Oral Radicava

[lisa g]

Is anyone else experiencing a nightmare transitioning to Radicava ORS from infusions? I am having a problem with paperwork. Right now I receive the medication through an infusion center. Medicare A + B pick up most of the cost my secondary insurance picks up the remaining cost. Now to transfer to the oral it will be a prescription through Caremark CVS specialty pharmacy. I will incur a co-pay which I understand. I was quoted $200.00 for 30 days, $300.00 for a 60 day supply or $400.00 for a 90 day supply. I was told to apply for a grant for the co-pay through Helpwell Foundation. Unfortunately when I inquired I did not qualify.

 

[Nikki J]

I do not take radicava as you know but at clinic my neurologist said approval for radicava ors has been a real problem always refused and requiring appeals which don’t always work Honestly I suspect you are having better luck than many. I know although you have medicare you might have some federal benefit from your job? Do you have a regular part d or something else? Regular d would have a possible donut hole and then put you into catastrophic which I believe has you paying 5% At 12k or more a month that is 600

 

[lisa g]

Yes Nikki I have Medicare and was able to keep my federal employee insurance when I retired. Going to an infusion center Medicare covered the majority of the cost then my secondary picked up the rest. For 2 1/2 years I've paid $0 out of pocket. Changing to the oral form will not be covered under Medicare and will be priced under my secondary insurance. I was switching to the oral form to save the amount of hours spent traveling and sitting at the infusion center. I am still mobile so right now it's not a problem but down the road I'm sure it will become an issue.

 

[HeatherPC]

I was just notified today of the insurance denial (I'm private insurance as I don't qualify for Medicare). The insurance said my AFS scores were not submitted, so hoping my neurologist's office will get things straightened out.

 

[Aaronmandevill]

I’m having issues because apparently it’s not on the Tricare formulary yet. They offered to do infusions but that restarts the whole authorization process and I’m just tired. Hoping houston Methodist is more helpful than Dr. Wongs office as they never get back to me here with Wong.

 

[lisa g]

Aaronmandevil keep being persistant. After many phone calls I think we finally got everything through for replacing the infusions for the oral version. I find out in a day or two if my next cycle will be oral.

 

[lisa g]

Looks like I spoke too soon. Today I was told Care mark rejected my order now my doctor has to do an appeal. Crazy since I've been on the medication for 2 1/2 years. I guess its back to the infusion center until this gets sorted out.

 

[Aaronmandevill]

I found the out of pocket cost is $19,000 per month so that’s probably why the fight is so hard right now for insurances

 

[lisa g]

Like I said before, currently my infusions are $7,950.00 per infusion that comes to $80,000 for 10 days. I have paid $0 between Medicare and my secondary. I have been told by insurance that my co-pay would be $200.00 for a 30 day oral supply which to me is fine if I could save the time traveling to and from the infusion center.

 

[Hal]

I’ve been in the approval process since late June. Right now, it seems to be moving forward with a secondary program that will also cover the co-pay, but I really won’t feel confident until it gets finalize.

Separately, I’m really wondering if the potential side effects are worth the limited health benefits. Anyone have any guidance? If the point is to help diffuse Oxidative Stress … certain dietary changes can also help. Any thoughts?

 

[wmilo]

I've been on the IV form of Radicava for about 4 1/2 years. In July, my neurologist asked if I was interested in exploring the oral form of the drug. I said that I was, and he replied that he would see if I could be approved and that the process had been taking 2 to 3 months.
This was on a Wednesday. On Saturday, I received a call from my insurance company informing me that I had been approved for the drug. (I am on Medicare.) The following Wednesday, I got an email saying that a prescription had been filled for me. I called my insurance company to see if it would change my financial responsibility. After much discussion with them, I learned that the IV Form of the drug is classified by them Under Part B and that the co-pays were included under their annual out-of-pocket maximum calculation. The oral form of the drug is classified as a Part D drug, and the co-pays *do not *count against the annual maximum payment. They did not volunteer this information, I had to figure it out by asking questions. I was told at the time that my co-pay would be $2700 for the first fill of the prescription. At that rate I didn't think that I could afford to change. After further discussion it appeared that after the first month my co-pay would be calculated under "catastrophic" coverage and would be $650 per month, which I thought I could handle. During my last conversation with the pharmacy I was told that the first co-pay would be $650. So patients may see a significant financial difference between the IV and oral forms. (I had the impression after talking to the insurance company that the IV form was more expensive than the oral form.)

Regarding Hal's question about potential side effects versus benefits: it seems side effects can vary from none to relatively severe. You won't know until you start taking the drug. I don't think there's any way measure how your progression would have been had you not been taking the drug. Speaking for myself, I continue to take it on faith that it is having a benefit. There is really not much of an alternative and because it is available, I take it.

 

[lisa g]

Glad to hear that your transitioning to the oral form Bill. I've been taking the infusions for 2 1/2 years. Have you tried applying for a grant to cover your out of pocket co-pay? The Hopewell Foundation helps with the out of pocket costs. I'm still going through the paperwork part to change to the oral form. My IV infusions ran $7,950.00 a day for 10 days. Over $80,000.00 for a cycle was a pretty hefty expense, fortunately through Medicare and my secondary insurance I pay $0 out of pocket. That will all change once I obtain the oral version. Medicare A&B wiil not cover any portion. My secondary insurance informed me that my co-pay will be $200.00 for 30 days, $300.00 for 60 days or $400.00 for 90 days. That sounds doable.

 

[wmilo]

I finished the first 10 days of Radicava 0RS last Friday with no problems. I experienced no side effects, although I had not had any with the IV form either. I did have a couple of takeaways: the process of filling the oral syringe requires some manual dexterity and I believe it would be difficult for someone who's hands were compromised in any way, such as from weakness or arthritis. Secondly, it worked better for me to have the drug administered in two swallows, taking half the syringe contents in each.

The discussion above about cost is a little surprising to me, in that there appears to be so much variation. I was told that for my first fill of the prescription the cost charged by the pharmacy was $13,000. I was also told that it is the filling pharmacy which sets the price, and that it could potentially change from month to month. This is quite different from what Lisa described in terms of the cost. $400 for 90 days sounds like something of a bargain compared to what I was quoted, but the $650 per month I am expecting also sounds like a bargain compared to the $2700 a month I was told initially. I'm not really sure what to make of it all.

 

[lisa g]

Variation in prescription costs are crazy. There should be a one price universal cost. You see the same thing with Riluzole. While I pay $10.00 for a 90 day supply I see people being charged over $100.00. How is this fair.
As for my quoted co-pay for the Radicava ORS I'll believe when they actually dispense the medication.
Glad it worked out for you Bill.

 

[wmilo]

Another development: I got a letter from my insurance company stating that the co-pay I paid was "right according to how the claim was processed", but it seems it should have been $2700 and that I underpaid $2097.
I do have assistance for co-pays but it took a while on the phone to try to explain.

I think I pay $47/month for Riluzole.