Getting Insurance to pay for Ocrevus in children

[LorenzoOilMom]

Does anyone have any tips on how to get our insurance to pay for Ocrevus in our 13 year old daughter? She was just diagnosed last month with MS (blurry vision in her left eye, heaviness in legs). We started her on Ocrevus this month, April 15, 2019 on her first 300 mg infusion, despite insurance rejection (twice). My husband's company is stepping up to help out financially, but we will continue to fight. Any tips, suggestions would be greatly appreciated. Thanks, Cheryl

[jimeka]

Hi Cheryl, I do not know about your insurance scheme for children in the States but I hope and pray that you get the help you need and the Ocrevus halts the progression in your daughters ms. Blessings Jimeka 🦋

[greaterexp]

ocrevus.com/patient/support...

I'm sure you've already contacted Genentech, but I would think they would really want to have your daughter on this for the research value. If no other foundations or assistance can be found, would Rituxan be an option? I don't have any information about its costs, but it's very similar to Ocrevus.

You and your family are in my thoughts and prayers.

[LorenzoOilMom in reply to greaterexp]

Yes, We contacted them but because she’s a minor, not only were they not willing to help get it approved but they refuse to help and cover the co-pay like they do with my friend who’s an adult who has MS and is on Ocrevus. We make more than 150,000 a year so we dont qualify for their other plan for assistance, not that any of that would even matter since again, Reagan is a child. Yes Very familiar with Rituxan, however it is in the same boat- not FDA approved for kids.Thanks for your thoughts and prayers.

[kdali]

I don’t know about insurance. Most hospitals have programs for assistance you can apply for. Sometimes MDs know loopholes. If there’s a forum on another site for ocrevus and kids, those parents/guardians may have some tips also.

[LorenzoOilMom in reply to kdali]

Thank you kdali, I am asking on several forums

[Raingrrl]

I wonder if insurance is reluctant to cover Ocrevus for a minor because the trials were limited to an age range of 18-55? Hopefully you can find a way LorenzoOilMom .

[LorenzoOilMom]

Yes, that's right. it is not FDA approved for children. Ocrevus management is now working to get us set up as an exception to the minimum income rule within their company so it would go to 'care & compassion' fund thing that they have set up. The manager is not positive this will work. The same funded money pays for my friends Ocrevus co pays of about $6,000 so it there is zero out of pocket for her. Otherwise it is $65,000/year.

[greaterexp]

mscurefund.org/pediatric_ms

nationalmssociety.org/What-...

stonybrookchildrens.org/spe...

usnpmsc.org/

ucsfbenioffchildrens.org/cl...

childrenshospital.org/cente...

I don't know if there would be any helpful info found in any of these sites, but wondered if a pediatric MS center would have any more ideas for you in getting help with treatment costs, etc. It's worth a call, perhaps.

[LorenzoOilMom in reply to greaterexp]

I will check those out thank you

[Hooverd65]

Contact Ocervus, they are doing SO MUCH to help me with it. Any insurance company who denies you is full of it. My contact with Ocervus told me since it's the ONLY FDA approved I shouldn't be denied.

I wasn't..... its covered.! The only thing now is the infusion center and pre-med for me to work with or around.

Do NOT take no for an answer !!

[LorenzoOilMom in reply to Hooverd65]

Thank you, HooverD65! We actually have been working with Ocrevus but soon as they found out she was only 13 years old they refused to help us in anyway shape or form. they will not even help with the co-pay which is shocking. I have a girlfriend with MS on Ocrevus and they will even pay anything that’s out of pocket for her so she doesn’t have to pay a dime. It’s a cruel world this MS drug world. I even have connections at Ocrevus. We will not give up we do make more than $150,000, so we don’t qualify for any of that kind of assistance. We have escalated to management at Ocrevus but we are not getting very far. Additionally, we have talked to several MS pediatric hospitals and they haven’t given us much direction either about what tricks have worked for them. She is the youngest in the country on Ocrevus.