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

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Active member
Jul 15, 2021
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.

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.
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
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.
ok I have been doing the infusion treatments for the first 2 weeks, going to the local hospital in their infusion area. Looking online at my insurance, it looks like they're not going to pay anything? Even though I thought I got all of this preapproved but maybe the hospital didn't code it correctly or the proper documents are not there as to why I need this, even though the insurance sent me paper saying it was approved for those dates. Anyways my hospital is sending bills to insurance for $8000 each day of infusion! does that even sound right? $8000 to hook up an IV to my port for an hour? (that's not the med cost)
Do not panic. If you had preauthorization it should work out. Do you have it in writing? Email? How did you find out it was okayed. Hospital rack rates are crazy numbers. When this gets straightened out you will probably see what got paid

call your insurance
What insurance do you have? I have Medicare A+B which covers my infusions. What Medicare doesn't pay is picked up by my secondary insurance. And yes $8,000 each day can be the expense depending on where you receive your infusions. I'm a snowbird so I get my infusions in two different states and the difference in cost is staggering. When I receive my infusions in Florida I'm charged $7,600 a day because I get my infusion at a infusion center attached to the hospital. When I'm up in Ohio it's a different story, I'm charged $2,600 a day. The difference is because up north I get my infusions from a free standing infusion center not attached to the hospital. I was told by insurance that getting them done through the hospital I'm charged their pricing.
wow, just wow. Can't believe the cost involved. I hope it gets straightened out because that is close to $70,000+ sitting there uncovered by insurance just for 10 days of infusions. And I start back on Monday for another 10 days. Can't afford going in to do that not knowing if it's covered. I have Bulbar onset, so I can't even speak to make calls. Just send emails & messages and wait to hear back, or have my brother start calling.
Seems like no one is very familiar with Radicava approval & billing, seems like a nightmare from the beginning. I just thought I was past that once it initially was finally approved, I got the port and started treatment.
I have employer insurance. I was told Medicare would only pay 80% - I have not signed up for Medicare yet as I'm still working and was told my insurance would cover 100% of it. I was also told Medicare doesn't cover home infusions, so they set me up at my local hospital to get them at because my employer insurance would cover, and then down the road Medicare would cover.
I am unaware if I am close to a stand alone infusion center, it doesn't look like it.
The center llkely would not have so much as opened a bag of tubing without preauthorization, which I trust is documented, as Nikki said. If you are looking at your portal, they probably haven't caught up with the paperwork yet.
Do get your brother to call to get this straightened out. I think as Laurie says it just needs to catch up but this is so stressful. Make sure you have authorized him to speak for you or be with him. Make sure he has any preauthorization paperwork you have to refer to

back in my private insurance pre Medicare days I would see the claim for a service with the whole number that said pending. I think for things without just a clear copay ( like an office visit) it might have also said you may owe the whole amount but it always worked out.
well it took a few days, but I just got my confirmation that everything should be taken care of. Had to do some online chats with insurance reps, send an email to the dept who handles the specialty medicine claims. Then mychart messages to the neurology dept back & forth that some wonderful nurse today finally got on the ball for me, and she personally made all the calls to the insurance, specialty medicine and my local hospital to make sure all the prior authorizations and the appts were setup. what a relief!
so glad to hear this!
More questions - I am still working and plan on it until I can't anymore so I am using my work insurance that is covering Radicava.
From my understanding of what I have read, I can apply for Medicare parts A&B while still working? And Medicare would cover 80% of infusions and then employer insurance billed after?
If I left my job and got disability at that point, can I get Medicaid to cover the the rest of infusion costs?
And my ALS nurse said Medicare doesn't cover in home infusions, is that true?
I am still fully able to go every day to the hospital for infusions, but what if at some point I'm not? Then the option isn't there if I have Medicare?
This is all so confusing. Thanks for any answers/advice.
If you are under 65 you can only get medicare with ssdi. You can only get ssdi if you are not working. Approval should be automatic with an ALS diagnosis but working is an automatic disqualifier before they even look at a diagnosis

whether you qualify for medicaid would depend on income and possibly assets depending on state rules

also depending on state you may be able to buy a medigap plan that is pretty comprehensive If you do original medicare people also need a plan d for prescriptions. The other option is medicare advantage. That is oftenlike an hmo and whether it would work for your needs is location and person dependent. The networks don’t work for me where I live.this may or may not be an issue there

if you have access to a social worker they may be a resource to help you figure it out. Every state also has a SHIP counselor program with volunteers trained to advise on medicare- they don’t pick for you but can help you find what you need
ok that's where I get conflicting info from sources I know SSDI would only be if I quit, but wasn't for sure about the Medicare part.
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