How long does it take to get setup with Radicava infusions?

DW96

New member
Joined
Jul 15, 2021
Messages
4
Reason
PALS
Diagnosis
06/2021
Country
US
State
IL
I was diagnosed the last day of June, in July I decided I wanted to try the Radicava infusions. Everything got started with my neurologist office, finding out if my insurance covers it etc. It does, then they contacted radicava, and then Searchlight in case I need to have any copays covered. Radicava has called me, said they had to set me up with an education person. I talked to her a couple days ago and she said she would setup a time to meet with me virtually. The date she gave me today is like 3 weeks away just to tell me about everything involved?
I have already been waiting well over a month to get things going and after this then I would still have to get the Radicava ordered, I still don't know if I am approved for in home, or infusion center/hospital. I would still need to do 2 treatments by IV before they put a port in.
I'm wondering how much longer I have to wait it out. I'm losing muscle everywhere and every day I'm not on anything other than Riluzole I feel like there's no hope. By the time this even gets going, who knows where I will be at physically.

Danielle
 

lisa g

Distinguished member
Joined
Apr 17, 2019
Messages
403
Reason
PALS
Diagnosis
04/2019
Country
US
State
FL
City
Fort Pierce
I'm sorry for your wait, I will say it took me about 6 weeks from my neurologist writing the order to getting my first infusion. I had a pic line put in for the first cycle to monitor for negative side effects. Once I had the first cycle completed I had a port installed before my second cycle. I do have a educational sponsor that checks in with me in case I have any questions or concerns about the infusions. I don't remember and I could be wrong it being a prerequisite for my first infusion. Hope it goes smoothly for you.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
10,683
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Do you go to a clinic? Call them and ask what the process/ timing will be and if you have to wait for that or something else. Every ALS clinic has been ordering Radicava for a long time now. It is true insurance coverage varies and they can’t be expected to know the rules for all but still they should be able to get direction. You also said you discovered your insurance covers it. If you know the copay rules and where you can get it done you can share that with the clinic. If you don’t know ask your insurance

what Lisa said about access methods is important too. I agree that having one round to make sure you tolerate it before getting a port is smart. Most people do fine but I would want to be sure before doing a port
 

DW96

New member
Joined
Jul 15, 2021
Messages
4
Reason
PALS
Diagnosis
06/2021
Country
US
State
IL
yes I go to ALS Clinic, they just messaged me back just now saying that they were waiting on work orders and prior authorization. I guess I thought the Prior authorization was already taken care of. They said they were going to look into it for me which my insurance covers in home, or infusion center. I can't really speak, otherwise I would be making calls. I can just email or go through my chart with them, but they're not always good at answering me back. I don't want to be forgotten about.
Yes I do have to go in for pic line infusion for the first 2 treatments to make sure I can handle it before the port. The educational sponsor said she can do a virtual next week, I think she misunderstood about meeting up, so that is moved up until next week now.
 
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