CF Awareness Month Day 16 - !*#?$ ups

Thankfully, I rarely experience mistakes or have complaints with my CF team.  A hospital stay always has a few little issues, (like an RT I had a few years ago who would rinse out nebulizers after each use with tap water in the bathroom sink!?!), but not usually anything major.  The biggest  *&#$!? ups (or, as I would call them, #facepalms), I encounter with CF usually tend to come from dealing with insurance companies and pharmacies.

Why??  Why is a medicine I've been receiving for years with no problem, and that I in fact just ordered three months ago during THIS CALENDAR YEAR suddenly not written correctly, or no longer covered, or requires some new prior authorization??

WHY would you agree to cover inhaled TOBI and inhaled Cayston, but not inhaled colistin, which costs 1/5 of the price and is the only medicine that works for me to keep me and you (insurance company) out of another astronomical hospital bill??

WHY WHY WHY would you (insurance company) issue 16 individual checks, totaling thousands of dollars, directly to me to then turn around and pay the home health pharmacy, instead of you paying home health directly, but then never tell that to me or EVEN MAIL THEM TO ME??

WHYYYY home health pharmacy are you still sending me "past due" invoices each month for services you provided over a year ago that I've already paid for (and discussed with you many times), and why are the amounts always wildly different from invoice to invoice when absolutely nothing has changed from the last one you sent???

As most CF patients and caregivers (or anyone touched by chronic illness, I imagine) will likely tell you, then amount of time you spend on the phone dealing with insurance and pharmacy issues can honestly feel like a part-time job.  I cringe deeply every time I get a "wrong" bill in the mail from someone, or a "claim denial" letter, because I know the headache and amount of phone time waiting ahead to get it taken care of.  It's extremely frustrating that the system appears to be so inefficient.

But, I feel like I would be a huge ingrate if I didn't also state that I am so very grateful for insurance coverage and for the ability to get the medications and services I need....even if they cause a huge headache half the time!!  Really, though, sometimes I sit back and realize just how much it takes to keep this body of mine going, and I'm so grateful for a world where what I need is eventually accessible in some way, shape, or form.