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Post Info TOPIC: Harvoni Urgent Appeal
Josh Haynie


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RE: Harvoni Urgent Appeal
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good for you John ... my gastro told me the same thing will proabably happen to me in the fact they will deny... we appeal and if they deny a 2nd time then you can do the gillead support path... 

 

so i hope when that time comes for me in January or Febuary that i can be as succesfull as you are in getting TX... minus any stress of wondering :)

 

whether iLL get it or not... theres always a chance i wont get TX... but i think between Abbie V and Gillead i will get sumthin here sooner then later....

 

 here wishing you NO side effects at all in you Harvoni TX..... 



__________________

genotype 1  HCV 4,958,318 iu/ml    HCV Log updated soon  iu/ml------5'10 135lbs 9-15-83  genotype 1 since 2002----Pendleton,Oregon
mallani


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Hi John,

Great to hear you'll soon be getting your Harvoni.

BTW, revaccination for HBV is common as the antibodies may only last for 8-15 years. I also had my course of Twinrix after SVR as I had no antibodies to HAV or HBV.

Over here, the VA sounds pretty similar. After I turned 70 y.o., I eventually got a letter saying my HCV was now accepted as Service-related (Vietnam 1969). They had not accepted it for 15 years!  I now have a Gold Card, which means they pay for all my medical costs.

Various studies showed high rates of HCV in ex-servicemen (particularly from Vietnam). Air-gun vaccinations and the high rate of IV drug use (in Vietnam) both contribute to this.

In the USA, the VA has a lot of clout. They will negotiate a significant discount for Harvoni. It takes time, but the VA should soon take care of it's members.



__________________

Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
Brownie


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johnsshutts wrote:

I just received a call stating that my second appeal got denied for harvoni. I told them that is ok. I will receive my harvoni tomorrow from support path. They thought I was going to be upset! Tomorrow is the big day! I wish all of you the best. Happy Thanksgiving with your families. I will have turkey in one hand, and harvoni in the other! I will be singing turkey and harvoni.

 

 What great news! I just love Gilead. My insurance denied me twice in January for the off-label S/O & finally approved it on the third try. Persistance beats resistance.  Then I contacted Gilead who reduced my monthly cost to $5, even less than Janssens copay of $25. (I'm still Undetectable @SVR-24) I do have cirrhosis & am one of those hoping to see liver improvement in future tests.

 I'm not on Facebook but do like to play Words w/Friends, Dice w/Buddies, Scramble, Ruzzle and Draw Something. I also like Just2Words which you play alone. All of these keeps my brain working and in good shape. During and after treatment, the mind works a bit slower and I'm still trying to get back up to par. It might be the same on Harvoni? 

 Again, congrats on getting the cure!

 

 



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Angel67


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LC wrote:

I'm so happy for you John! My oldest son is off serving as a medic right now, and I think it's shameful how the country can treat it's veterans at times.

 Ex-serviceman are neglected here too. A higher than average percentage of them end up homeless . Just recently one disabled old soldier literally died of starvation . His benefits had been cut to zero and there wasn't  any food in his apartment, the power had been cut off too. We are even letting extremists into the UK who will attack these boys if they can, they almost beheaded ( after they ran him over and disembowelled him) a young squaddie in broad daylight the other year, . Not much reward for putting your life on the line.



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LC


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I'm so happy for you John! My oldest son is off serving as a medic right now, and I think it's shameful how the country can treat it's veterans at times.

__________________

Genotype 1a, VL 1,151,923.  51 years old.  Started treatment on AbbVie TOPAZ II clinical trial Oct 10, 2014!  Undetected at weeks 2 and 4! 
Angel67


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You got your pills then...sorted, good for you. Maybe the "Big Guy" was listening after all?



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johnsshutts


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Thank you everyone. Happy Thanksgiving to all of you and your beautiful families. God bless each and everyone of you.

 



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John Shutts
Groupergetter


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Congrats John on getting started. biggrin   Knowing you, and your family are having a blessed Thanksgiving holiday. 



__________________

1b  Int/Riba relapse @ 48 weeks.  Stop tx Peg Int/Riba 12 weeks ill. Relapse S/O 6/23/14 :(   Started Harvoni 11/12/14  EOT 4/28/15.  EOT+4 UND :)  SVR! 8/4/15  :)     Thankful for every morning.
Mugsy


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johnsshutts wrote:

VA doctor has me doing the series of 3 hep b shots again. I did them over 10 years ago. I guess it is better to be safe. Anyone else what too do them again?

