Anyone started on Radivica yet? Use this thread to discuss access/ insurance

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diagnosed2016

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Lost a loved one
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Trying to get an idea of when we can expect to start- we have prescription and are in contact with their customer support but I was wondering if anyone here has first hand experience with it now that it's approved and available.
 
I'm aware of one gent on Facebook who has started.

He's not impressed so far...
 
I am not planning to take it but I asked the nurse at clinic last week how it was going. The clinic staff have been working hard to try to get approvals. She said no one had received it through insurance yet there. She also said IVIG which is also infusion and has been around for a long time ( so it has established insurance protocols) usually takes 4-5 weeks for approval. Since radicava is new it might be longer. I have heard on other sites frustration with searchlight but ultimately it is up to the insurance company and some were more prepared with policies for this than others. Good luck
 
On Friday my neuro told me insurance just requested a letter from her for the pre-authorization. We started insurance paperwork weeks ago. It's slow going but slowly moving forward.
 
I've been approved for it by my ALS clinic. Now begins the dealing with my insurance to see if/how much they might be willing to cover.
 
My insurance approved me and I was supposed to start this week. They are finding a nurse to do home based infusions. I am supposed to make sure I can tolerate the drug before they put a PICC line on.
 
They set me up with Soleo Health.
 
Can anyone please post how Medicare has responded re coverage. I called and had a paragraph about durable medical equipment read to me several times. I really don't think they knew anything about Radicava yet.
Also, how do you find out if you are sensitive to it?
If you are getting home infusions, do you get a month's worth in one shipment? Does it need to be refrigerated?
Thanks for any info.
 
We get Radicava from the pharmacy River’s Edge. They sent us the first 2 weeks, which I finished with home infusions by a private nurse we hired. They are expected to send us the next batch this week. I do my 10 days beginning Thursday.
It does not need to be refrigerated.
 
My insurance denied it, without even providing a reason for the denial. My neuro is appealing and also requested a reason for the denial. She said I'm an excellent candidate and they should have no grounds to deny me. She seems confident we will get approved through appeal, but we both worry they are trying to push the clock so it will be past 2 years since my onset and then try to deny on those grounds.
 
I hope it works out for you soon, Kristina.
Do you mind telling what insurance you have? And where you were going to be infused? It looks like we live fairly nearby, I'm in Sterling, seeing doc at Lahey.
 
Hi Dgnk, you are not too far from me! I'm in Grafton. I go to the UMass ALS Clinic. I have BCBS, but it is out of state which makes things a little trickier. We have the right to use any BCBS PPO provider in MA, but sometimes at first glance things get denied and we have to force them to look closer at our plan and see that. Not sure if that out of state confusion is part of the issue here. We also have separate drug prescription coverage so my neuro said BCBS may be denying because they consider the drug itself the responsibility of our prescription drug provider. I will definitely update as we go through the appeals process. My neuro seems confident it will be sorted out.

So my neuro said that they will have me come to the hospital for the first week for infusions, it would be the same building as the ALS Clinic (UMass University Campus, ACC building). If I am tolerating it well they will put in a PICC line and send a nurse out to teach us how to do home infusions. After nurse has spent a week or so training us we will be doing it at home on our own and drug will be delivered to the house. After 3 months if I still want to continue long term they will replace the PICC line with a port.
 
What a Nightmare! Searchlight boondoggle

If having my wife being diagnosed with ALS in July (after being misdiagnosed for a few months with other maladies) isn't bad enough, the freakn' nightmare of trying to get her the new medication Radicava seems almost as bad. I can't believe the incredibly slow, inefficient and ridiculous process that it takes from the doctor -neurologist to write the prescription to actually get this "miracle" drug. I (as well as my wife) just plain don't get the procedure. We've given every scintilla of information to the clinic, doctors, and insurance company and yet they all still claim they need something (what that is, is anybody's guess) else from somebody else. If it wasn't so pathetic it would be comical. A this point we were actually informed that we (the ALS patient) needs to find the infusion center that can administer the drug. You can't be serious? Its insane and just plain ineffectual. I'm very disappointed in the clinic's ability to get my wife the help she needs so desperately. A very sad state of affairs for some of the most medically needy patients on the planet! Sorry for the rant but just telling it like it is. I sincerely hope that our experience is the exception and not the norm for ALS patients. They deserve better-much better!
 
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