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

[Lkaibel]

You know, what is sort of infuriating about this is that self administered home infusion is actually LESS expensive for the insurance companies, not more. I have it on good authority that the clinics are paying and charge back to insurance exactly the same amount for the drugas the home care agencies. Plus clinics charge staff fees.To me, it smacks of corruption and a deal being made to insure that these clinics continue to make the Bucks. I am not a conspiracy theorist, but I really think this is foul.

 

[Dgnk]

Definitely very confusing. My most recent conversation with searchlight informed me that Medicare only covers home infusion if you are really really home bound, getting nursing services etc at home. This after Option Care asked me if i would be willing to learn how to do my own at home, like that might be the magic answer to getting this process moving. So now Searchlight is supposedly looking into UMass as a possible infusion site, which Kristina is using! (So glad the first went well, and will be eager to hear how the process evolves Katrina!) so far it’s been well over a week and no word from Searchlight on whether they’ve even called UMas, or has my folder just been put back at the bottom of the pile.
So far I feel I’ve wasted the best months of the year, travel-wise, sitting here waiting for this thing to happen. I’m now making other plans to go have some fun with relatives in warmer places for several months, and what’s the bet the long-awaited go-for-it phone call will come as we drive away.

 

[Clamdigger]

After 3 1/2 months of battling with every agency involved, I finally received my first shipment of Radicava on Saturday and a promise of a phone call today to schedule the in home infusion. Since Option Care doesn't have anyone near me they subbed it out to a company called Brightstar.

 

[Clamdigger]

Had my first infusion last night. No side effects at all during the infusion or after.

The nurse used an IV in my forearm for the infusion. She basically said I had 3 option, the IV, a PICC, or a port. What's everyone else using? Any recommendations as to which one to go with?

 

[Kristina1]

Hi Clamdigger, my doctor had me do a few days with just an IV to make sure there was no allergic reaction. Then she ordered a PICC line for me. She wants me to use the PICC line for 3 months, and then if I decide to continue the treatments long term she will have them remove the PICC and put in a port.

The benefit of the port is you can use it permanently and it is under the skin, meaning no external dangling parts, you can shower normally without worrying about keeping area waterproofed etc. But it's a slightly more invasive procedure to put in and remove.

My picc was just put in this morning. I'm kind of wishing they went straight to a port so I could not deal with the extra hassles of the picc but on the other hand my doctor's reasoning for waiting 3 months makes sense too.

 

[gigem]

My wife is between her 2nd and 3rd rounds of Radicava. I just got the EOB (Explanation of Benefits) from Blue Cross Blue Shield for the first two rounds, provided by Soleo Home Health.

Round 1 - total cost $57,445. I owe $2665 of it. Round 2 - total cost $41,032. I owe $0.

Pushing $100,000 already. This is way more than I thought. Thank God insurance is covering it.

 

[Shaker]

Well I didn't think it was possible to go beyond the 3 month waiting period for Radicava, but it indeed has happened. We were just notified that my wife is now enrolled in the Searchlight Support Out-of-Pocket Assistance Program. We were also informed from my wife's insurance company that they will cover the costs of some/most of the medicine and infusion administration. We thought that this was good news, but we were told that another company (Envision) had to be involved in obtaining the drug. Where does this ALL end? How many hoops must one go through to simply have this drug wind up in an ALS patients arm? I can't believe the length of waiting time and the ridiculous amount of players in this process! This is a terrible way to treat (or not medically treat) ALS patients. Time is their enemy! The insurance companies and big pharma are culpable in taking their time away. Still waiting and growing more impatient and frustrated with this whole process. I did have one doctor say to me - that it might be better time spent living, traveling and living some more than wait for this drug of spend the time in an infusion center. Maybe she was right. Unfortunately time will tell.

 

[Dgnk]

Sorry Shaker, so frustrating.
Its been over three months for me too. More than one month ago Searchlite told me they were looking into getting my infusions at UMass, (where Kristina is presently getting them, I believe) and I have not heard a word from anyone since then, not Searchlight, insurance or Option Care.
In my head I had already decided not to frustrate myself any further, and started planning the travel/living thing. Clinic doc said they had spent hundreds of hours working towards getting patients on this drug without success, and gave his blessing for me to miss my next clinic and go live a little. Fortunately my progress is fairly slow, so this isn’t a huge tough decision for me. We are heading South and West starting Saturday, fingers crossed that this is a good trade-off for us. Good luck to you and your wife, I hope it sorts out very soon.

