I wonder why they rejected you. I know it is not approved for Myositis but there are proven results that it works for stubborn kinds like you have. I would ask why it was rejected and what the appeal process is. Maybe you just need to try other stuff longer or maybe you just need more justification. Maybe they would rather give you IVIG.

I think calling Genetech is a great idea. I don't know what their criteria is for offering it gratis. I know it is super expensive. That probably has a lot to do with insurance companies being willing to cover it. If it was $10 instead of $15,000 an infusion, we probably wouldn't have to fight to get it.

Good luck! Keep us posted.

Did OHSU submit it or your local rhuemy?? I'd ask OHSU to submit it wtih the documentation they use. I know Stanford did not have any trouble with my IVIG but my rheumy says he does have trouble, so the name and the documentation sent along may have some weight. I would appeal also, you are severely disabled, so it is a reasonable thing to try... Maybe they would rather cover IVIG for you??? I'd get them working on both at the same time, then it might give them the nudge they need!!!
Keeping all involved in my thoughts for success for you.
shawna

Sorry to hear this. Hope your contact with the Company is successful. Last thing you need right now. Best wishes. autumm

My doc got the Rituxin for me though it took almost eight weeks to get all the paperwork done.

I will put in some prayers for you. I am sorry that you are getting the run around on your treatment.

Does your insurance cover a different treatment? I have drug coverage that is a different carrier from my health insurance. You might want to see if your drug coverage works with a particular pharmacutical company. Rituxan may be manufactured at a company that is not a vendor with your drug coverage. Ask your drug insurance about the infusions that are covered for your illness. You could also ask what paperwork you would need to submit for them to cover Rituxan. I hope this will just be a matter of filling out the correct paperwork.

I hope you will get some help that will work wonders for you. Keep us posted.

Hi everyone: I called my neuro at Oregon Health Sciences University, and she said my insurance company was very stubborn. Once I was dx for poly, my insurance dug its heels in and even OHSU isn't getting them to budge. So I'm applying to Genentech to pay for infusions. At least I won't Have a 30% co pay. My Rheumy put me on Imuran in the hopes it starts to bring down the CPK that is climbing again. I found a research paper that said if a patient has mixed symptoms like less fatigue, strengthening muscles, but climbing CPKs it means that there is inflammation somewhere; heart, lungs maybe, and full body CT scan might be in order to pinpoint where. But treatment is the same, add another agent like Retuxin or Imuran. It's just that Imuran takes 3 months added to MTX to know if it'll work. If my cpks get up to 5000, then I guess it's back in the hospital on a saline drip to get them down. My rheumy didn't think she would win the appeal for Retuxin. Neither the Rheumy or Neuro want to do ivig. Arghhhhh.

My rheumy tried for over 3 years to get my insurance company to pay for the rituxan for me. Finally she got Genetech to cover it and it only took about a month to get approval. What i remember about the phone interview was how much was i getting on disability and how long had i been "ill" and what were my chances of returning to work full time and leading a "normal" life. After i talked to them, they then had the doctor fill out some forms. The first time i was rejected, which i ithought was stupid since i met all the requirements, (broke & sick), but the doctor resubmitted the paperwork and i was approved. All in all, it only took about a month. And the approval should last for a year from the first time you get the okay. And on top of that it seems the rituxan is working.

Ok.. this is going to sound weird but sometimes it's about where you GET the infusion. I got rituxan this summer and my insurance said I did not NEED a prior auth. This floored me as my usage was definately off label.

If you can find a place that contracts LOTS of rituxan usage and works with the pharmacy lots, they may be more inclined to let you get it.

Again, I was really surprised...I didn't have to fill out ANY paperwork (I have blue cross blue shield anthem) and neither did any of my MDs.

DO NOT pay for it on your own. my 4 treatments cost $50,000.

Thanks zzz and lacy....this is good info. I'll call the infusion center and see what the skinny is. I'm. Also working with the Genentech Foundation.