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

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I understand your frustration. I handled everything for my husband. I worked hand in hand with the doctor's office, Soleo, Cigna, and a company called Carecentrix that Cigna outsources to for Radicava. Nothing really moved forward with Cigna on call after call, until I uttered the words:

"Do I need to have my attorney contact Cigna to move this claim forward? My husband has ALS, and while your company is giving me lip service, my husband's disease is progressing. Are you discriminating, because he has ALS?"

The Cigna rep went into action, calling several departments, to find out where the breakdown was. The final department was gone for the day, but he set a time to call me the following morning. He was still gathering info, but he called every hour that day with progress reports. He was finally able to determine that Carecentrix was the problem. They were denying all claims because Radicava did not have a code in their system. It took 4 days for that to happen, and everyday I kept calling the same contact at Cigna, pushing. So often, he called me to inform me of progress. I didn't let up, but just kept pushing. Finally, this contact was able to get Soleo, Dr.'s office, Carecentrix and Cigna all on a conference call. Each person stated what they needed, and they worked as a team. It was another 2 weeks, but my husband received his first infusion on 9/27. I felt like I was in the fight of my life to get this done. We have done all infusions, but 1, at home.

He was the 1st person to receive a port at our ALS Clinic , and tomorrow, a nurse from Soleo will be coming to show us how to use it, and he starts the 2nd round of infusions. I chose Soleo because Option Care did not return my call to them, and Soleo has been wonderful. All I know, is the Cigna rep was compassionate, respectful, and truly wanted to help. Searchlight was exactly the opposite. Absolutely no help at all, so go around these people. Call your insurance company, until you find someone that will listen, and if you need to use my strategy, I know it worked!
 
Thanks Dgnk - Here's one for the books. I had a great opportunity to speak with an ALS insider (I don't want to identify this person by name or position) yesterday in person at great length. The upshot is that the roll out of this drug and subsequent administration was and is totally botched. In my area there are over 125 individuals diagnosed with ALS, get ready for it; Only 1 of them are currently receiving treatment with Radicava! That's an unbelievably low number. I was astounded to hear that only 1 is being treated. I see all of the Radicava advertisements but I wonder why? Why would a company spend money on advertisements but not have the ability or process to get the drug to the patients? What a mess! I really think the press or news media needs to make the public aware of this debacle. Its flat out an embarrassment and an indictment of the health care system as seen from this CALS. This situation has to get better because it cant get get worse (actually it can but I want to remain positive). I hope you hear soon from the powers that be that you get your treatments started soon. Feel better and lets all hope that the administrators get their collective acts together.
 
Update: Just heard from my neuro this morning that I finally got insurance approval! We've been trying since August! If all goes well I can start Monday (next week)!
 
That’s wonderful Kristina! Good luck and please let us know how it goes.
 
We just started today after having the script since late aug. the process has been insane. Daily phone calls, to assorted agencies, redundant forms over and over again that have been required to be filled by the neuro, who is hard to get a hold of on off-clinic days. Things that were done and approved for the drug itself had to be redone for the nursing company to administer at home, and then again for their pharmacy to release the drug. It's just nuts and has been so frustrating. Keep calling and trying to get in touch with a specific person at whatever stage you're at in the approval (searchlight, option care, etc). Demand a timeline that you can hold them to.
 
Word of warning, and we are still sorting this out. My husband has all parts of Medicare, including drug coverage. He has Medica supplemental. He was told by our ALS clinic that all parts of Radicava would covered. We now have a bill for $2,500 dollars and have been told by Fairview Home are this would be his monthly copay for the drug. We did just a few days of the drug, three to be exact before my husband got extreme weakness and appendicitis.

We will no longer use the drug and are taking the clinic to task for telling us it would be covered when obviously the co pay is huge. Nope, even without other concerns would not be using this drug for $2500 a month. Very angry about bad information.
 
