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Author Topic: Has anyone requested 24 weeks Sovaldi/Olysio since FDA Approval?  (Read 13165 times)

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Offline Rubye

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Has anyone requested 24 weeks Sovaldi/Olysio since FDA Approval?
« on: November 16, 2014, 03:14:29 pm »
I was approved for only 12 weeks of Sovaldi and Olysio by my insurance but that is also all the doctor requested. Now that it is FDA approved for 24 weeks for those of us with cirrhosis I am thinking of asking for the extra 12 weeks to make a total of 24 weeks. But, really don't have the energy for a fight.

I live in Oregon and have Medicare with Extra Help and the doctors here don't easily prescribe these drugs, evidently because they think the state will be stuck with the bill for the Extra Help share of the cost. It is all very confusing because the doctors are not too honest. For months they told me they would not give me a prescription because my insurance would not pay for it. I don't believe that is true. So, the point is I am afraid it would take a bit of a fight to get the doctor to prescribe another 12 weeks.

So, I think if others have been approved for the extra 12 weeks it would be a good sign. The thing is the 24 weeks request is not really asking for anything extra but is now the norm with the recent FDA approval. For me, the struggle would be with the doctor and not the insurance company.

Offline Dkredd53

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Re: Has anyone requested 24 weeks Sovaldi/Olysio since FDA Approval?
« Reply #1 on: November 20, 2014, 11:53:26 am »
I've been on Savadi for almost 5 months and started the olysio with it it last week. So I have 11 more weeks to go. After this long of treatment the extra time for olysio would probably be unnessasary.

Offline Rubye

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Re: Has anyone requested 24 weeks Sovaldi/Olysio since FDA Approval?
« Reply #2 on: November 20, 2014, 12:03:41 pm »

Before adding Olysio, you were taking Sovaldi by itself?
No Ribavirin?

Offline Dkredd53

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Re: Has anyone requested 24 weeks Sovaldi/Olysio since FDA Approval?
« Reply #3 on: November 20, 2014, 12:16:04 pm »
The olysio replaced the ribivirin. I think the ribavirin gave me headaches from time to time anyway.

Offline Bucky

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Re: Has anyone requested 24 weeks Sovaldi/Olysio since FDA Approval?
« Reply #4 on: November 20, 2014, 12:39:48 pm »
The olysio replaced the ribivirin. I think the ribavirin gave me headaches from time to time anyway.

Dkredd53,
That certainly is a different prescribing protocol.  So if I understand correctly, you did 12 weeks of Sovaldi & Riba and are in the process of 12 weeks of Sovaldi & Oylsio for a total of 24 weeks.
I asked my IDS via the patient portal at my hospital about the 24 weeks of S&O and she said that they weren't even trying for insurance approval since it cost $300,000 for 24 weeks. Harvoni without Riba is what she is prescribing now for those who need 24 weeks of treatment.
Bucky
I HAVE SLAYED THE DRAGON.....CURED SVR24!

Offline Rubye

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Re: Has anyone requested 24 weeks Sovaldi/Olysio since FDA Approval?
« Reply #5 on: November 20, 2014, 01:07:17 pm »
Thanks DKredd.
But if you already have 8 weeks of sovaldi/Olysio done, then it would be much cheaper for the insurance companies to authorize the other 12 weeks of sovaldi/olysio than to have someone fail on the s/o and then need a new tx. So theoretically they would be paying for the 12 weeks of s/o a person failed plus the 24 weeks of Harvoni.

I plan to ask for the extra 12 weeks of s/o based on the AASLD recommendation of 24 weeks of s/o for those of us with cirrhosis. I am presently in week 8. I'm afraid my doctor will not support this request more than I worry about the insurance.

Offline Bucky

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Re: Has anyone requested 24 weeks Sovaldi/Olysio since FDA Approval?
« Reply #6 on: November 20, 2014, 02:52:48 pm »
I've been on Savadi for almost 5 months and started the olysio with it it last week. So I have 11 more weeks to go. After this long of treatment the extra time for olysio would probably be unnessasary.

Hello Dkredd53,
I am just tiring to figure this out. Since you had been on Sovaldi and Riba for 5 months you only had 1 month to go. You have been on Sovilda & Olysio for 1 week and you are doing 11 weeks more? That would be 32 weeks total treatment.
How did you get this approved and who is your insurance carrier?
Bucky
I HAVE SLAYED THE DRAGON.....CURED SVR24!

Offline Rubye

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Re: Has anyone requested 24 weeks Sovaldi/Olysio since FDA Approval?
« Reply #7 on: November 20, 2014, 03:27:24 pm »
I was wondering the same thing Bucky. I could use that kind of insurance.

Offline BattleTheBeast

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  • Female, 57 - SVR12 as of 7/23/15!!
Re: Has anyone requested 24 weeks Sovaldi/Olysio since FDA Approval?
« Reply #8 on: November 20, 2014, 04:52:58 pm »
I did ask my doctor about extending the S/O to 24 weeks and he said we could discuss at 9, I am currently at 5-1/2. He really isn't sure about be continuing since I have had a really itchy reaction to the Olysio and it isn't getting less or better. He's even mentioned pulling me of the S/O sooner and trying something else. I didn't have too  hard of a time getting approved because I have the dreaded  Stage 4 of cirrhosis. I really think he is trying to wait on the Abbie combo coming out in December for me. If the S/O needs to stop or I need additional treatment I think he is leaning that way because of his experiences with the trials he was involved with.

