Medicare has refused to pay for the drug Rituxan since it’s not FDA approved for this condition. I’ve had a series of four infusions and my condition has shown remarkable improvement.
Does anyone have any experience with filing an appeal to medicare/
I don’t know about fighting Medicaid, but I do know that sometimes the company that makes Rituxan will give it to certain patients for no or a reduced cost. If you go to the forum www.itppeople.com and look on the Treatments board and search for Rituxan you should be able to find out how to do it, but if you can’t find it, let me know, and I’ll find out for you and post it.
Thanks jillybean, I’ll give it a try.
Arvid
My insurance company also denied the Rituxan treatments since it has not
been FDA approved for AIHA (I was not on Medicare at that time.) I called
the company that makes Rituxan and they have a program (SPOC - Single Point
of Contact) that will help fight the insurance company, then if that doesn’t
work, they have another program that will help pay for the drug if the
qualifications are met.
Here are the numbers listed on their website -
http://www.biogenidec.com/site/022.html:
RITUXAN Customer Service
Customer Service:
800-551-2231 - 7:00 am - 5:00 pm (PST)
Medical Information:
800-821-8590 - 8:00 am - 5:00 pm (PST)
Product Safety/Adverse Events:
650-225-7541
24 hour/7 day message line with pager, 8:00 am - 6:00 pm (PST)
Single Point of Contact (SPOC) Reimbursement:
888-249-4918 - 6:00 am - 5:00 pm (PST)
Since the drug company tried to get my insurance company to pay and they
still refused, the doctor’s office is suppose to be reimbursed or at least
have replacement rituxan sent to them. It was several months before the
doctor’s office received the replacement, but they did get it. My insurance
did pay for the administration of the drug.
I wish you all the luck in the world.
Faye Price
My insurance company (premera blue cross) did not want to pay for the retuxin either. I was in contact with the manufacturer (the info that Wanda posted) through my dr. Finally after many letters and seeing my medical records they agreed that it was medically neccessary for me and agreed to pay. Persistance! It took over a year for them to approve it.
Lori
Arvid,
Just a word about the splenectomy. I had my spleen out in Sept, 2005, and since that time I have felt better than I had in years. I had a lot of problems with the surgery, but not the part with the spleen. Its a long story. I was taken off prednisone while I was in the hospital and haven’t been back on it for AIHA since. I have had to take it a couple of times for other things. It seems that is the drug of choice for many things. I wish you luck. Faye (wanderingwanda)
Hi Wanda,
Thanks for the information and I’m sorry for the delay in getting back to you.
Since we last spoke, I filed an appeal with CMS. It took them 60 days to respond but thankfully they approved the Rituxan treatment.
It’s been six months since the last treatment and I’ve been off prednisone for about two months. Prior to that I was taking 2.5mg every other day. Three days after the Hemotologist took me off that I could tell my hemogloblin was droping. It went from 13.7 to 12.4 in one month. Im due to see the doctor on the 23 and hopefully it will remain stable or better yet improve.
I have no idea what the next step will be but if he talks about removing the spleen I think I will object. From what I read spleen removal has a cure rate of about 30% and the side effects could be worse than the AIHA.
Thanks again for your information and your concern. God bless you!!
Arvid
Count me as spleenless as well! Or asplenic, if you want to be official. I had mine out in 1995 for a different condition, Immune Thrombocytonpenia Purpura (a platelet destruction disorder), and then I went ahead to develop AIHA in the spring of 2006. So it didn’t solve either of my autoimmune disorders - however, knock wood, I’ve never been overly sick due to having no spleen. In other words, I still recover like a normal person.
However, personally, for me, if I had it to do over again, I would keep my spleen, as I still have trouble with both ITP and AIHA, and I still have to do Prednisone anyway. So it didn’t do me any good. I do know of one person who it did put in permanent remission for their AIHA, but I know more people who it didn’t work for. I’d explore all other options first.
Jill