Funding

Hello everyone, I wish you all your best day.
I am kind of lost a bit in all this IP stuff. it's my third time round with the high dose pred and the platelets are dropping again. Sigh...
I had decided after much debate to do Rituximab. It was supposed to start the first of November.
I got a call on Friday telling me that the funding is not going well. Apparently they have asked for more information about my situation. I am supposed to hear more this week.
Has anyone here been denied funding for Rituximab?
If so what then? thanks Sandy Too.

Is your insurance denying it? If so, you can appeal. I have done that and won.

I don't have insurance, here we have the Ontario Health Plan. But this drug is not paid for by the Ontario Health Plan. Sometimes for cancer patients you can apply to different funds that will help pay but I don't think that is an option in this case.
Sandy Too

Oh, I can't help you there. I don't know much about Canada. I do know that some people from Canada have gotten Rituxan with no problem. I guess it depends on the Province you live in?

I am in Alberta and they paid for my Ritux; but my hema also deals with cancer patients so that may have made a difference.
I am now on Nplate and that is not covered but we have a good health plan from my husbands previous employment - the pharmacist at the hospital pulled strings so the other 20% was paid by another program. So I am pretty fortunate in that department. I hope you have some luck but talk to your hema about this - I also found the hospital pharmacist is a wonderful resource.

So glad we have an NHS over here in the UK...not sure how much longer though !!!!

thanks everyone, I did some research last night, I am familiar with some of the programs that run to fill the gaps OHIP doesn't cover because of my Mother's cancer. But many speak of cancer drugs for cancer only. But there is an Exceptional Access Program that is a case by case program. only I cannot seem to find any information that shows any drug in the past being given for auto-immune situations like ITP and Lupus.
I am supposed to hear more today. I am so disappointed as my platelets are dropping as we speak and the symptoms are miserable again. I was told that there were no symptoms?? Then why after the third drop, in eight months, am I again so dead tired, my hair is falling out so fast, my nose is bleeding again, I can't stop peeing, I am having terrible leg and foot cramping again, and I hurt everywhere.
Even if it's not the ITP, then it's what ever is causing the inflammation that is causing the ITP.
I just cannot do another round of high dose prednisone.
I just was up and around a bit this last weekend. I got to do a few things after so long, and now I am right back where I was....No symptoms??? Sandy Too

Sandy - the symptoms are probably Lupus and steroid related. ITP doesn't cause all of that.

Speak with your Ontario hematologist about the patient assistance program offered by Roche, the manufacturer of Rituxan in Ontario. If your hematologist works at a hospital then the hospital likely has a person that will help you obtain Rituxan for little or no cost in Ontario. Roche the manufacturer in Ontario kindly and very quickly ( 2 weeks) approved me for obtaining Rituxan, at no charge.

Thanks Sandi, you are probably right. But for what ever reason the lupus seems out of control, thus the ITP. So frustrating.
freedom-45 that is what my hemo is doing now. I had an interview with Roche and my hemo has done the paperwork but for what ever reason they have so far not given the go ahead on funding.
I am hoping that it is just the wheels of progress thing and I will hear any day now.
thanks Sandy Too

Sandy Too - It took a couple of weeks before I had a 3 way conversation with the compassion program, and my insurance (drug coverage). After that they called in less then 1 week to say I qualified. My hematologist said most of her patients she has applied were covered.

Hi i wonder ohip covered your itp treatment or if you need supplement insurance to cover your meds.