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Hep C Discussion Forum -> General Discussion -> Harvoni
Post Info TOPIC: Harvoni
Tig


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RE: Harvoni
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Hi Michael,

Welcome to the forum! Please feel free to start your own thread in the On Treatment section or use the Harvoni Train thread there to share your progress. If you start your own thread, we consider it yours and you can post your own updates, etc., to that. I'll give you a couple links at the end here to direct you to some things of interest. Adding your Genotype, viral load, Labs and treatment protocol, start date, you know where I'm going, to your signature line, it helps us know what you're into at a glance. 

You must be talking about Greg Jefferys in Australia. He's quite well known here and while I've never spoken to him personally, I have followed his blog and success stories for quite some time. You were fortunate to get started so easily, but it sounds like you refused to say no and let a ridiculous insurance guideline block your way. Good for you! I would like to hear what restrictions, if any, were made by US Customs. Gilead has been starting to restrict some of the imports of generic medication and I'm sure they've got big brother working on it as well. I know one of the Indian suppliers and he has also told me that it's getting difficult to export these important medications to certain countries. Australia seems to be one of the countries that has helped facilitate access to these meds. More countries need to follow their lead. I believe as long as the supplier is dealing with the Gilead patent agreements on generic distribution, they shouldn't raise too much hell. But it's vital to deal with the proper, licensed professionals in every step of the process. I'm glad you were successful and have a doctor in Wisconsin that will follow your treatment. You're going to do well, it has been very effective. I wish you all the best.

If you have any questions, please ask. Use the options in the Title bar above. The Home page with categories, most recent posts and our search function reside there, among others. Check it out...

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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Michael1037


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I'm a 59 year old guy who NEVER injected drugs, yet was diagnosed with Hep-C just over 20 years ago.  I'm not sure how I got it, but as best as I can determine it must have come from either a center where I regularly donated plasma or from a hospital where I was treated after shattering my pelvis in a traffic accident.  I first received the news from a plasma center that refused to accept my donation. After that I consulted a doctor who took a blood sample and told me that I did NOT have Hep-C and that the earlier test was a false-positive.  I let it go after that, and didn't think about it any more.  15 years later I went to an emergency room after getting a nasty sting from a scorpion, and I was told that I did indeed have Hep-C.  It then dawned on me why, over the years, I had several days each month when I felt like I was coming down with a cold or flu, and had body aches and fatigue for no reason.  I consulted a doctor and learned that the best treatment at that time was AWFUL, consisting of weekly injections and pills, had many unpleasant and possibly deadly side-effects, and was only 60% effective.  I said "no thanks...I'll wait until they come up with something better."  In the past year, though, I could "tell" that the Hep-C was getting progressively worse.  Those "wonky liver days" began to be "wonky liver WEEKS" and I could tell that there were odd chemical imbalances going on in my body.  I had a "minor" heart attack last November, even though I never would have been considered a heart attack risk.  Low, even blood pressure, no weight problem at all, exercised regularly, ate healthy foods, and smoked and drank in moderation.

I knew in my heart (TERRIBLE pun) that the attack was due to the chemical imbalance caused by the way the Hep-C had messed my liver up.  I was unable to afford the bills for the emergency heart surgery, and ended up on a State-sponsored healthcare program here in Wisconsin.  My gastroenterologist prescribed Harvoni because I was Genotype 1 with some cirrhosis.  But she also warned me that BadgerCare, in her experience,  had NEVER covered Harvoni treatment, despite the drug being on their formulary.  The prescription could not be filled without prior approval from the HMO, and the criteria for that approval was astoundingly ridiculous to me.  Harvoni would only have been approved as the third step in a 3-step treatment process---the first two steps being peg-interferon and ribavirin, followed by treatment with Viekira Pack (and more ribavirin) if the first step failed.  The approval, of course, was denied unless I start on that program. But there was just no way that I was going to allow myself to be dragged through such lunacy just because I could not afford the $93,000 that Gilead wanted for a 12-week course of Harvoni, which I knew was all that I needed.

After a lot of research, I met a fellow in Australia---a former Hep-C sufferer---who had started a buyers club and had connections to obtain generic Harvoni from manufacturers in India that were U.S. FDA-approved and under a licensing agreement with Gilead Sciences.  For a total cost to me of $1415, I was AIRMAILED the generic Harvoni, a process that took about 2 weeks.  I had previously informed my doctor of my intentions, and she was very supportive and agreed to monitor my progress while on the therapy.  I had a fresh viral load test, and started taking the pills last week.  I expect all to go well, and for my viral load to decrease until I am "undetectable" with the next 3 months. In the meantime, I am appealing the denial of my prior authority.  My intention is to convince an administrative law judge to overrule the "stepped treatment process" that the HMO required and to order BagerCare to reimburse me the $1400 I spent to obtain the medicine I needed to get myself cured.



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Cinnamon Girl


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Hi Cayo, I remember you very well from the last time you were here, good to hear from you again!! 

