The Ocrevus insurance (UHC) approval saga continues...

[anaishunter]

I mostly need to vent... so you might not want to waste your time reading.

My neuro ordered my 2nd Ocrevus infusion in April. And it's still pending insurance approval (I changed insurance in Feb as I started a new job).

After the order what sent two times to the incorrect infusion centers that are known to not be approved by United Healthcare ( that took about 2 1/2 months), now it's with a 3rd center. I got informed today that the pharmaceutical delivery request was denied because it needed a medical approval first (I can see that). The Ocrevus / genentech care contact told me that the request was made to the insurance company for approval. I was given a reference number # with the advice to call United Healthcare to accelerate the process. I called them but they had no reference of anything, could not find the number I was given.

I can never reach my Ocrevus/genentech care contact because there's apparently a bug in their phone system and his valid extension is always reported as invalid.

Maybe 1 in 10 times I can get a hold of the person who handles the prescriptions for the neuro.

Also today, I got a call from the pharmacy that had received the prescription (which by now had been denied by the insurance) to tell me they could not proceed because the order was made with an incorrect date (it had a 2015 date).

What else could go wrong? Every possible mistake in this process could have been made. I could write a book about this. United Healthcare also happens to be the most expensive healthcare system that I ever had to pay for.

It feels like nobody is in charge, nobody is reachable. When I get them, they don't know anything and can't do anything. Nobody is able to explain to me how the whole process is supposed to work.

My last infusion (2nd 1/2 dose of the first infusion was exactly 1 year ago on July 14th).

I'm lucky in that I'm doing amazingly well. Ocrevus did wonder for me last year and stopped all MS activity. But by now, with the stress of this F*** process, symptoms are coming back starting with tingling. Fatigue is creeping back in. I'm hot and cold at the same time, especially at night.

As said just venting. One day, hopefully soon enough for me this will be over. I do not wish this to anybody.

... and if you have UHC and need Ocrevus approval, I can give you a hint on what to stay on top of.

[jimeka]

You have every right to vent. That is so unfair what is happening to you. I cannot believe that you have basically been denied it. Your insurance system is so unreliable. You would think that once you were approved that it was for as long as you needed the medication. What gives them the right to mess with your life. I hope you get it cleared up soon, but try and stay relaxed, don’t make your ms symptoms worse by stressing. Blessings Jimeka 🤗

[Hidden]

I absolutely hate this insurance run around. I have been through it, but not to your degree. Keep fighting!

[Lilith08]

Ugh! Thanks for sharing. I just switched to United (for Medicare) the first of this month and I was already sensing that they were going to be a pain in the neck. Will have to keep my wits about me. I really hope you can get your Ocrevus sorted out quickly.

[anaishunter in reply to Lilith08]

Lilith08 my advice is to call UHC ahead of time, ask them which infusion center they cover for Ocrevus as part of your plan and be explicit with your neuro and whoever at your neuro office that places the Ocrevus order that:

(1) You have a new insurance that will require pre-authorization and

(2) to use the explicit center that UHC said to use (UHC does not cover infusion given at hospital, you need to go to an external infusion center).

Then it will avoid many of the loops I've been through.

And if you have a patient care contact at Ocrevus/Genentech, also call them proactively to tell them that you have a new insurance. Their system is not always up-to-date.

[Bodega1939 in reply to anaishunter]

I cannot imagine what you have gone through to know this information. What a valuable resource you are United Health Care and getting it to work.

[greaterexp]

How frustrating! I'm sorry about all this. I think most of us can relate, unfortunately. I am so glad to see that you stay with the process and keep working at it, in spite of the frustration. Sometimes it feels as though insurance companies, health, house, or of any kind hope to wait us out so they don't have to pay claims or cover cost. You obviously know that the squeaky wheel gets the oil.

Keep us posted.

[SueAB]

anaishunter, Of course I want to read your posts - you always have such helpful info to share and are a huge part of our family. Insurance companies are the worst to deal with, but many have a patient ambassador to help you with issues like this. Have you looked into this?

[rjoneslaw]

I feel your PAIN!!!! I'm dealing with the finance dept at my dr. I was approved for support was told this twice now I'm being told I was denied. Now I have to write an appeal letter.

I am not understanding why we the patients are constantly being royally screwed by insurance and financial institutions when it comes to our health.

[Bodega1939 in reply to rjoneslaw]

Me, either. I really dislike not being believed when I did not even generate the data pertaining to me. Then, once that is all straightened out, having to beg for results is so demeaning. The VA has Patient Advocates. I have a stellar one right now.

An example of one of the VA experiences I have had is trying to find out why I was having syncope and heart rates of over 120-140 bpm. I still don't know why, but I was unable to actually physically look at my 2 week long Holter results because the VA said "Nothing to worry about". They ignored me when I told them I had had two syncopal episodes and was fearful of driving ...not fearful for myself, but for other people...like those I most assuredly would hit with my car if I fainted and stayed out for any appreciable length of time. My patient advocate has managed to get the strips necessary for me to bring to another cardiologist outside the VA. I have done that.

