I am… lost… scared…livid… frustrated…
I have been on Orencia INFUSIONS (that’s when they run an IV into your arm and deliver the meds in the infusion center) for eight years (a little more than 8). EIGHT YEARS… eight years… Six and a half of those years has been with the same insurance carrier… before they got acquired by a drugstore chain… one I’ve had issues with before because my stupid doctors refuse to write my prescriptions in the way the drug store chooses to be able to fill them… and yes, it is THEIR CHOICE to not be able to fill them the way the doctor writes the scripts.
Yesterday I got a letter in the mail telling me that my infusion (the one that was supposed to be tomorrow) was denied. The decision was made in August (woman on the phone let that little gem slip), the letter was written September 8 and postmarked September 9 in Arizona. It took six days to get to Ohio from Arizona.
To start with… it took six days to get me the information that the infusion that I start to really need by four or five days before the 4 weeks are up would be denied… it was supposed to be 9/16. It’s not yet cancelled but it probably will be today because… yeah…
The USPS couldn’t get it to me in less than 6 days. Good thing they are being way more efficient now that we have that shiny new head of the postal service… sigh…
I called… I called the clinic to see what they could tell me… they are working on it. THEY sent the follow up paperwork a week ago when they got the notification that after 8 years the insurance company thinks maybe I should just do things differently now.
I called the insurance company.
I got a very nice man that commiserated with me, but who had to put me through to the mega drugstore chain who owns them and who decided that suddenly they need more information.
At that point I became a very stupid four year old who needed to be patronized. The woman on the phone explained four times that they need more information. More papers need to be provided before they can decide again whether or not my meds are justified. After I got pissed and told her that I’m not a stupid idiot and that I READ on my letter that the doctor needs to provide more information and that, no, indeed, I did not need her to read me the letter again telling me that they just need more information and that I can file an appeal.
I snarked at her. I snarked hard.
She finally coughed up the information that the denial is typically because the doctor hasn’t prescribed the maintenance meds in such a way to ensure a 90 day supply… of IV infusion meds… that get administered in the clinic every 4 weeks… and have been for 8 years.
I can file an appeal.
That will take 15 days for the first level… then they will send a letter… which will make it 22 days if past history is anything to go by… letting me know if it is approved or again denied… at which point I can again file an appeal… and another three weeks later (that makes my 4 week infusion at worst 10 weeks out unless it is completely denied then suck farts old woman).
And all of this came two days after I watched someone dear to me drink a Pepsi… She has RA. She is finally (after several years… after MTX and plaquinil and enbryl and weaning herself off of 7 years of prednisone) pretty much controlled. Her hands aren’t working “right” any more and she has to pick up her Pepsi bottle with two hands to drink it because she can’t physically pick it up with one hand any more.
All of this while I sit and examine the nodules on my fingers that so far aren’t getting any bigger.
All of this while my fingers and toes are feeling like someone has poured hot ground glass into the finger joints and the joints where my toes connect to the big part of my feet.
All of this while hospice.
All of this while trying to hold it together
All of this… all of this… all of this…
And you know, <sarcasm> stress certainly doesn’t make any of this worse and it certainly doesn’t trigger a flare and it certainly doesn’t make me fall apart</sarcasm>.
I have to take walks with bear. It means too much to be able to push his chair all over the neighborhood and spend evenings out and about together. No matter what it takes, I have to push him on our walks. No matter what it takes. Time is so short and so precious… I have to… we have to… no matter what. What if the last walk was the last walk? What if… what if…
I went through this last year with Actemra, All of a sudden you had to try at least embrel/humira and xeljanz even if you were already on it like I was for 7 years. Like you I found out the day before, I had called insurance company and our Benefit advocate company at work. I kept checking the “clinical” side of Insurance website and noticed a few days later that the Actemra change in benefits was now TBD instead of Oct 1. Called dr’s billing office and they called insurance who now just required a pre-approval for Actemra. So was able to get my infusion. The very next month it happened again! This time, I ended up going through my HR department at work who engaged our Benefit advocate company. And was able to get it approved. But this is just ridiculous, it takes so long to find the medicine that will work for you and then insurance just tries to take it away.It should actually be illegal for them to act this way.
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It’s not like getting the meds make it such that we can better tolerate the BS… of not getting our meds
This happens almost every year to me in one way or another. I would dig in at the doctors office. The doctor handles this almost every day. It will be OK, now it will take 3 weeks, but it will be OK. 🙂
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