And what a rollercoaster ride you`ve been on over the last few years!  Welcome back!!  smile

I`m so pleased you managed to get clean again, it takes a huge amount of determination and will power to do that, and you`ve obviously got what it takes.

Great to hear that you have a good doctor, it makes such a difference, and I wish you all the best of luck with getting your Harvoni approval!

Looking forward to hearing how it goes...  Jill  smile

 

 



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
wmlj1960


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cayohueso1 wrote:

. Lots of times I also don't remember everything I want to ask him. and I have ALWAYS gotten answers and support from you guys.

 I'm the same way. I forget at least one thing every time I go without a list. I recommend writing your questions on paper before your appointment. Out of respect for my doctor I stay 'to the point' because I know he's too busy to talk about irrelevant subjects and in turn I expect him to give me a complete, accurate answer to my questions. If one of my doctors won't do this for me then I quit being nice and start demanding and I look for a new doctor if needed.

 It sounds like you have a good doctor though - memory, maybe not so much...biggrin



__________________

60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

Mike

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cayohueso1


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I will. When Im well and my energy is back. Its just like being clean. Help the newcomer.  WHAT is a signature line??  I obviously have only done the basics or forgotten..  back in a little bit.(take doggie outside



__________________

57 yrs old Genotype 1A. Failed treatment after 5 mos peg and victrelli cocktail. Needed 48 weeks.. Recovering addict and alcoholic. Active addiction for 40 years. Became infected in the late 70s or early 80s. Waiting for approval for 24 wks of Harvoni.
Tig


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Hey Cayo,

Jimmy's right! Great bunch of people waiting to cheer you on. We look forward to following your progress.

Here's some info on creating that signature:

SIGNATURE/ABBREVIATIONS



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

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JimmyK


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Cayo you really are among family here. Not just hype, the real thing and by the way, we will be counting on you to one day be here helping others as well. That is the way it works.

Any time an Insurance Company chooses an exclusive treatment plan it is because of a well negotiated contract. You have all the right things in place.

Would be great if you could update/ create a signature line in your profile.

That will help us help you.

 

;)

 

JimmyK



__________________

Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."
cayohueso1


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Thankyou very much for that. So much stuff and red tape, but I feel like if I can go thru the hell I went thru w peg and victrellis, not to mention the hell I went thru to get my fix as an addict for 35 years, this should be a piece of cake once I start getting all the extra information from you guys...all the stuff I don't talk about at the doctors office. Don't get me wrong, Ive definitely got the best specialist in the keys, the thing is hes the hiv, hep and all infectious disease specialist in the keys and has a gazillion patients. Known him for 30 years long before I found out I had hep. When I visit him, its always about the here and now, and I leave the rest to him. Lots of times I also don't remember everything I want to ask him. and I have ALWAYS gotten answers and support from you guys. Im blessed to have the forum in my life.



__________________

57 yrs old Genotype 1A. Failed treatment after 5 mos peg and victrelli cocktail. Needed 48 weeks.. Recovering addict and alcoholic. Active addiction for 40 years. Became infected in the late 70s or early 80s. Waiting for approval for 24 wks of Harvoni.
cayohueso1


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Wowww!  I am so excited to hear that. I was told that it could take months that it is being submitted to Cigna, and I have to wait for their approval. Hope mine moves as fast as yours did.  : )



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57 yrs old Genotype 1A. Failed treatment after 5 mos peg and victrelli cocktail. Needed 48 weeks.. Recovering addict and alcoholic. Active addiction for 40 years. Became infected in the late 70s or early 80s. Waiting for approval for 24 wks of Harvoni.
cayohueso1


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That's awesome info!  thankyou so very much for taking the time to respond to my sos. I really appreciate it. Gonna check it out when Im done replying to all of you kind people that took the time out of your lives for me, Lots of love Cayohueso1



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57 yrs old Genotype 1A. Failed treatment after 5 mos peg and victrelli cocktail. Needed 48 weeks.. Recovering addict and alcoholic. Active addiction for 40 years. Became infected in the late 70s or early 80s. Waiting for approval for 24 wks of Harvoni.
cayohueso1


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Oh my God, thankyou so much for your response and your friendship. No real family so im the lone ranger in this. Hep c forum is my family and lifeline.  Your post gives me more hope.  How long did it take for you to get approved and if its not to personal, did you have to go thru the insurance hoops and skymed?  Thanks, lots of love, Cayohueso1



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57 yrs old Genotype 1A. Failed treatment after 5 mos peg and victrelli cocktail. Needed 48 weeks.. Recovering addict and alcoholic. Active addiction for 40 years. Became infected in the late 70s or early 80s. Waiting for approval for 24 wks of Harvoni.
JimmyK


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Greetings and welcome home.

Cigna:  "...Catamaran on Feb. 3 said it would offer a new hepatitis C patient management program through its specialty pharmacy, BriovaRx, that features Gileads Harvoni and Sovaldi as exclusive hepatitis C treatment options (DBN 2/6/15, p. 1). Similarly, Cigna Corp., a long-term Catamaran customer, on Feb. 4 said it would offer Harvoni as the only preferred brand drug treatment for customers with hepatitis C genotype 1 infection as well as develop an outcomes-based incentive program.

