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Author Topic: Hope built up for Harvoni, just crushed by 2nd GI and Express Scripts  (Read 8098 times)

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Offline Cheryl F

  • Member
  • Posts: 11
Hope built up for Harvoni, just crushed by 2nd GI and Express Scripts
« on: May 23, 2016, 02:21:45 pm »
Hey.. for anyone that has read any of my previous posts... I had to start at ground zero with new GI in Georgia (just moved back from Texas).  VL went from TX count of 624938 to the latest number last week...681580.  Again this GI Doc touted about all the work her specialty pharmacy could do to get Insurance to cover Harvoni... she has several patients on Harvoni..etc..
Just got the call today that Harvoni was denied by Insurance again. They are pushing the Viekira Pak.  I am going through a lot of other stuff in my life right now and I am not sure what to do here... or if I even have the gump to fight a battle for Harvoni.  I have been with a job for 8 months and still on COBRA which is butt expensive...
If Viekira Pak does not work.... after the 12 weeks... am I done?  Is it just a lost cause... or can I take something else after I have already tried the VP?
I just want to run away.  UGH.
Logged
53/Female
VL: 624,938
GT: 1b

Offline NYCHEPCMAN

  • Member
  • Posts: 63
Re: Hope built up for Harvoni, just crushed by 2nd GI and Express Scripts
« Reply #1 on: May 23, 2016, 02:55:27 pm »
Hi Cheryl -

Like you I have 1b - started in a VL of like 1.2 million - I was denied Harvoni but approved for Viekira Pack - I finished treatment like a month ago and await by 12 week EOT test. But at my 4th week test I was undetected and I had no side effects from treatment. Other than having to take pills twice a day was a breeze for me.

Please keep us posted.
Logged
GT 1b
VL 1,237,287
Diagnosed November 2015
alt 66 ast 35
F2 fibrosure
2/3/16 Started 12 weeks Viekira
Week 4: Hep C virus by PCR   <1.18 NOT detected, <15 not detected IU/Ml AST 18, ALT  25

Offline Cheryl F

  • Member
  • Posts: 11
Re: Hope built up for Harvoni, just crushed by 2nd GI and Express Scripts
« Reply #2 on: May 23, 2016, 03:01:43 pm »
Thats good to hear..... I am just scared I suppose..... I am really happy for you... hopefully my story will be similar.  Fingers crossed!  THanks so much for your input.
Logged
53/Female
VL: 624,938
GT: 1b

Offline KimInTheForest

  • Member
  • Posts: 1,972
  • Believe in yourself
Re: Hope built up for Harvoni, just crushed by 2nd GI and Express Scripts
« Reply #3 on: May 23, 2016, 06:39:21 pm »
I think you will do well on the V-Pak, Cheryl, and that you will almost certainly be cured with 12 weeks of it. And because you are 1b, you shouldn't need ribavirin. And that is a big bonus!

I also believe that, if for whatever reason the V-Pak did not work for you, you would have other options for retreating. You would not be stuck with Hep C for the rest of your life.

I didn't do V-Pak myself. But quite a few others here have. So maybe they have some info to share with you.

best,
kim :)
Logged
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline Cheryl F

  • Member
  • Posts: 11
Re: Hope built up for Harvoni, just crushed by 2nd GI and Express Scripts
« Reply #4 on: May 25, 2016, 11:22:39 am »
Thank you Kim for your words of hope!  I am actually going to continue to fight for Harvoni (at least for now).  In the current depressed state I am existing in ... I am not certain I can remember to brush my teeth on a daily basis.. much less remember to take the VP 3 times a day. Thanks again for your encouragement.
Logged
53/Female
VL: 624,938
GT: 1b

Offline FutureThinker

  • Member
  • Posts: 711
  • Onward and upward!
Re: Hope built up for Harvoni, just crushed by 2nd GI and Express Scripts
« Reply #5 on: May 25, 2016, 01:09:32 pm »
Cheryl F, I remember all too well how fatigued and down I was when I was fighting with my insurance company to get coverage.  It was awful. I want to give you a little spark of hope here in that if you can muster the energy to keep fighting, it really will be worth it! I didn't know just how drained I felt until I didn't anymore, after just 6-7 days on Harvoni.  I suspect it's similar for the other DAAs. We had one member who was on a trial and getting VL blood tests every couple of hours the first day, then a lot over the first week -- it was absolutely AMAZING how the DAAs strike down the virus load and to see the actual numbers over the course of just the first day/week!!!  I'll see if I can find that post.