~Mel~
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline Rubye

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Re: Has anyone requested 24 weeks Sovaldi/Olysio since FDA Approval?
« Reply #9 on: November 20, 2014, 04:59:08 pm »
I've been thinking about just waiting for Abbvie myself if things don't work out. I'm tired of the S/O and still have 4 weeks to go. Another 12 weeks sounds too demoralizing.
But then all of this is a kind of mental masturbation on my part because I just tested undetected and negative. Last time I was undetected and very weak. It's kind of like if I think the worst, the best will happen if I don't expect it.
However undetected really doesn't mean a thing at this point.

Offline Bucky

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Re: Has anyone requested 24 weeks Sovaldi/Olysio since FDA Approval?
« Reply #10 on: November 21, 2014, 09:33:34 am »
I've been thinking about just waiting for Abbvie myself if things don't work out. I'm tired of the S/O and still have 4 weeks to go. Another 12 weeks sounds too demoralizing.
But then all of this is a kind of mental masturbation on my part because I just tested undetected and negative. Last time I was undetected and very weak. It's kind of like if I think the worst, the best will happen if I don't expect it.
However undetected really doesn't mean a thing at this point.

Rubye,
Finish your four weeks and see what happens. The cure rate is still pretty damn good for 12 weeks S&O.  If it doesn't work out then try something else. I do like the Abbvie 3D since it doesn't have Solvadi in it. My IDS has the same view because she doesn't reuse a failed drug cocktail with her HIV clients. As you know it is not the same virus, but a virus none the less.
Bucky

BTW,  "mental masturbation" is the best descriptive phrase that I have ever read here. Ups & Downs are expected while being treated and I know that you can "work it out".
« Last Edit: November 21, 2014, 09:36:37 am by Bucky »
I HAVE SLAYED THE DRAGON.....CURED SVR24!

Offline Rubye

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Re: Has anyone requested 24 weeks Sovaldi/Olysio since FDA Approval?
« Reply #11 on: November 21, 2014, 11:16:02 am »
Thanks so much Bucky. That's exactly what I needed to hear.

Offline trapper

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Re: Has anyone requested 24 weeks Sovaldi/Olysio since FDA Approval?
« Reply #12 on: November 21, 2014, 05:02:53 pm »
rubye.   I was wandering the same thing and started asking around.  I was looking into s/o fda approval and noticed they were recommending 24 weeks of s/o for my condition.  23mil  viral load, f3, chirrosis. gt 1 my dr put in for s/o for 12 weeks before guidelines were put out.  If I have a viral load at 8 weeks they may put in for another 12 weeks.  Ill wait and see what happens at 8 weeks.
Just got labs today.   un-detected at 4 weeks.  Im impressed because my viral load was 23,076,258 and honestly I didn't think it would get rid of this miserable tenant that soon.  But it did and I'm thankful.  good luck later  trapper

Offline Rubye

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  • Posts: 130
Re: Has anyone requested 24 weeks Sovaldi/Olysio since FDA Approval?
« Reply #13 on: November 21, 2014, 05:54:05 pm »
It makes you feel so good to see that "undetected" doesn't it? At 4 weeks I was undetected with a "weak positive" (<12 viral count) but now my 8 week labs say I am undetected with a "negative". That makes me feel REALLY good. :) I'm waiting until a week after end of treatment, or week 13, to do my next viral load.

Anyway, it really doesn't make any difference if we are undetected at week 12 and so I don't see it as a determining factor for whether or not to go on and do another 12 weeks. I'm F4/cirrhosis and so naturally worry. The most important thing about asking for the new 12 weeks is because each day it is getting more and more difficult to get these drugs. If you're doing well and have the energy, you should ask for another 12 weeks now. Just my opinion of course. For me, I'm burned out on the drugs and looking forward to being off of them.

Good luck to you!
Take care.

Offline penny

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Re: Has anyone requested 24 weeks Sovaldi/Olysio since FDA Approval?
« Reply #14 on: November 21, 2014, 09:21:01 pm »
Seems like ins cos are clamping down a bit. Maybe once India gets these drugs people will become medical tourists.

Offline Dkredd53

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  • Posts: 9
Re: Has anyone requested 24 weeks Sovaldi/Olysio since FDA Approval?
« Reply #15 on: November 21, 2014, 11:42:11 pm »
   Sorry to confuse ya'll. My previous response was clipped somehow? I am a transplant patient so everything seems to be twice much - twice as long and twice as sick when something goes wrong. lol  But yeah, On the savaldi for almost 5 months now. (another week will be 5 months) It was supposed to have been for 6 months. But, when I started, the insurance would not cover the olysio. But now, they said they would, so they are simply tacking on 12 wks from when I started the olysio. So I hope the hep c is going to be gone for good. It should, That's a long time on this stuff. I can't even imagine the cost ??  whoo wee ??[/b][/size]

 


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