 

Snipped from ~~>  http://aishealth.com/archive/ndbn0022015-03

If anything like the co pays that Blue Cross Blue Shield has through CVS Pharmacy, I am currently paying $33 a month.  I did not even bother with the coupon that takes it to $5 a month.

http://www.harvoni.com/support-and-savings/co-pay-coupon-registration

(Whoops just noticed my lil sister put the same link up. Use it)

The main thing is with Cigna and being an F4 you should have no problem getting approved once the Doctor submits his or her request.

My approval took six days.

Best of luck to you I am on day 7 and this is a breeze compared to my last ride!

 

JimmyK

 

 



-- Edited by JimmyK on Thursday 21st of April 2016 05:44:03 PM

__________________

Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."
wmlj1960


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Hi Cayo.
 I'm glad you made it back, here and being clean. Being in recovery myself I've seen a few who didn't make it back. Harvoni will be much more effective than your last treatment. I achieved SVR with 24 weeks Harvoni and I am also cirrhotic and also a prior relapser. You can too. I can't help you with the insurance part any more than suggesting the same thing as what you've already been told. I do make a pretty good cheerleader though so once you get started on treatment I'll be here for support just as many more of our members will be. So keep us up to date on what's going on with you and remember the doors around here are always open, fair weather or not.



__________________

60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

Mike

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Tig


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Hi Cayo,

Good to hear from you! It's difficult to know what your insurance will cover since every policy is different. Chances are good that your costs will be minimal. As Wendy mentioned, there are copay coupons available if you qualify. Gilead's payment assistance representatives can assist you with that information. There is a link in my signature to a full list of available payment assistance programs that can help you if needed. Your pharmacist can also provide you with information on the coupons available. Check with them ahead of time.

Let us know how things progress. These treatments are very effective, even for those affected by high stages of fibrosis. Don't let that worry you, this stuff works! Good luck!



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

Signature Line Set Up/Abbreviations   Payment Assistance

 
Mike


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Hi Cayohueso,

I saw what Wendyo posted to you, and I also hope this can help you. We are all there with you in some way, and we are also very much like family in that we support one another. I wasn't able to tell from your earlier posts if you are experiencing fatigue, but I would imagine it is possible that you do. I wanted to suggest the importance of hydration, and maintaining a diet that will give the energy you will need during the day. I am sure you might already know this, but thought I would bring that up just in case you didn't.



__________________

1-18-16 referred to gastroenterologist;  AST 191 ALT 246, Viral Load 1,976,000, Alpha Feto Protein/Negative for Cirrhosis. Genotype 1 a. Tx began 3/9/16 Harvoni, 8-12 weeks

 
wendyo


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Glad to hear you made  it back Cayohueso as you know not everyone does. I have visited the clubhouse in Key West many years ago. Good stuff. 

Approval and cost is different based on your insurance. Mine was fast but different insurance company. I signed up with support path and got a coupon so I only had to pay a fraction of the co pay. Here is a link for that.....

http://www.harvoni.com/support-and-savings/co-pay-coupon-registration

wendy

 

 



__________________

Wendy 53 y/o, DX 1994, geno 1A F1

1999 TX 1 - Inter -non responder 2001 TX 2 - Peg + Riba - viral load tripled and taken off

T3:  Harvoni 12 weeks Sept. 19, 2015 ALT 41 AST 30 VL 541800 UND at EOT and SVR 24 ALT 18 AST 26 platelets 223

 
cayohueso1


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Hi All!  This is Cayohueso 1 and I have been hanging in there for the last several years with my failed 6 month attempt with Peg/Victrellis ****tail. Heavy side effects including relapse after 8 years of being clean and sober.  I stayed out there for 2 years and happy to say that Im 2 and a half years clean again. The company Ive worked for for the better part of 10 years just went corporate last year and I now have Cigna.  Going after Harvoni this time.  New round of tests have me on scale 4. for liver condition and my application is sitting with Skymed. Waiting for the final approval. Needless to say it was a shock, to actually hear the words that my liver is on the highest number for that scale. But I just didn't realize what dire straights this has become..talk about denial..I am praying that im approved , since I now have chirrosis. Need a lot of help emotionally. Does anyone know how long it takes to get approved? I have the best doc in key west, and was told that IF approved, since I have chirrosis and failed prior treatment its 24 weeks for me, cost unknown. Anybody know what I will pay with cigna?? Sorry people, got a lot of junk in the trunk right now. Look forward to any feedback. Sorry ive been just a fairweather friend, it just how I deal with it.



__________________

57 yrs old Genotype 1A. Failed treatment after 5 mos peg and victrelli cocktail. Needed 48 weeks.. Recovering addict and alcoholic. Active addiction for 40 years. Became infected in the late 70s or early 80s. Waiting for approval for 24 wks of Harvoni.
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