Try to get more info on the Viekira; if you don't have to take the ribavirin, from what I've read on this forum, you will likely do fine. I would have had to take it as a genotype 1a, which I really preferred not to do, so fought for the Harvoni. I had to get my state's insurance board involved to overturn the insurance denial.  That may be an option, too, and my doctor's office helped w/ the application. The state board made their decision in ~ 30 days.  So you have options in addition to generics or a clinical trial! There are also patient advocates listed on this forum that can help (I'll look that up), in addition to your own doctor's office. You don't have to try to do this all by yourself.

Take a deep breath and keep putting one foot in front of the other as best you can, because it will be worth it!  FT
Logged
Treatment naive
Likely contracted mid-70s
Diagnosed 1a, 2011
F1-2
Harvoni X 12 weeks, completed 5/17/16
Pre-treatment: VL 3 mil, AST 64, ALT 84
4 week labs: VL 30, AST 21, ALT 14
8 week labs: VL UD!!!, AST 22, ALT 16
12 week labs: VL UD, AST 23, ALT 14
2 wk EOT: VL UD
12 wk EOT: VL UD, AST 22, ALT 13 =  SVR 12! Yay! 
Last hep appointment: VL UD, AST 19, ALT 12 = SVR 39! I AM DONE!

Offline FutureThinker

  • Member
  • Posts: 711
  • Onward and upward!
Re: Hope built up for Harvoni, just crushed by 2nd GI and Express Scripts
« Reply #6 on: May 25, 2016, 01:22:21 pm »
The patient advocate info is under "Considering Treatment", topic "External Review Success!" dated 11-10-15 by Coach Mike.  Coach Mike found this person to be extremely helpful in getting his denial overturned.  FT
Logged
Treatment naive
Likely contracted mid-70s
Diagnosed 1a, 2011
F1-2
Harvoni X 12 weeks, completed 5/17/16
Pre-treatment: VL 3 mil, AST 64, ALT 84
4 week labs: VL 30, AST 21, ALT 14
8 week labs: VL UD!!!, AST 22, ALT 16
12 week labs: VL UD, AST 23, ALT 14
2 wk EOT: VL UD
12 wk EOT: VL UD, AST 22, ALT 13 =  SVR 12! Yay! 
Last hep appointment: VL UD, AST 19, ALT 12 = SVR 39! I AM DONE!

Offline FutureThinker

  • Member
  • Posts: 711
  • Onward and upward!
Re: Hope built up for Harvoni, just crushed by 2nd GI and Express Scripts
« Reply #7 on: May 25, 2016, 01:29:41 pm »
Here is the post w/ the trial VL numbers: Under "Living with HCV", topic "Trial participant, vierkapak+weight based riba", on 2-18-16 by Hepsub.  Check it out, it's amazing!!  FT
Logged
Treatment naive
Likely contracted mid-70s
Diagnosed 1a, 2011
F1-2
Harvoni X 12 weeks, completed 5/17/16
Pre-treatment: VL 3 mil, AST 64, ALT 84
4 week labs: VL 30, AST 21, ALT 14
8 week labs: VL UD!!!, AST 22, ALT 16
12 week labs: VL UD, AST 23, ALT 14
2 wk EOT: VL UD
12 wk EOT: VL UD, AST 22, ALT 13 =  SVR 12! Yay! 
Last hep appointment: VL UD, AST 19, ALT 12 = SVR 39! I AM DONE!
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