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

[diagnosed2016]

It's been incredibly frustrating for us to get the drug too. one form after another and someone is always dropping the ball. The prescription was written at the end of August and we still haven't started.

 

[Dgnk]

Thanks for all the info Kristina! You are way ahead of me strategically. My own fault I think, as I was diagnosed at UMass last Oct, then was sent to UMiami ALS center because of being in Fl, then back North and recommended to go to Lahey as they are a "center of excellence". Bouncing around and hopefully taking root now at Lahey.
Interestingly, one of my endless phone calls revealed that Medicare would not cover infusions done at a hospital. So I'm pursuing Option Care home infusion now, and they are processing huge numbers of requests one at a time, trying to determine coverage. I'm pleased to hear from you that learning to do our own infusions is a possibility.
I'm looking forward to hearing that things are working out for you asap. Good luck!

 

[Dgnk]

Re: What a Nightmare! Searchlight boondoggle

Shaker, I sympathize with your frustration at trying to get things moving forward for your wife. What's amazing is to hear, on the other thread, from the small but significant numbers of people who have somehow made it happen! So we know it's possible. Just hoping that all the needed bits and pieces of necessary info converge on some caring person's desk and that they follow through and tell us what to do next.
Best of luck to you and your wife, hoping to see you post success very soon.

 

[Clamdigger]

I'm in the same boat. I have everything in writing, the prescription, the insurance companies approval letter, Searchlight's co-pay reimbursement plan and starter kit, and I still can't get the treatments started. The worst part is no one seems to be able to give me an answer as to why they can't be started either. I've had the prescription since early August.

 

[stan453]

I was denied by United Health Care. They said in denial letter Radicava was experimental. My Doctor is appealing.

 

[Kristina1]

Update- got a call from neuro yesterday. Apparently now insurance is now asking for more documentation from my neuro, and one of their listed documented requests is ALSFRS scores of at least a 2 from each item. Well I happen to have I think one or two items with a score of "1". But my neuro said this is unreasonable of them and she believes we can fight it.

 

[Kristina1]

I'm in the same boat. I have everything in writing, the prescription, the insurance companies approval letter, Searchlight's co-pay reimbursement plan and starter kit, and I still can't get the treatments started. The worst part is no one seems to be able to give me an answer as to why they can't be started either. I've had the prescription since early August.

Even if insurance approved and I was all set today I couldn't start yet because my hospital hasn't received the drug yet. Apparently there is some backlog with everyone ordering the drug at once. My neuro said they hope to have it by end of this month.

 

[Dgnk]

Any progress, Kristina?, or Shaker?
Option care has received all my info from searchlight, said they needed another something from my neuro, and after that comes they are processing these cases one by one and can't give me any reasonable idea when I will hear from them , or whether Medicare and united supplement will cover.
Meanwhile I heard from another source that Medicare original will not cover home infusions or the drug, and United says if Medicare isn't paying, then they aren't either. Yet I know there's someone on the other thread who has Medicare and bcbs who is covered. I'm trying not to get too obsessed by this whole thing, but it's hard not to.
Hoping it's moving forward for you both.

 

[Kristina1]

Hugs Dgnk, I hope you get an approval and soon!

Well my neuro emailed me yesterday and said the good news was they were able to send all the additional info insurance company requested and make it fit the requirements. She said she is still hopeful for an approval for me, now we are just waiting to hear back. Meanwhile they just got the drug at my hospital and have started giving infusions. So if I can finally get insurance approval I will be able to start right away. Fingers crossed!

 

[Dgnk]

Kristina, I hope to hear very soon that you've started and that it's going well! Keep us posted please, I will also.

 

[Lkaibel]

My husband is 67, on Medicare of course with a Medica supplemental. We are in MN and his ALS clinic is the U of M. He will start influsions Tuesday and Wednesday at the hospital, and then we will be doing them at home. The homecare nurse will do the first two, then we do them with his port.

This has been in the approval process for at least two months, and involved numerous authorizations including for the home infusion and both Medicare and Medica.

 

[Clamdigger]

My wife spent a few hours on the phone Friday, talking to multiple people with Searchlight and Option Care, and she was finally able to learn that Option Care does not accept our insurance, Cigna, so they were trying to work with a 3rd party to be a go between them and Cigna which was causing the hold up in getting treatment. Armed with this new information she went back to Searchlight to find out what other options were available to me. She was told that since I was approved for treatment that I could go to any infusion center that I wanted to as long as they accepted Cigna and were certified to administer Radicava, and if they weren't certified that Searchlight would send a representative to the center to certify them. She contacted a few places and we hope to hear from someone soon.

 

[gigem]

I have Blue Cross Blue Shield via the Texas exchange (i.e. Obamacare). They approved Radicava for my wife, and she started her infusions on Friday. I am doing them at home now.

 

[Shaker]

Any progress, Kristina?, or Shaker?

Not yet! We are just about 2 months in from when Radicava was prescribed. One hand just doesn't seem to know what the other is doing. I'm just so amazed at how absurd this whole process is. To make a quick comparison as to how my health care works as opposed to how this nightmare is working for my wife's, is illustrated by this example. I went to my Orthopedic surgeon on Monday for a consultation and it was decided that I needed my shoulder rebuilt and replaced. No problem, surgery scheduled for Nov 14th. Three weeks from today. Years ago it would have taken much more preparation and planning, but medicine has steadily improved (in most cases) and become somewhat routine for what was once viewed as medical miracles. With ALS it is an entirely different animal. What should be a straight forward procedure for procuring this drug has become a needlessly stressful process. I was told my a longtime ALS nurse that the medicine should NOT be in short supply as the drug manufacturer knew there would be strong demand and actually made twice the anticipated amount to cover the large immediate demand. Its just a shame that patients cant get the help (what little it actually offers) in a reasonably timely manner. Not looking for instant service from all parties involved, but when it takes not days, not weeks, but rather months to MAYBE get the drug to the patients is not just irresponsible but borderline criminal. How would we like it if out police and fire services to react in this ungodly molasses -like pace? Its simply ludicrous! I sincerely hope that other ALS patients are getting the drug quicker and are that they see the positive results advertised. Sorry the long winded rant. Much frustration here as I see my wife's condition deteriorate weekly.

 

[Dgnk]

Sorry Shaker. Me too. I’ve called Option Care after another week to check on progress, no call back. Tomorrow I guess I’ll go into PIA mode and place calls to Searchlight and Option Care till someone tells me something. Too much time is passing, and I see that people with all kinds of insurance combos are somehow managing to get this drug and even getting trained to be fairly independent in the use of it. How are they getting hooked up with all these helpful people? I hope this falls into place very soon for your wife and you.