I am very interested in knowing the cause of this rapid heart beat, the fibrillation, etc. And I wonder if this new "thing" is related to the drugs I take for the AI diseases I have. I used to be (20 years ago now) a long distance runner and my heart rate 50-70 bpm.

Have any of you had something similar to this problem?

Nemaste, Bodega39

[rjoneslaw in reply to Bodega1939]

No I have not

[anaishunter]

I want to start a forum or a blog or something where patients help each other navigating the healthcare insurance nightmare.

My husband is going through similar challenges on his side with diabetes. He is on a newest, more sophisticated insulin delivery program that enables him to get less insulin but UHC wants him back on the basic medicine.

All of this after a super high deductible and high monthly costs.

[Hidden]

Hope it works out for you have been through enough . I agree no was doing there job , no one really cares I feel. Hope it is better now

[Raingrrl]

Sorry you are having such difficulty with UHC and that your next Ocrevus dose has been ridiculously delayed. I heard some bad things about UHC so luckily didn’t have to choose them for my Medicare supplement. Being under 65, I only had one option in Washington State. I do have UHC for my medications and they have jerked me around about one of those. Thankfully it’s not important so I’m just not going to take it.

When I’ve called Genentech, I can never reach my assigned ‘patient navigator’ so I just talk with whomever is available. They make notes on your account so I’m thinking you should be able to talk to any of them.

[goatgal]

Can you leave a complaint with your state insurance commissioner? Seems to me since insurance companies have to be licensed, there should be some accountability (although I know that this is mostly magical thinking.) Vent there as well!

[Momjules]

Good morning

I too have had ocrevus problems .

They never put the drug through the pharmacy .

Instead they put it through as a medical procedure.

I am now in the donut medicare hole and can’t afford my insulin.

Be very careful about the insurance procedures with this drug.

No one seems to care about helping.

I will not get this drug again because of the way it was billed.

It hurt more than helped .

[Sukie427]

I am so sorry for you. I think that all of us have run into glitches and SNAFUs life this with these ridiculously expensive specialty meds and equally stupid insurance companies. Just be thankful that you're not on a Medicare Part D plan.

[Jazzihorsecat]

anaishunter, I am so very sorry that "The "System", is the way it is, you could try to forget Ocrevus & go the all natural route like I & 1,000's of others have not only stopped progression, but totally Reversed it w/ G*D Send Ann Boroch's 2-books, "The Candida Cure",& "Healing Multiple Sclerosis"... Absolute Life-Changers👍👍👍😃 I have never felt more stable, regular & No more pains!!

💐🌸🌺🌼🌻🙏👍This diet & cleanse is very Awesome! You might even thank me L8R! L💗ve ya!💗 Jazzy🌹💜

[anaishunter]

@jazinco I believe that part of the reason I've been doing so great and doing so much better is diet and exercise. I've been on a plant based diet + fish (no sugar, no dairy products, not meat), only unprocessed, fresh, good quality food. I'm diligent with my yoga practice as well.

That said, I would never, never give up on a DMT. MS attacks your brain and it's too precious especially given that there are drugs which slow down progression. At first, I hesitated, given the cost (is my life and health worth $60k+ year? maybe a good diet will do). But then it was really clear. My mon had RA and there were no drug at the time and as a kid I saw her go downhill and in excrutiating pain. I owed it to her to not say no to DMT for MS given that it is available.

[mrsmike9]

Send a letter to whoever is in charge at the insurance company (or at least as high up as possible). They take things more seriously if someone takes the time to put pen to paper. Paint the picture really bad for them. Good luck.

[carolek572 CommunityAmbassador]

I cannot add to your vent, anaishunter because I am in the same boat as you

[anaishunter in reply to carolek572]

once I get a resolution on this (positive or negative), I'll write what I've learnd about the insurance process. Their call center people are also very talented in making you feel like you're the one who did wrong and does not understand anything. I'm mad at them and will consider filing a complaint when this is all sorted out.

[carolek572 CommunityAmbassador in reply to anaishunter]

Don't let them make them feel that it is somehow your fault. Be firm, document the whole thing, with dates that things happened, and keep calling them. Record everything on paper, tell them that they are being recorded and insist that you want them to call you for each and every thing. Keep all emotions out of it. Just the facts. Give them a deadline, like 'I expect an update by 3:00p' or something like that. Get your doctor's office involved, and the manufacturer (Genentech). You will get it all sorted out.

[anaishunter in reply to carolek572]

thank you. Agreed, this is exactly what needs to be done. Not fun, but it's needed to things to move forward.

[IFwczs]

anaishunter, sorry to hear about your troubles. One tip for calling Genentech - don't try to get the person assigned to your case. Just talk to anyone there, they have access to your records.

[anaishunter]

Great news! I received the approval for Ocrevus today. It's an approval for 12 months, so I guess this will have to be done every year....

Thank you all for your support.