Rilutek cost

[Concerned407]

Correction: I was told by the Pharmacy Assistant at CVS that the Rizoule was almost the same price as Riloutek (over 2,000 dollars a month) According to Humana, the cost to them of the Rizoule was 577.

 

[djssmith]

I just picked up my Rilutek and it only cost $120 versus $2,100 the prior month. Is now available as a generic.

 

[quinete]

I just got my new insurance card the other day & went to refill my 90 day prescription. I about fell out of my wheelchair when the druggist told me that my insurance would no longer cover the Rilutek and that it would cost me $6000 plus change for my 90 day supply. I politely declined. She told me that the max my insurance would cover for a generic is $1500. A call when I got home to the insurance people did give me some hope that they may cover it, they want some further info from my Dr. I hope that they can get it sorted out.

I'm not really sold on the drug but I have been on it for 2 years now with no side effects (besides lightning my wallet) and have so far had a slow progression. Don't know if it is because of the medicine or not, but I'd hate to give it up and then find that it was helping me.

You made me laugh to read your comment as sad as this situation is!

Quinete the originator of this discussion thread.

 

[quinete]

The joke about riluzole (brand or generic) is not whether it works or not. It is the price, which doubled essentially when the the drug was purchased by Covis. The ludicrous situation is that the generic and brand versions are presently only $200 apart (on a $2,000+/month supply). I think it is a matter of price fixing. Everyone should be furious about this.

Many people don't take the drug. Some cannot safely take it. Others think it may not work. Many think it is not worth the cost.

My husband and I have never encountered a neuromuscular specialist who discouraged its use. They prescribed and insisted on its use (when my husband initially demurred, thinking it would only extend his life 3 months). Different ALS populations were represented in the earliest trials for Rilutek. It is likely more efficacious for some patients than others. The point here is: use of the only drug available for ALS should not be inhibited by price!

My husband was formally diagnosed in March 2010. His liver is fine; his progression is slow. Many of our decisions now are guided by prudence and logistics rather than rapidly cascading symptoms. We have to give some of the credit to Rilutek.

We are fortunate that we can continue to pay for the drug. We will continue to do so while we wait for the next better thing. In the meantime, I feel nothing but contempt for the pharmaceutical companies playing their games on the backs of desperate families.

V

Finally someone has shown the anger appropriate for the issue. Although one might find that government regulations rather than the generic drug company itself in this case contribute to the costs of drugs coming off patent. Covis might argue that they must recover the price of the FDA submission and necessary regulatory testing etc for the generic, as well as the cost of purchasing distribution rights from Sanofi for both the original and generic versions. But again this is a shameful way to treat the ALS population who has little hope other than this marginally effective drug. Clearly many people do not have the resources to pay for Riluzole. Someone should bring this to the attention of the media. We have a lot of money raised for ALS but funding falls short for some everyday needs of real patients. I believe everyone should have access to this drug who wants it and that would be a worthy goal. I am aware of programs that supply drugs for individuals without resources but the bar appears rather low for inclusion of all that may need help, especially in light of recent cost hikes. Just some food for thought.

 

[Concerned407]

I just picked up my Rilutek and it only cost $120 versus $2,100 the prior month. Is now available as a generic.

what pharmacy did you get it that low?

 

[djssmith]

My price for Rilutek went from $2,300 in June to $120 this month due to a generic version becoming available.

 

[canmark]

I picked up my first prescription for riluzole today. It's a generic made by Apotex. My insurance (through my work--although I will be going on disability leave soon) is paying 80% of the cost. I paid $297 (Canadian) for a 3-month supply ($100/month). If $297 represents the 20% the insurance does not pay, then that means the full cost $1500, or $500 a month. I had been told by somebody that it could cost as much as $600-700/month, so perhaps the price went down with the generic.

I will have to get monthly blood tests for the first 3 months to see if the medication is damaging my liver--in which case I would discontinue taking it. Otherwise, so long as the insurance will pay 80%, I plan to keep taking it.

That said, I can understand why some people choose not to take it.

 

[canmark]

Is there a way to edit our existing post? I couldn't figure out how to do this so I'm making a second post.

I found this on the Apotex (US) website: Riluzole
New product launched on June 19, 2013.
Riluzole Tablets, 50 MG, 60 TABLET (BOTTLE) - Apotex Products: United States

On their Canadian website I found a price of $441.78 for a 60 tablet pack (wholesale price?)

People may want to investigate this generic version, if the name brand (Rilutek) doesn't match the price.

 

[Concerned407]

I spoke with Covis Pharmaceutical Patient Assistance program. They were very helpful.

 

[Hopefully]

Hi everyone:
My good friend's brother was diagnosed with ALS in China Shanghai. His doctor told him that he should buy Riluzole in US or CA for higher quality and lower price. She is very sad now, so I want to help her and her brother. I am working in Chicago now. But I was told that I must have prescription by US doctor to buy medicine in pharmacy. It's can't be accepted any non-US prescription or translated prescription. So I am rush to know any information to buy this medincie in US with China prescription. Is it safe to buy it online pharmacy? Is there any possible transmitte China prescription to US one. I will be very appreciated if somebody can help us!
Best regards!

 

[Polar]

I'd be willing to pay for a treatment that has been proven to work.. Haven't seen one yet :-(

 

[edepa]

We were paying from $700 to $900 per month for rilutek as we progressed into and through the infamous donut hole. Then came "catastrophic coverage" and pay 5% of the 'cost' whatever that is. In our June refill our cost share was $96, implying cost of $1920. Then with last weeks refill our cost share was $36 and we in fact received the generic version of riluzole. This implies full cost of $720 since we pay 5%. Of course you can never tell how the insurer is doing calculations but it seems the cost dropped from $1920 to $720.

 

[ECpara]

Our insurance covers Rilutek which costs $60/mo. Now CVS has switched us to generic Riluzole at a cost of $12/mo. My husband's progression is quite slow. His doctor told him bulbar patients tend to respond better to it. Who knows, he's staying on it.

 

[Janie H]

I take the generic riluzole, rilutek cost me $460.00 with insurance, riluzole cost $15.00 with insurance. No one knew that the generic was out in June when I was diagnosed.

 

[vlcare]

My husband is a Medicare D patient. During the last month of the donut hole, we paid over $1,000 for Rilutek (our 1/2 share of the "retail" cost.) As we were emerging from the hole, the generic came out. So we obtained a new prescription for the generic, which we expected to fill in August. We had been told we had to have the new prescription AND prior authorization in order to obtain the generic.

Before filling the generic prescription, we checked with the drug provider, and we were told that if we continued with Rilutek we would pay $250+/- in August. If, however, we filled the generic, it would cost $489.00. We were told that's just the way it is. The provider is SilverScript, a CVS company. So who was benefitting here? Needless to say, we declined the generic and continued on with Rilutek.

Vicki