Cost of Riluzole

[vltsra]

My husband and I are debating changing his health insurance as of 3/1/16 from Kaiser to Blue Shield. One of the reasons I wanted to change it was to give him access to a better doctor and the best care possible. However, at my suggestion, he ordered Riluzole at Kaiser and it was only $30 for 200 pills. Does anyone have Blue Shield and have an idea what the cost of the prescription would be under this plan? We are trying to make the decision, have already been approved by Blue Shield but haven't cancelled his Kaiser yet.

V

 

[Nikki J]

I am sure it varies by the plan you have even if you compare blue cross of CA. The formulary should be on line. You can see if it is specialty ( it is with blue cross of MA which I used to have). If your plan has the generics divided into 2 tiers which some do now you should see that. Once you know those things you can look at your plan documents which also should be online and see. My experience with blue cross was they had a great formulary but riluzole was specialty and I always had to pay the monthly copay because of that ( never the 3 month for the cost of 2 months that nonspecialty drugs offered). This year the blue cross I used to have has a higher copay for all specialty drugs even if generic which is new. California blue cross may or may not have gone that route. If you have to use a specialty pharmacy google the choices. I did not and it was a mistake.

 

[vltsra]

Thanks Nikki, I will take a look and see if I can find a cost. I appreciate your response.

V

 

[lgelb]

As a maintenance drug, mail order cost may be less, also, so after you see how it's classified in terms of formulary tier, look at your summary of benefits to see if that's the case.

 

[vltsra]

Thanks Laurie. I was worried it would be prohibitively expensive if we changed plans at this point. It seems like every decision we have to make now is difficult.

V

 

[gooseberry]

We have aetna pos in FL. We pay $63 for a 90 day supply.

 

[vltsra]

Thanks Gooseberry. I did check on the Blue Shield website and it looks like Riluzole is covered. I really wanted my husband to have access to the UCSD system as they are so much more knowledgeable and actually have an ALS Clinic (as well as a NMD specialist with compassion), unlike Kaiser. Now he is having second thoughts.

 

[alligator]

I had BC/BS but it doesn't matter. every region and employer has their own negotiated price. The drug itself was almost $1000 dollars but I did get it for $30 with a physician override. Honestly, the drug might get you three months more. The side effects sucked. There is a reason it is not very popular.

 

[vltsra]

Alligator, we are trying it for now. He has been complaining of fatigue but so far he has not had stomach issues (which are always of concern to him). I also have read that it may slow progression, especially if started early, which is why I have encouraged him to take it. We will see how he does.

V

 

[AKjo]

Hello V, I just read your post about Riluzole. My husband was on it for four+ years without any side effects. He quit taking it when he was trached and put on a ventilator a little over a year ago. I know some folks expect to "tell" the difference when they are on it, but as I understand the effects are really not something you would notice, but it is supposed to lengthen the time you have before a ventilator (or the alternative, death) occurs. Gary's progression has been steady but pretty slow when compared to others. Who knows if the Riluzole helped or not, but we were happy to try anything available. ~Jo

Are you able to receive private messages yet?

 

[vltsra]

Thanks Jo, I agree, I will try anything to try and slow his progression.

Not sure how to receive private messages...

V

 

[Nikki J]

V if you click on Jo's user name you will get a drop down menu. If you can pm it will give you the option to pm her. If you do not see it then you probably do not have pm ability ( also check your user cp settings top left blue bar that you did not disable that. )If you can not yet pm it will probably kick in soon.
Jo you could see whether she can pm by clicking on her name. Mods can't tell, as we can pm people right away

 

[vltsra]

Thanks Nikki

 

[JimInVA]

We have BC/BS and just ordered a 30 day supply of Riluzole for about $143.00.

 

[vltsra]

Thanks Jim. I just wanted to make certain that it's covered. I really want my husband to have the best care possible.

V