Kalydeco concern!!!

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piggylu

New member
Hi! For those of you who are on Kalydeco or have a loved one on it, how did you get insurance to approve it for those of you getting it "Off -Label"?
Please let me know, thank you kindly!!
 
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piggylu

New member
To clarify, i am inquiring about those of you taking Off Label Kalydeco that do Not have the G551D mutation, but have another genotype and are approved for Kalydeco!!
Thanks so much!!!
 
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JENNYC

New member
Abby is off label and all I had to do was get a "pre-authorization" and that was just a letter basically saying that the dr is writing a prescription for it....he didn't have to plead for me to get it or anything like that. It was really quite simple! They approved us for 2 years no questions asked!! We are so blessed!! I do hope you get to try it!!! Please keep me posted if you do!!! :) If you need any help or they want others experiences please let me know I will share everything I have to help someone else have a chance!!
 
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piggylu

New member
Thank you SOOO much Jenny!!! I am trying to get approved for Kalydeco because it's been proven that it significantly helps on P67L mutation but its only FDA approved for the G551D so i want to know how others are getting approved!
 
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Aboveallislove

Super Moderator
From everything I've read, Jenny is truly lucky and blessed with how smoothly it has worked. Some insurance companies have a much more difficult process for approval. If you get to the point of them rejecting it, post again, but for now, i'd suggest just calling your CF doctor and ask them to write a script and the pharamacy will let them know if they need to do pre-approval and they usually just do that as a matter of course for off-label things. If it gets sticker, you'll have scientific literature supporting it--which is what most insurance policies require, so that's great. Good luck.
 
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piggylu

New member
Thank you for the information, i truly appreciate any that i can get! Vertex conducted a research and came out with an analysis/research paper showing that Kalydeco does in deed work on my mutations so there is proof that i can benefit so the CF team is trying to get me on Kalydeco but trying to figure out the best approach to doing so.
They are also interested in how other CF patients are getting Off Label Kalydeco! Thank you guys for any info you can provide!!!!!
 
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regina65

New member
piggylu said:
Thank you for the information, i truly appreciate any that i can get! Vertex conducted a research and came out with an analysis/research paper showing that Kalydeco does in deed work on my mutations so there is proof that i can benefit so the CF team is trying to get me on Kalydeco but trying to figure out the best approach to doing so.
They are also interested in how other CF patients are getting Off Label Kalydeco! Thank you guys for any info you can provide!!!!!
Click to expand...




Does anyone know if medicare will pay for it . I have the double df508
 
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piggylu

New member
That's my question as well!! I have Medicare and am wondering what coverage from them is like as well!
 
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JENNYC

New member
We have Humana so not sure about medicare but I would take dr seems skeptical for an answer...I would find out for sure! My dr told me that he didn't think my insurance company would cover it...in fact it wouldn't surprise me if that was the only reason he wrote the script cause he thought they would decline it anyway. But the point is...you don't know until you try :) It's worth it!! It is so very worth it!!! :) Keep us posted
 
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Aboveallislove

Super Moderator
I'm pretty sure I'd seen someone with medicare/aid get off-label approval. We have off label to the state supplemental for nearly all of DS (not Kalydeco), so it isn't impossible to get off label just because government. From what I've read the doctors are pretty clueless on this thinking it won't be approved--the process is no different than with other meds off label and here there is good research to support it working, so I'd try asap. If not, I'd try to get in an n of 1 study. Finally, re ddf508--no one will approve and pay for Kalydeco for ddf508 off label. The FDA label expressly states "it does not work for ddf508." But if I were you, I'd get in one of the studies on the combo which will work for ddf508.
 
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piggylu

New member
Thank you guys for posting! I know i have seen previous posts from others who are on Off label Kalydeco, and I am collecting as much info as possible.
I have DF508 and P67L mutations, and it's been Proven that Kalydeco has a great impact on these genotype. Vertex themselves, did an analysis on other mutations.
I know a guy whose daughters have my exact mutations and are on Kalydeco, the first month his oldest daughter's lung function went from 59% up to 86%
leaves me speechless........ :)
 
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piggylu

New member
It's already in the hands of my CF Team so all I can do now is try to collect as much data from others as i can.
I was asked by the CF nurse to find out others' experiences/recommendations with getting Off Label Kalydeco because it is happening and others are getting it.
Just getting all the ducks in a row before facing off with the big guys! :)
 
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lizlas

Guest
Cost of Kalydeco

Jennyc. . .what was the cost of the kalydeco?

jennyc said:
abby is off label and all i had to do was get a "pre-authorization" and that was just a letter basically saying that the dr is writing a prescription for it....he didn't have to plead for me to get it or anything like that. It was really quite simple! They approved us for 2 years no questions asked!! We are so blessed!! I do hope you get to try it!!! Please keep me posted if you do!!! :) if you need any help or they want others experiences please let me know i will share everything i have to help someone else have a chance!!
Click to expand...
 
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piggylu

New member
That's what i was told as well. BUT, if you add up an average of 2-3 Hospitalizations per year, at-home IVs, medications, appts, etc
I would say that money spent on Kalydeco averages out... Especially if these are all minimalized by taking Kalydeco and health improves!!
 
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JENNYC

New member
It just so happens I received a shipment today and the label reads $24,962.92.....thankfully our copay is only 100 :) Oh and that is for a 1 month supply :)
 
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Aboveallislove

Super Moderator
Jenny, you are lucky. Our pharma just called and monthly co-pay for new enzyme is $300 per month. Mail order is much better so getting 10 day supply and getting through mail order. trying new enzyme to see if it helps with tummy.

Re more info on off-label. If you aren't, join facebook praying for success vx770/809 and then search for "insurance" and "label" as many have discussed and shared info in the past and you can also post a new request for info. Just don't see as much here. This site is very good for lots of topics. That page though is totally focused on correctors/potentiators (i.e., Kalydeco and next round of meds), so folks have more detail there.
 
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