies, and I have to wait for a bunch of business majors (no offense to business majors, unless you work in health insurance) to decide if my doctor's right about me needing this medication and whether they should cover it.
There are other prescription assistance programs I've applied for, but even at that we're looking at a scary increase in my prescription costs. Since it's a new drug, it's not available as a generic yet, and without insurance or prescription assistance, I'm looking at having to pay $3,000 a month just so I don't hurt and maybe I can get back to some semblance of my old life. And the longer the delay, the more work I miss, so the less able I am to afford to get started on it.
And of course, I said to the call center cubicle lady when she said I'd need pre-authorization for the medication, "Shouldn't the doctor's prescription be authorization enough?"
Thanks. Just needed to vent. And if you're going through similar nonsense, feel free to share. We'll support each other.