 Hey John. Glad you have finally started your medicine. I also had to redo one HepB shot. Guess if you had your immunization done too long ago, the immunity to HepB goes away.



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62 y/o F     Genotype 1b  for 40+ years    cirrhosis    Started Harvoni  on 11/23  for 12 weeks       UND  12/22/2014     Ended treatment on Feb 15th.

12 week's EOT viral load      <15 
johnsshutts


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VA doctor has me doing the series of 3 hep b shots again. I did them over 10 years ago. I guess it is better to be safe. Anyone else what too do them again?



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John Shutts
johnsshutts


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I took my first miracle pill harvoni at 4PM yesterday. Feeling a little brain fog, a bit achy, and a little tired. All and all, not bad at all. I can deal with this for 84 days. I will be cured of this deadly, and terrible disease. A lot of us have been waiting 10 years or more to be cured. A lot of you are still waiting, and I am so sorry for all of you. I want all of us too be cured. I wish all of you and your families a very Happy Thanksgiving. God bless each and everyone of you.



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John Shutts
Tig


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Congratulations John! Lord knows you've fought a hard and righteous fight to get to this point and we're all thrilled for your great news! Good luck and Happy Thanksgiving to you and your family!

Tig



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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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Harvoninme


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Awesome news!  Have a wonderful holiday, HarvoninJohn!



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johnsshutts


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I just received a call stating that my second appeal got denied for harvoni. I told them that is ok. I will receive my harvoni tomorrow from support path. They thought I was going to be upset! Tomorrow is the big day! I wish all of you the best. Happy Thanksgiving with your families. I will have turkey in one hand, and harvoni in the other! I will be singing turkey and harvoni.

 



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John Shutts
RudiRoo


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I hear the Rocky music playing for you - Congratulations! 



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Hep C since 1982, GT IL28b CC, tx naive, VL 2.5M, normal liver panel, Hepascore F-0, A-1. Sjogren's, Hashimoto's, Raynaud's, etc. SOT S/O 12 wk tx on 10.28.14. EOT 1.19.15. HEP C FREE AT LAST! 4.29.15
johnsshutts


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I called support path and my harvoni is being shipped UPS next day air from Florida to Texas. I faxed them the paperwork Friday, and faxed them the doctor's portion yesterday. They approved it on the spot, amazing. I am in a complete daze!



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John Shutts
johnsshutts


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Thank you all so much for your great advice and a lot of support. You all have a Happy Thanksgiving with your beautiful families. I can finally rest and enjoy my Thanksgiving with my beautiful family. Each and everyone of you are in my prayers. God bless all of you.



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John Shutts
Cinnamon Girl


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Wonderful news, John, it`s been worth all the struggles and waiting in the end! It might not have gone the way you planned it but the main thing is that you`ve finally got your approval for Harvoni...fantastic and I`m very pleased for you!

Happy Thanksgiving!  biggrin



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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.

 

 
johnsshutts


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It was a lot of hard work and stress, for over 5 weeks. But, I finally got approved for my harvoni from support path. I didn't want to go this route. I wanted my health insurance to pay for it, oh well, I got it. I still will not believe this, until the harvoni is in my hands, and going down mt throat! My household income is below $100,000.00. I will miss over 25 days on FMLA, without pay. My wife will not get her Christmas bonus until next year. So we managed to keep it under $100,000.00. Thank you all so much for your great advice and a lot of support. You all are my wonderful second family. You all have a Happy Thanksgiving with your beautiful families. I can finally rest and enjoy my Thanksgiving with my beautiful family. Each and everyone of you are in my prayers. God bless all of you.



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John Shutts
TazKat


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yay!!!!  Happy thanksgiving!!!!



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TazKat Genotype 1A null responder x 3 riba & iterferon twice, relapsed from Incivek 2012 with only 12 weeks left to do. stage 4 mild cirrhosis 4/25/2014/ started sovaldi riba & interferon.. finished treatment 7/17/14  results 7/25  cleared..

 

 
Fireman Rob


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Awesome News John,

I'm glad Support Path is helping you. Let us know how tx goes. 

-Rob



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Age 33, Male. GT-1 for ten years. Diagnosed in March, 2014.

Treated with Sovaldi/Olysio: SVR 24 on February 16, 2015!
Groupergetter


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Congrats John, in most instances I would advise continued follow up.  Things often have a way of falling thru the cracks.  I really think in your case both your doc and Gilead will take care of you.  Quite sure Matt or Jen will hold you a window seat.   biggrin    Enjoy your Thanksgiving.  