 

[Shaker]

Dgnk - I think you have the right idea about heading south. The warmer weather will certainly do you a lot of good. I'm seriously thinking of doing the same. We are "supposedly" in the final stages of obtaining the Radicava and the infusion of same. I'll believe it when I see it. Pushing 4 months now. What a cruel and harmful joke! After our last visit to my wife's clinic, I'm now left with the impression that this drug may not live up to the billing of earlier reporting of its efficacy! I'd like to be more optimistic, but I haven't seen the action of the insurance company, searchlight and option care be very expedient. Time will tell. Good luck to all and have a great holiday.

 

[Nurse321]

Regarding Radicava. I also have a friend in my ALS Support group that has been on Radicava for 3 months now. Not too impressed either. I am not certain what to expect but my ALS Clinic at Houston Methodist Hospital said I would be put on the list. Seems no one gets in a hurry though. I would interested in hearing from those who have started it and how they are doing. Blessings to all. Merry Christmas. I know this will be my last Christmas and I feel so sad.

 

[Dgnk]

Shaker, leaving the frustration behind and heading South has been the best for us so far. My husband tore out the “couch” in an old motorhome and bolted in a recliner, complete with seatbelts. The warmer weather seems kinder to the muscles. Also, much less energy expended in this tiny space, and tho that may not be the best approach long term re staying in shape, I am so much more comfortable overall it’s amazing! Im sure the constant distraction of traveling keeps me from sinking into bad thoughts too. I hope you and your wife either get the Radicava pronto, and that it works optimally for you, OR that you can get away from that miserable weather up there and enjoy some travel.
My thoughts and prayers are with all of you on this forum, Pals and cals and others, have a blessed Christmas.

 

[Romeosc]

Started home infusion of Radicava on Mon 01/08/18. My wife did the 3rd and 4th infusion for me,, but she came down with Flu, so I infused myself on the 5th and 6th day. I have difficulty opening and hooking up the flush syringes with my fat and not so nimble fingers. She is better now so maybe she will be up to helping again.

Has anyone else done self infusion and what is your experience?

 

[Dcwill61]

Got my Radicava delivered, was told it's all free and even our local nursing is free for home infusion. I to want port but will wait few months to see if any side effects. Hoping I maybe able to do self infusion but maybe impossible. I live alone have niece to help on her lunch but she not there to unhook. Hoping for the best but this may be just another false hope.

 

[Romeosc]

Medicare covered medicine but not home infusion!
Grant from HealthWell.org for home infusion

Got Port-A-Cath installed Monday for second round .... amazingly 1 IV lasted for 14 days of first round

 

[Shaker]

Well after 4 1/2 months we FINALLY got started on the Radicava! But, the day before my wife's 1st infusion was to occur, Option Care tried an end run to cancel the order on both the medical and insurance parts. It was nothing but a small miracle that one of the Option Care employees was able to make it happen. It was very disheartening and cruel to receive those phone calls within about 45 minutes of each other to torpedo the infusion process. It really smacked of conspiracy and a deliberate attempt to derail the process.

That being said, at least my wife is now receiving to drug. We are obviously curious to see how she reacts to the Radicava. Not to be sour grapes (especially to those still waiting) about the process, but it would have been much more reassuring to have had this drug 3 or 4 months ago. My wife, like many others were left hanging in the wind waiting for this drug as their conditions worsened during the past few months.

In my wife's case, she has deteriorated significantly in all areas and who knows if it would have been delayed a bit with an earlier delivery of this drug. Mostly, it was the mental anguish that she suffered thinking that it would be the next week, then the next week, then the week after that and so on and so on. A horrible way to conduct medial treatments or perhaps better said as "mis-treatments."

I hope that all that are waiting for this drug get it sooner than later. I just wish that those insurers, reviewers and other administrators really get an understanding of how precious each day is for an ALS patient. Good luck to all and keep up the good fight. I'll report back and let you know how my wife is tolerating the infusions.