So here is the latest on coverage: my husband got a phone message today from a Nurse stating that there would have been no charge for the Radicava if it had been administered at the infusion center, but at at home the drug itself, not the homecsre charges were a $2500 co-pay for the 14 day course.

She then blathered in about if my husband wanted to get the port removed, call and she would have Dr Walk order that.

Well this evening Dr Walk called and said he did nothing t think that was the case. We were told explicitly when he started Radicava that all happened f it, including Home infusion would be covered. Apparently now he also has staff calling and giving information that differs from what he is stating?

Beyond annoying, I am so glad we are not going farther with this drug and my husband said if he ends up paying we will not return to that clinic. As he said “ Anyone can squeeze my hand, test my breathing and tell me I am dying every three months and maybe give me accurate information too”.
 
Well here's our update after 2 months of having the doctor at our clinic write the script for Radacava be prescribed for my wife. Option care is still claiming that the clinic doctor hasn't returned several forms. I'm not sure how that is possible at this point as they are very responsible and are well staff. 1) Option care is requesting a "prescriber's order form" (just how did option care even know that this drug was prescribed in the first place? Lunacy!) 2) Option care is requesting an "Adverse reaction form" (you've got to be kidding me? How can you have an adverse reaction to a drug you haven't taken and furthermore to a drug that virtually NO ONE has taken or yet even prescribed? More Lunacy!) Lastly they want a clinic update from my wife's last visit. This process is and has become a disgrace. The ALS association needs to apply some sort of pressure on the Manufacturer of this drug to smooth out and speed up the delivery of their drug. Its certainly not doing any ALS patients any good sitting on a shelf somewhere in an infusion center or pharmacy. WHO can really help our ALS patients? The manufacturer? Searchlight? (now that's an ironic name-more like Nolight) The insurance companies? (That's not their game - they are trying to make money) The ALS Association? The ALS clinics? Maybe the Press and Media? As time goes by we all know what happens to ALS patients. I'd love to see a definitive answer to my questions, but unfortunately I already know the answers. More paperwork and wasted time!
 
The proceans has been incredibly frustrating. There were so many forms- every day there was a new one for someone to fill out. I hope that these first few months will better instruct searchlight and optioncare how to proceed because it's a joke. It took us from script in Aug until Nov 2 to start treatment
 
Well I have still not started despite finally getting pre-authroization approval. The hospital needs a document from insurance company and insurance company refuses to fax it, they've supposedly mailed it but we are all just waiting around for it and it's been almost 2 weeks!
 
Update- we finally got the approval code and I'm getting the first infusion today!
 
That’s wonderful! At UMass? Is the plan to continue there or will they teach you to do your own?
Sorry to be so nosy, but I’m still so confused about the possibilities.
I hope it goes well.
 
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Not nosy at all, ask away! Yes, I was at UMass. The infusion went well; no side effects/issues. The rooms at the infusion center are very nice and comfortable. My doctor said they are working on insurance approval to switch me to home infusion and then, once I have a PICC line, they'd have a nurse come to our home and teach us how to do it by ourselves. She said if the next one or two infusions also go well with no reactions/issues, they will put a PICC line in by end of next week. Then the plan is to put a port in in 3 months if I decide I want to continue the infusions long-term.
 
I have been here before, but just wanted to clarify on my husband’s insurance issue so others might beware:

My husband has Medicare (he had it before as a retiree, thankfully!). He has all parts of Medicare and a supplement through Medica.

My husband was told by his clinic that home infusion would be 100% covered for Radicava. This would be with home care showing up for the first few infusions and then me doing them for the remaining ones and for future cycles.

Instead, my husband was billed $2,500 for the drug as a co pay. We were then told this co pay only applied with home infusion, it would be 100% in clinic.
 
Thanks Lenore, I have heard of that happening as well from my neuro. She said some insurances are only covering it in the hospital and wont cover home infusion. Im still waiting to find out if mine will cover at home (that's the insurance approval they are looking into now).
 
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