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1b  Int/Riba relapse @ 48 weeks.  Stop tx Peg Int/Riba 12 weeks ill. Relapse S/O 6/23/14 :(   Started Harvoni 11/12/14  EOT 4/28/15.  EOT+4 UND :)  SVR! 8/4/15  :)     Thankful for every morning.
Ro


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Wishing you all the best, John!  Positive thoughts your way!



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johnsshutts


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Finally after over 5 weeks, great news! I got approved for the Gilead Support Path  Assistance today for Harvoni! It happened very fast. I faxed them the paperwork Friday. I faxed them the doctors section this morning. I called them back to make sure they received it. The lady said let me prequalify you right now, and I was approved. My doctor already has it. He just has to send the prescription to them. Gilead said the pharmacy will call me before they send it. I also got called for the clinical trial today. It is with Gilead, Sovaldi & GS-5816 for 8 weeks. I don't like the idea of only 8 weeks. My harvoni is for 12 weeks. The trial starts in Feb. or March. I think I will go with the harvoni! I will keep you all posted.


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John Shutts
Harvoninme


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Nice article on the current state of HCV TX politics. Thanks. Wishing you a speedy approval and will keep an eye on your progress. Please keep us posted.

 



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johnsshutts


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Update: Faxed support past assistance yesterday, they said they are three days behind. Waiting on second appeal for harvoni, insurance received it two days ago. Waiting on the clinicla trial in S.A., suppose to call me yesterday, left message. My wife was told last Wednesday that they don't need as many people for the trials. I think I will get approved for the assistance. I could of sent them the paperwork on Nov. 7th, when I lost my 1st appeal on Nov. 5th. My doctor's office told me I have to wait for 2nd appeal. I talked to support path yesterday, and they told me they have been waiting on the paperwork. I faxed it right away. I am going to have a relaxing weekend now. You all do the same with your families. God bless all of you. You all are in my prayers.



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John Shutts
Matt Chris


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Hey John

I get it John, you would think people would just "do there job" with some consistent proficiency. I realize that its not a assembly line type of job, but please just follow through on what your suppose to do. Is seems the medical field only moves at a good pace when its a emergency. I have also been put on the back burner more times than the refried beans.

I really like your idea about getting it exposed in the media, this could motivate some agencies to reconsider there position.

matt       



-- Edited by Matt Chris on Saturday 22nd of November 2014 04:31:12 AM

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"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 
johnsshutts


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Thanks Rob, I am going to give it a rest, and enjoy my weekend, take care.



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John Shutts
Fireman Rob


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John, reading your posts is so similar to my experience that it's ironic. Everything happened in two week increments in addition to always happening on a Friday, holiday, or the doctor's vacation out of the country. Lol

Try to not stress, easier said than done I know but just know it will work out. 

Hopefully you have some fun weekend plans to take your mind off it all.

-Rob

 



__________________

Age 33, Male. GT-1 for ten years. Diagnosed in March, 2014.

Treated with Sovaldi/Olysio: SVR 24 on February 16, 2015!
johnsshutts


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I faxed the paperwork to Gilead Support Path for assistance. They said they talked to my doctor's office on Nov. 7th, and told them my appeal was denied, and that I qualify for assistance. No one told me this. I took the paperwork to my doctor last Friday, and they told me I have to wait for the second appeal to be denied. Gilead said they would contact my doctor, so they can fax their part.  I called my doctor's office and they try to sugar coat all of this. They said they are doing their best to assist me. All of this crap always happens on a Friday. This all started 5 weeks ago.



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John Shutts
Fireman Rob


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John,

My gov insurance was the same way with Sovaldi. Why won't your doctor sign your Support Path application? I know first hand how you feel. Give it time. It took three months for my second denial to become reality through GEHA. Hang in there.

Good luck on your tx journey. I'll be following your progress.

-Rob



__________________

Age 33, Male. GT-1 for ten years. Diagnosed in March, 2014.

Treated with Sovaldi/Olysio: SVR 24 on February 16, 2015!
Miss B


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John,

Your second appeal to your insurance may be approved. It seems that the first strategy of the insurance companies is a denial to try to delay treatment. Very often it seems like the reason for denial is chosen at random. They hope you will go away & quietly wait until there is a generic Harvoni.  Your contacts with the media will draw attention to the issue of withholding treatment from Veterans. I believe your persistence will pay off for you and for others. It's that "squeaky wheel" situation. It's not right but that's what it looks like to me.



