Insurance denied Rilutek

[joni51]

We have BCBS and they will not pay for Rilutek. They say it is not covered under his plan. Does not matter that we are paying $525 per month for me and him to have ins, and doing that on unemployment. Does anyone have any suggestions on getting the drug at no cost? Somedays I just get so mad and frustrated! I just want things to be normal again, and here I sit crying once again. I just want to put that smile back on his face and tell him he is going to be alright, and I can't seem to get anything done to help him.

 

[TedH5]

I have read that if you contact the drug manufaturer directly they will provide it in "harship" cases at a deeply discounted price. I know this does not help you either but I also read recenty that the FDA gave the green light to begin manufacturing a generic version of Rilutek. I am sorry you are going through this. This is what gives the insurance companys a bad name. I hope you are able to get this resolveget help through a different avenue.d or

 

[Miss]

I have BCBS network plan S - it is covered. A friend here has a different BCBS plan, and it's covered under hers, too. Double check that and ARGUE. BCBS tried to say that the only Dr. here that deals with ALS wasn't "in network" even though every single neurologist in the tri state are sends ALS patients to him. It took 7 months, but we won the appeal, and he is now covered as an "in network" doctor.

 

[Polar]

Personally I stopped take it after reading the complete clinical studies ..
My insurance didn't question paying.
I personally just felt that the risk of liver failure out weighed the possibility of slowing progression a couple of months in 30% of those in the studies..
Same went for when they added Lithium.. I found that it really depressed me .. As it turns out that proved to be a non-effective treatment anyway.

 

[Jeannie]

i would absolutly contact the manufacturor and see if they are willing to help, that is what we did for my mother in law and they did help. Best of luck to you

 

[brooksea]

RCC Program Details | RILUTEK

Go to the above page. There is a phone number to get help regarding reimbursement and insurance benefit determination.

I have no experience with Rilutek, as my husband decided he didn't' want the prescription. Good Luck!

 

[joni51]

Thanks CJ< I already called there # and talked with someone Tuesday, supposed to send me info and some kind of card. Jeannie, Thanks going to do that, Missy there is so much red tape, and you feel like you have to jump through hoops to get something going. Ted they should have some kind of generic because the price of it is ridiculous!

 

[rkyoung]

A bunch of criminals, in my opinion! Hang in there, you will win. It just sucks that first your world is falling in and then they want to twist the knife in your back. Been there, done that!

 

[kelly]

Joni..I am so sorry to hear this infuriating situation that I know all to well. Keep fighting...as difficult as it is dealing with insurance companies..they can not deny the only FDA approved ALS medication. When Andrew was first diagnosed it seems like the fights were never ending..more stress on top of already dealing with a brutal diagnosis. I know that if you google NORD there is a program that helps with rilutek. When we went on medicare we started the application process for NORD...because the cost of Rilutek is so ridiculous we were in the gap period within two months of our prescription plan. Anyways, point being...my ALS support group friends were amazing and we were given 6 months work. Now, I know it is not ethical....but we have to do what it takes! Sorry..started to ramble...I just sooo feel your frustration. Let us know how it goes.