Frustrated lurker finally posting!

Hi everyone! I’ve been reading for awhile and finally decided to come out of lurk-dom and post. I’m entering my 20th year of dealing with the MS monster and I have kinda hit a wall of frustration. I was very lucky for the first 15 years and had a “normal” life running 5k’s with my daughter, etc.

Fast forward to 2017...I finally left my job, started walking with a cane, and felt like I was losing myself. After much research I decided on Ocrevus with my neuro’s approval. I completed all the bloodwork, MRIs, and baseline mammogram and even had my tour/consult at hematology. All good to go, right? Nope...my insurance denied me! Now I’m going through the appeal process but that’s going to be at least another month and if it’s denied again then it could go another 3 months. I don’t know what I’ll do if this doesn’t go through.

Btw, I’m Secondary-progressive and JC+

I would appreciate any words of wisdom or any experiences fighting your insurance, especially regarding the Ocrevus. Thanks for reading!

[ssdw1958]

Hi I’m sorry 😐 you have the MS monster. Now another Ocrevus I am o it I have my 3 visits under my belt. You need to call Ocrevus the company personally to see what they can do for you. They may be able too work with your insurance company. If you don’t have the phone number I’m sure your doctor does. Try that I hope that works out for you.

ssdw1958

[Kenu]

Try MS One on One they can also help with insurance. Make sure neurologist and family doctor are on the same page and get referral from both. Document everything, times, who you talk to, etc. It helps a lot to keep track. Have you done any other DMTs🤷🏼‍♂️. That helps to if you have. I did my appeal in writing and on the phone. My neurologist also did the same and the appeal went straight thru👍 Good luck and hope it works out well for you. 🙏😉🐾Ken

[Fancy1959]

Luckymomx2, it's Fancy1959 and I'm a lucky mom times 4! I feel as if we could be twins. I'm also secondary Progressive have had Ms for just over 20 years or so they estimate, left my job about 5 years ago due to my disability going wild, and I am also on ocrevus.

To start with I would like to officially walking you to this chat room that you been stalking! If you haven't figured out yet let me point out that you have found a safe place to come sure insurance, like you just did, seek information, or simply speak to others who truly understand. And again I'm sure by now you realize that this chat room is full of very positive, kind, and compassionate people.

I realize first hand how exorbitant the cost of ocrevus is! Here is the good news that I found out and I used. The drug manufacturer of ocrevus has a copay assistance program. Talk to your neurologist office and they should assist you in signing up for this. Then there are several nonprofit organizations that will possibly be able to provide assistance with the infusion itself. So don't give up hope on ocrevus, just keep digging and asking for assistance any place you can. If your neurologist office can provide you with the information to assist you just post again and you get it through the grapevine here.

Until we speak again please take care. I'll look forward to getting to know you better. The more we interact with each other the quicker we will get to know each other. I am certain there is much we can learn from each other. You remind me so much of myself it's scary! But the good news is we are both here, fighting this monster some 20 years after if it invaded our bodies, and making the most of our lives. And always remember that together we are stronger! Fancy.

[JeanieU]

Hi Luckymomx2 - welcome, although I'm (always) sorry to do so. Ugh - what a pain the insurance company is being. Many (many) years ago I worked for an insurance company (as in decades ago) but I do remember that the squeaky wheels got the grease. So, what I mean is, call the insurance company often. Write down the date, time, who you spoke to and any notes about the call. Be polite (after all, the people answering the phone are minimum wage earners doing what they're told to do), but keep track of each conversation. I would call every 3 - 4 days. Eventually you'll either (a) wear them down so they pay you or (b) get someone on the phone who will tell you exactly what you need to do to get approved. It's such a hassle - I'm so very sorry you're dealing with this.

[Hidden]

Thank you all for the responses. Just to clarify, I did have my neuro’s approval and I submitted all the forms to Genentech/Ocrevus before this whole insurance nightmare. Surpringly I’ve never received any correspondence from Ocrevus, even promotional emails like I still get from Biogen. I actually asked my neuro’s office if I should reach out to Ocrevus and they said no. They are handling my appeal as well—the only thing I have to do is wait for the ins company to send me a consent form. Not quite the process I expected but hoping it will lessen the stress.

To answer one of the previous questions...I was on Avonex for about 8 years from my initial diagnosis. I did so well on it that my neuro at the time (from Johns Hopkins) took me off and continued to monitor my MRIs. All was good for almost 10 years and I loved being off all meds and the side effects that go along with them. I think I was living in ignorant bliss when I started to feel off and knew things weren’t right. I saw my old neuro at JH who put me on 5 days of IV steroids (hated) and Avonex. Well, I gave the Avonex a solid 8 or 9 months when I got tired of not getting any better and maybe even a bit worse plus the fact that I was losing two days a week from side effects. From there I tried a more “natural” route and found a doc that was willing to prescribe LDN. I’ve been on the LDN for over a year and more than ready to move to Ocrevus. Besides being frustrated at this body that no longer feels like my own I’m scared. I’m scared at what the future may hold (there I said it) and if my insurance will ever approve the Ocrevus.

Whew, that was longer than I expected and appreciate those that have taken the time to read it all. ❤️

[Allen5280]

Hidden , I have been on Ocrevus for a little over a year. I had no trouble with it being approved so I don't think I can be much assistance with that. I did start Modafinil this year and my ins did deny that. My Neuro's office handles the appeal and it was approved. It took about a week for it to go through. Hope and pray it gets straightened out quickly for ya.

Allen

[Hidden]

Thank you...you’re giving me hope which can be a very powerful thing!

[greaterexp]

Hidden I'm happy you've joined in the conversation, especially now when you could sure use some support. So many of us have had to deal with insurance issues, and I see all the great advice you're getting from everyone here who has gone through it.

Please come back to tell us how the appeal process is going. You'll be in my prayers for a quick resolution!

[MS_Indestructible]

Welcome to the group, being scared is "normal". You seem to be on your way to finding your new "normal". I think Kenu has some good advice [as do others]. First the thing is the DMD companies want at least what your insurance company will pay, after that they will assist you with the copay. So it is very important to go through the appeals process. My only other suggestion might to consider Rituxan. Ocrevus is a "new"er version of Rituxan, [please read some of my previous posts about Rituxan] Rituxan is used as an off-label for MS. That is why Ocrevus was developed. I was dx in 2007 and just this year I was pronounced stable for the first time after being on Rituxan for a few years. Let us know when your approval is made so we can celebrate with you. Soon your fear will diminish as you learn to deal with Insurance companies and you get used to how this monster affects you. Thank you for your post ~terry