-- Edited by Miss B on Friday 21st of November 2014 02:21:48 PM

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Miss B
56 years old. Genotype 1B, previous treatment with interferon 1994. Started Harvoni 12/8/14. After 2 weeks, VL dropped from over 4 million to 496. At 4 weeks, undetected, but at 8 weeks, <15 mL (detected), at 12 weeks/EOT UND!  
johnsshutts


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I e-mailed CNN, Fox, and all three of my local tv stations, two days ago,  to let them know what is going on with a lot of us. I e-mailed them both articles that I am in. I also told them that my federal government insurance denied me harvoni, and the VA denied me treatment.This needs to get out there, for a lot of us. I will keep you all posted.



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John Shutts
johnsshutts


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I filled out the Gilead Support Past Assistance form last Friday. I took it to my doctor's office,too have them fill out there part, and have the doctor sign it. I was going to fax it in the same day. I was told that I have to wait until the second appeal is denied. Why would the insurance approve my second appeal if I do not meet the guidelines? I am between stage 1 & 2, with a little scarring. I am geno 1a, with a 7 million viral load. I was on interferon and ribavirin for 14 months, 10 years ago, pretty rough ride, while being a supervisor with TSA. I read where after two denials you can get the assistance. Insurance received my second appeal for harvoni yesterday. Also, suppose to hear back today on the clinical trials starting up the 3rd phase for Gilead and Abbvie, in San Antonio, at The Texas Liver Institute. My wife talked to the lady Wednesday, and she told her that they don't need as many people, don't know what happened. They showed two trials for Gilead, 240 people, and 600 people. I don't know how many people for Abbvie. Now they don't need as many people? The VA referred me to the trial, because they denied me treatment. I am a disabled veteran. I am not having very much success, trying to get cured of this terrible disease. Not with harvoni, or any other medicine. I have been fighting this for five weeks. It has really wore me out. Sorry to bore you all with this. I needed to get it off my chest, thanks. I will not lose hope. You all have a great day, and a wonderful weekend with your families.



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John Shutts
johnsshutts


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Anyone that wants to be my friend on my FB page, can send me a friend request. I would be happy to have you on my FB page. You all have a great night, sweet dreams! John Shutts, Corpus Christi, Tx.



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John Shutts
johnsshutts


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I am in this article! http://www.liverdoctor.com/hepatitis-c-breakthrough/?utm_source=iContact&utm_medium=email&utm_campaign=Liverdoctor+Health+News&utm_content=LD+18.11.14



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John Shutts
johnsshutts


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My second appeal was mailed last Wednesday.  My doctor will not fill out his part of the Gilead assistance paperwork, until my second appeal is denied. My insurance told me today that my second appeal has to be done by me, and sent to OPM. I so can't wait for my clinical trial to be approved, and start. I will find out Friday. I want to tell all of these people, that have been screwing me over for five weeks, where to stick it. Oh, I want to tell them so bad. It really has been a nightmare. Ok, I still am going to stay positive.



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John Shutts
johnsshutts


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My wife  is talking to the person. My wife faxed her paperwork, and talked to her  last Fri, and Mon. The lady is real nice. The VA referred me, that is how I got in so quick.



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John Shutts
Groupergetter


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John, if you have the name and/or phone number of who is supposed to call you, and you haven't received the call by early afternoon it may be good to become proactive and contact them.  If your doc made the referral and you aren't contacted by early afternoon it may be good to call and let them know.   Hope and pray this works out for you.    



__________________

1b  Int/Riba relapse @ 48 weeks.  Stop tx Peg Int/Riba 12 weeks ill. Relapse S/O 6/23/14 :(   Started Harvoni 11/12/14  EOT 4/28/15.  EOT+4 UND :)  SVR! 8/4/15  :)     Thankful for every morning.
johnsshutts


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Gilead and  AbbVie are both doing phase 3 trials. I would be happy with either one. I was told that I will be put me in the one that fits me the best. Suppose to get a phone call today. I will keep you all posted.



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John Shutts
johnsshutts


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A lot of clinical trials for hep c are going on now. I tried one in Houston, and they told me they had a very long waiting list. I guess the word is getting out about clinical trials, because a lot of people are getting denied by their insurance, and the VA. The VA are referring us vets to the trials. I never thought about going to a trial in the past, and never knew much about them. Now I am very excited about going. I think I will get great care, and treatment. I am also helping to cure this terrible disease!



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John Shutts
Isiscat2011


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Tig56 wrote:

Wow, sorry to hear that John. Did they offer a reason or just tell you to forget it? 

