argghhh

Oh CC that sucks so bad!!! I want to cry with you! Crossing my fingers that it’s somewhat quickly resolved. When is your next infusion?

CC,

I am so sorry that you are going to have to dance with the 😈😈😈 insurance company. When is your next infusion?

We changed some of our insurance plan this year too. I've been having nightmares since the end of December hoping they didn't mess everything up. They sent out notices indicating they are now changing the "formulary" at our insurance company several times a year. (BCBS) We need to check right before our infusions to make sure it's paid for.

I too fear switching from Remicade. Insurance brought it up but my GI fought them off last year. I've had too many issues so they did let me slide--but--the young lady said they were switching everyone over to the bio similar if at all possible. She and I had a tussle. She tried to tell me they were the same--which I replied if it was exactly the same it would be called Remicade. Then I took it to basics for her... She drank Coke.. (I asked) and I told her she should switch to Pepsi or a generic... After all they are all "colas" and the same. She stopped arguing and said she'd work on it. It took over a month for approval.... And I didn't get that approval letter until after an attorney reached out to them for me. I was scared I'd end up with a huge bill. So I totally understand where you are coming from.

When's your next infusion?

Clo

I am like you in that I have a love/hate relationship with insurance. It just seems ethically wrong that not everyone has access to their required meds. The profit being made off of meds that sustain life should not supercede the importance of a persons survival....

Do you not take generics of other drugs either or is there some difference with biologics/biosimilars in particular?

CcinPA,
I totally agree with you on the meds and switching.

Just a thought, have you ever had any type of a reaction to any medication where you could no longer take it?.

We sent in my old records of how bad I was and all the documents showing how I could take some meds before UC/Crohn's but now can't. I don't know if it helped or not but we were throwing everything in there. I did not want to switch.

Hang in there! Please let us know how it goes.

Sara,14,

On some generic meds I get really really Ill so we had to go with name brands. (antibiotics, skin treatments--which totally surprised me. Who knew rubbing something into your skin could cause nausea??? Hives yes.. nausea--never considered it til I was praying at the porcelain alter and saying bad things about cheap insurance companies. I was waiting for a lightening bolt to hit me in the butt! LOL).

Since then.. I fear switching meds out to generic if I did ok with the name brand. Plus It's so hard to risk going to something that may not work-or work as well--especially when you know you probably won't be able to go back to the original.

Clo

Hope you can get it worked out. I have United Healthcare and that’s why I’m on Inflectra and not Remicade. I know United sent out a letter making everyone switch to Inflectra last year I think.
Im doing well on Inflectra but I hope your doctor can get it worked out for you because I know it would be scary having to switch if you’re in remission. Sending good thoughts !

They are still working on approving Remi, but my doc's office called today and said UHC is requiring that I use a stand alone infusion center. The place I would have to go is a nightmare to deal with. She's going to push to keep me at the same place I have been going to. I had to use that other place when I was on Entyvio and it was horrible. The little rooms were not well lit and the nurse had an awful time starting my IV and one time after a couple sticks she told me that if it didn't work on the next try I would have to come back another day. (This was after the med was already mixed!). They didn't use an IV pump and my 30 minute infusions took over 2 hours. Can't imagine how long my 2 hour remicade infusion would take. I don't know why insurance forced me to use that place when I was on Entyvio. That place billed more and insurance paid more than when I got the infusions at at the hospital.

Nurse today said insurance may give me temporary approval to get my infusion as usual on the 26th while they work on permanent approval.

Such a hassle

I am sorry you are dealing with this. Your patience is amazing! I really get frustrated when stuff like this happens.

I get my infusions at the infectious disease doctors infusion clinic. (Do you have one of those close by? Or an oncologist office can do them) I'm Thankful because GIs "rooms" are not private, they are dark and don't have windows and I just don't like his staff as much as my ID doctor's. They are ok--its just that the ID staff is really really exceptional.

Saying a 🙏 prayer that it goes the way you want.

Clo

Just heard from my doc (he called me himself!) and he said he had a lengthy call with UHC. They agreed to a 6 month authorization to stay at my current infusion center (hopefully they will renew it in 6 months).

But UHC would only authorize Remicade for every 6 weeks not 4. They will approved inflectra for every 4 weeks. Since 6 weeks did not work for me I have no choice but to switch to inflectra. Doc said that he was forced by insurance to move several of his patients to inflectra and they are doing well so fingers crossed that I won't have any problems with the switch.

Curiously, inflectra wasn't the original biosimilar UHC wanted to switch me so ... that was a newer one (starts with an A but I don't remember the name) so my doc at least got them to change that.

When I had iron infusions the place I went to didn't have IV pumps either. That infusion was 3 hours I think, but I think those infusions have to be done really slowly anyway. That was an oncology practice and they did chemo therapy there without pumps. No idea how they did it. They seemed to be more skilled at it than that other infusion place I went to for Entyvio

Recently I looked at the Advocacy section of CCFA Website. It seems that they've been trying to lobby Congress since pre-pandemic years over "STEPS" issues, whereby insurance companies override physicians' Rx choices for IBDers requiring higher level meds. Worth a read from all of us, IMO. / Old Hat

Post Edited (Old Hat) : 1/19/2023 10:00:13 PM (GMT-8)

Old Hat -- is this the link you were talking about?
https://www.crohnscolitisfoundation.org/get-involved/be-an-advocate/advocacy-priorities

Well, my saga continues. Doc's office said that UHC requires that the Inflectra is ordered from a specialty pharmacy and sent to my infusion center instead of the infusion center providing it. The specialty pharmacy (Accredo) requires 2 business days to process new orders. They just got the order this afternoon. The med has to be at the infusion center by 2PM on 1/25 in order for me to get my infusion on 1/26. I have no idea when they are going to ship. I did call Accredo today and told them I would pay for priority shipping for this first order if they can get it there on time. Now I have to wait for them to call me saying it's ready to ship. Well I probably won't wait -- I will be a pita about this. If I miss the 26th I asked my infusion center if I could get in on the 27th if nec and they have some spots I could take. My fingers are crossed that I can get the infusion my the 27th at the latest. Other wise I would have to wait until at least the 30th if they can fit me in.

I am trying hard not to stress about this, but it's difficult. Bad enough that I have to change meds. But now it looks like my infusion is going to be delayed too. I told my benefits admin that I hoped my company was saving a boatload of money by changing insurance because I sure am not seeing any positives -- the premiums are much higher than the old insurance and I am getting worse coverage. She said that she was against the change, but it wasn't up to her.

Will let you know what happens.

Yes, CC, that's the section of CCFA Website I referred to. "STEPS" falls under Access To Care. They list 4 or 5 obstacles that insurance companies typically throw at IBD physicians' RXes when they don't want to provide coverage and force the patient onto cheaper meds. (Including drugs previously tried that didn't help!) That can happen with lower-level oral meds, too, especially involving brandname forms. The insurer will insist that the generic is exactly the same. (Clo's Coke, Pepsi, or generic cola argument!) / Old Hat