argghhh

I can’t even ….! Cc the only thing I can tell you is that Medicare, in your case, will be so much easier. Aren’t you eligible soon? I am never hassled about my infusions. Be sure you have a supplement tho.

Gotcha! Just further fyi- Medicare doesn’t have any so-called “step” therapy requirements. Medicare itself is no hassle no worry. Infusions and their medications are covered under medical, not prescription. Medicare makes the rules and sets prices for supplements across the board so individual supplements cannot dispute any charges IF Medicare pays. Only once have I had Medicare refuse to pay — for a blood test. I appealed but they didn’t listen. But with everything they pay on my hospitals, drs, and infusions, I’m certainly not going to gripe about the $200 out of pocket. None of the drs I’ve encountered have refused Medicare but I know that some do.

The prescription side is a bit if a bummer but there are a few positive changes coming like a yearly cap. But I’ve found work around most of the time using Costco and good Rx, and getting some meds free from manufacturers My monthly meds (omeprazole, statin, my husbands blood pressure med) are all no cost. My thyroid pills are reasonable. UC meds are crazy expensive though. Curious how mark Cuban can sell them so cheap compared to the drug plans. I’ve come to the conclusion that it’s not so much drug manufacturers as the insurance plans and pharmacies that are taking it in. How else can there be such a huge range in price from different pharmacies for the same drug. CVS for instance charged $350 for a med you can buy at Costco for $50 retail. Anywho I digress.

Crossing my fingers for you! I know the stress. Entyvio is supposed to be going to self injectables in the US maybe this year and I’m already starting to worry about that.
My dr said I should be able to stay with my infusion but we’ll see.

Agree with you 200% that this type of situation is stressful & scary. Back in 2012 several of us on oral med suddenly found out it had been removed from production w/o prior warning, also many members using retention enemas had recurrent problems with pharma warehouses running out of stock, right before that issue came up; then around 2015-16 there were even major problems reported in U.S. that involved shortages of infused anti-cancer drugs. So we can only hope for positive outcomes while steeling ourselves for further struggles down the road. Wishing you good luck over the next several days! / Old Hat

Flowers -- I totally missed your last reply! I need to run all the numbers for medicare before I decide anything. Everyone I know who is on it loves it. Before my company switched our insurance I was happy with the BCBS PPO policy we had. Right now UHC has been a real pita. I really hope the med switch doesn't affect me. I would be worried about the self injectable Entyvio, too. Might be more convenient, but hopefully they won't force you to switch if you don't want to.

I called the infusion center today to make sure they got the new orders for Inflectra. Glad I did because the doc's office never sent the new orders to them! That would have been a real mess when I went for my infusion tomorrow. I immediately called the doc and then checked back this afternoon with the infusion center to make sure they got the new orders and they did. They also said they received the new med that was delivered today. I am good to go tomorrow. Just hope Inflectra doesn't rock my remission boat.

Yesterday Accredo called me before they shipped and told me it would cost me $3000. I knew that because that's my max out of pocket. They said they would take care of the co-pay assistance and then they said they would have an invoice with the med when they ship it. I asked them to just send it to me because I will never see it since the med is not sent to me. They said they couldn't do that. Weird. At this point I don't care -- the med will be inside of me tomorrow.

It amazes me how you have to stay on top of all this stuff. Had I not been so persistent the new med likely wouldn't have shipped until sometime next week. Does everyone else have to deal with all of this or do you just wait for them to take care of everything however long it takes?

I had to deal with Accredo in the past and then CVS specialty pharm and I had to call over and over again to get thing’s expedited. Now I just go to infusion center and they get the med for me. I pray that there is not rock in the boat when switching to Inflectra. I would be nervous as well. I’m sure you will be fine as you are just maintaining remission not obtaining it. Good Luck CC

Insurance....aaaaccckkkkkk!! I know we really...REALLY need it, but it is so sad that they fail to realize how difficult it is for the patient, who often get worse and worse while they bicker with out physicians. All I can advise is, to hang in there and ask our doctors to continue to fight for us. I shall never understand how our own physicians, who know us and our conditions, can be cast aside in the process of an insurance company deciding our care. Just seems a bit...insane. Never give up and best of luck to all.

CCinPA,
I'm sorry you are going thru this. Very glad that you did get your infusion and it went fairly well.... although that depression....I wonder if it's a listed side effect??

I almost think the insurance companies shared their plans with one another and they are doing this simultaneously. I have a friend that just got the dreaded letter too..

Today I found out my GI is not well (unavailable for a long time...) and they didn't know how long it might take to straighten this out. They are working on it... But I will probably miss my infusion.

I called the insurance company and got the run around. Tomorrow is another day though. Hopefully it will go better.

Crossing my fingers for us all.

Clo

Yikes!!! Insurance rep said it's a fine print item in my pharmacy portion of the health insurance policy that "our speciality pharmacy may substitute a generic'. If the script is written as a "name brand" , and they don't cover the name brand then you have to apply for an exception which can take 30 to 90 days for resolution unless it is life threatening and then it can be expedited. Additionally if it is turned down you are responsible for the cost of the drug. And it does not count towards your maximum out of pocket expense.

There's some confusion on if I am responsible to the speciality pharmacy or to the infusion center... Although they think it would be to the infusion center. I am waiting for infusion center to call me back. When I did speak to the young lady that answered their phone she said they were really scrambling because they had several patients that were in similar situations.

I called back and advised speciality pharmacy that Remicade is listed as a medication available thru the speciality pharmacy...it's on the list. That my doctor had not authorized a change and he has not received a request for that change. She said she's sending me a new updated list. I'm so frustrated. I made my insurance decisions based on the list I received in December good Jan 1st.

The rep said they are all working on my case and that she thinks they will allow Remicade this one last time but they are switching me...but this was not guaranteed and she could be wrong. She has to research and call me on Monday. (My infusion is supposed to be Tuesday).

Next year I hope we can schedule my infusion for February so I have more time to work the issues out. I should have started In 1st like I usually do but I got lazy.

Clo

I was hoping things went well today! Sending you positive thoughts! I’d be worried too but I bet you’ll be fine!

CC, back when I started Remicade (2004) it was done at the hospital. Infusion centers had just started doing Remicade infusions, my dr was not onboard with them back then. The hospital billed my insurance between 10k & 12k. The higher end was 10kg every 4 weeks. Insurance paid a little over 80%. One vial of Remicade was 4k & that was going rate back then across the country. I am curious now how much 1 vial is billed.

CC,

Thinking of you and hoping that you are doing well after your infusion.

Clo

Glad to read that you're doing ok so far, CC. Hopefully the worst of your switch-over is now behind you; the insurers tend to make any Rx change into The Pits! Reminds me of that old maxim "What doesn't kill you makes you stronger." But they can really wear us down with all the worries they cause periodically over their coverage decisions. / Old Hat