 Hi Tig:

The VA is apparently only offering HCV tx to veterans who have severe liver disease--possibly only cirrhotics.  Take a look here:

http://www.hepatitis.va.gov/provider/guidelines/2014hcv/liver-disease-stage.asp

 

Another astute observation from AHF president, Michael Weinstein:

"Gilead's rabid greed has now extended to extracting as much profit as possible from the care of America's service men and women," said Michael Weinstein, President of the AIDS Healthcare Foundation. "As a nation, we have promised the members of our armed forces -- men and women who put their lives at risk protecting our freedoms -- that when they come home, we will take care of them. By charging our VA system nearly $50,000 per person for the treatment of Hepatitis C, Gilead is driving up healthcare costs by billions of dollars which will ultimately lead to the rationing of care for our veterans. Even more galling, Gilead charges the VA $50,000 while it offers other countries the same treatment for approximately $900 per person per year. AHF is calling on Gilead CEO, John Martin to do his patriotic duty by offering the VA the same $900 price it charges India and other countries for Sovladi."

http://www.businesswire.com/news/home/20141023006284/en/AHF-Gilead-Patriotic-Duty-Hep.-Drug-Prices#.VGvn9zCJOuY

 

Interestingly, the VA denies that any cases of HCV have been transmitted via jet gun injections but admits that "it is biologically plausible."  The VA advises that having 10 or more sexual partners or abusing alcohol are risk factors for HCV.  

Naturally, it wasn't the jet gun injections, it was all the booze and sex that caused so many veterans to contract HCV; in other words it was their own fault.  Disgraceful. 

http://www.hepatitis.va.gov/provider/policy/military-blood-exposures.asp

 



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
Miss B


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John, 

That study sounds good, I hope it works out for you!



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Miss B
56 years old. Genotype 1B, previous treatment with interferon 1994. Started Harvoni 12/8/14. After 2 weeks, VL dropped from over 4 million to 496. At 4 weeks, undetected, but at 8 weeks, <15 mL (detected), at 12 weeks/EOT UND!  
Groupergetter


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johnsshutts wrote:

The VA denied me treatment, and referred me to the clinical trial.

http://clinicaltrials.gov/show/NCT02201940

 

 

 

Others seeking tx and meeting criteria should note "Study Locations" to see if this is something you may be enrolled in.  Numerous states in the US, UK, Italy etc. etc.     This could be an opportunity. 



-- Edited by Groupergetter on Wednesday 19th of November 2014 12:37:03 AM

__________________

1b  Int/Riba relapse @ 48 weeks.  Stop tx Peg Int/Riba 12 weeks ill. Relapse S/O 6/23/14 :(   Started Harvoni 11/12/14  EOT 4/28/15.  EOT+4 UND :)  SVR! 8/4/15  :)     Thankful for every morning.
Tig


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"144 participants were randomized to receive the polymerase inhibitor Sovaldi plus either 25 milligrams or 100 mg of the pan-genotypic NS5A inhibitor GS-5816.

A total of 94.8 percent (73/77) of those participants taking the lower dose of GS-5816 achieved a sustained virologic response 12 weeks after completing therapy (SVR12, considered a cure). Meanwhile, 96 percent (74/77) of those who took the higher dose were cured."

http://www.hepmag.com/articles/Sovaldi_5816_2501_25459.shtml

 

The 100 mg dose of GS 5816 provided an awesome response!! Woot!! This is the positive news you've been looking for John. Congratulations again...

Tig



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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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Tig


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Wow, sorry to hear that John. Did they offer a reason or just tell you to forget it? I'm shocked to be honest with you because they've been stepping up in so many areas and they were (are) still following me. The good news is you've been accepted to this trial and one way or another, you will get the treatment you deserve. Hang in there bud...

Tig



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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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johnsshutts


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The VA denied me treatment, and referred me to the clinical trial.

http://clinicaltrials.gov/show/NCT02201940

 

 

 



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John Shutts
Fireman Rob


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Hi John,

This trial looks awesome! And it appears convenient for you. Good luck and please keep us posted on the trial status.

-Rob



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Age 33, Male. GT-1 for ten years. Diagnosed in March, 2014.

Treated with Sovaldi/Olysio: SVR 24 on February 16, 2015!
Tig


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Congratulations John! Glad to hear you've made some progress. I'm curious though, why didn't you wait for the VA's response? Or did they already say something? If they denied you that quickly I'll be very disappointed. I thought you had a good shot with them. Do you know what trial you'll be participating in? Let us know how it goes! Good luck buddy!!

Tig



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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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Ro


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Wishing you all the best with the trial! Sounds like it is with really good doctors.  Care should be good....sending positive thoughts your way!

Ro



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