I just found out today that my TYSABRI infusions are on shaky ground...well, not really earthquake shaky...more like may not happen shaky. As most of you know, I had been receiving my TYSABRI via my neurologist's office. Well, except for that one infusion in May where I had to get that "urgent" MRI to prove my neck was the cause of my hand numbness and NOT PML...I went to Club Med for THAT infusion. Then, this past month, my neuro's office informed me that I would have to return to Club Med for my TYSABRI infusion because the office infusion nurse had retired...go figure.
So, I received ANOTHER infusion in July at Club Med...within the hospital...assured everything was "right on track"...and I scheduled my NEXT infusion for August there as well.
Today, I was informed Club Med will most likely be billing me a gazillion dollars (like seriously somewhere between $4,000 and $6,000 big ones) for my two infusions there because the hospital is not set up to accept "specialty pharmacy" medications.
Because TYSABRI is so frickin' expensive, my health insurance uses a "specialty pharmacy" to provide the medication to me...an external pharmacy sends out the medication (as a means of controlling cost), usually to my TOUCH certified neurologist's office. Otherwise, I would be billed a portion of the medication if I went directly through my insurance and not use the "specialty pharmacy". That "portion" is itself several hundred dollars...I pay a copay of TEN DOLLARS if I use the "specialty pharmacy". I can't imagine anyone in their right MS mind getting their TYSABRI any other way! $10.00 versus $300-$500? Yeah, even I can do the math on THAT one.
Club Med (I am told) is not set up to "accept" external "specialty pharmacy" medications, yet they DID...TWICE...and now claim "oversight"? OVERSIGHT MY BALD, LILY-WHITE ASS. The hospital pharmacy had to KNOW the medication they received in the frickin' mail didn't come from their usual source!?! But, I...the patient...am the one to blame.
It's not the $4,000-$6,000 dollars that causes me to break out in hives and search local gun shops for a good "deal"...although I DID nearly swallow my back teeth on the amount. Nooooooo...it's the fact I may not be able to AFFORD TO RECEIVE TYSABRI AT ALL. Unless I can find another doctor's office or out patient site willing to accept me on their roster.
Part of me (that evil twin side) is ready to just throw my hands up in the air wildly to my sides in Christ-like fashion and declare, "It is finished". I don't want to BATTLE over this anymore. I didn't WANT to continue the medication in the first place because of the side effects I was experiencing. But now that I've grown USED to the headache/joint pain/fatigue post infusion, I've begun to notice a stabilization in my MS symptoms for the good. I believe the TYSABRI IS HELPING ME...I've embraced the medication...I'm finally feeling as if I am getting my body back.
But at what cost literally? Is my mortgage more important than the medication? I wish, instead of the Biogen label warning on the drug letting us all know we run a 1:1,000 risk of developing PML, they would ALSO add a warning that the medication could result in financial destitution IF YOU HAVE A JOB AND INSURANCE. I thought all this time the purpose of my GOING to my job each day was to KEEP my Gold Card insurance so I could AFFORD the medications that KEEP me GOING to my job...funny how having a job/insurance now does NOT work in my favor...
Hmmm...for having very little to say, I sure spewed a lot here. Guess I'll go to bed and listen to the rain outside. Can't be any more depressing than listening to the negative chatter in my head...