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Post Info TOPIC: Harvoni Urgent Appeal


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RE: Harvoni Urgent Appeal
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I am going to do the clinical trial. I faxed them all of my medical records, since 2003, 72 pages,  They are going to call me tomorrow. It is suppose to start next month. It is only a 2 hour drive. I am tired of trying to get approved for harvoni, a lot of BS. I know they will take much better care of me at the trial. It is with The Texas Liver Institute in San Antonio, Tx. I live in Corpus Christi, Tx Thank you everyone for your support, and great advice. It is very much appreciated.



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John Shutts
LC


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johnsshutts wrote:

I am so tired of all the BS, trying to get approved for harvoni. I think I am going to do a clinical trial with Sovaldi, and another new medicine. It is suppose to cure all genotypes. I just hope I get the real stuff the first time. Don't want to do it for an extra 3 months. The trials are suppose to start next month in S.A., and all over the US. I will keep you all posted. You all have a great day.


 Good deal.    You will probably get paid to take better medicine than what's currently available. 



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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! 



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Hey John

That would be an excellent trial to get in on, and if your Clinical Trial site would be The Texas Liver Institute  in San Antonio  that would even be better. Dr. Lawitz and Poordad are the best ever in HCV

How did you hear about it? I would not mind that one

matt



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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! 



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http://clinicaltrials.gov/ct2/show/study/NCT02201940#contacts



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John Shutts


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I am so tired of all the BS, trying to get approved for harvoni. I think I am going to do a clinical trial with Sovaldi, and another new medicine. It is suppose to cure all genotypes. I just hope I get the real stuff the first time. Don't want to do it for an extra 3 months. The trials are suppose to start next month in S.A., and all over the US. I will keep you all posted. You all have a great day.



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John Shutts


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Julia is waiting for Harvoni too.  She found a specialist in New York who speaks Chinese.  She will take Harvoni for 12 weeks.  Now we just need to find out information about getting our copays and prescription copays funded the the drug company.  Anybody know anything about this?  thanks, and the best to the others undergoing treatment.



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Julia, age 57, Hep C, genotype 1b, just diagnosed.  Hoping to start new medicine.

 

LC


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Have you considered doing a clinical trial?

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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! 



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Waiting on second appeal for harvoni. It was sent snail mail last Tuesday. My first appeal was sent two day federal express. I guess they want to move slower, and slower. I called my insurance this morning, and they don't have it yet. It will be five weeks this Thursday, that I have been waiting for my harvoni. I just want to be cured of this terrible disease! I am checking on some clinical trials, probably my last hope. The VA will not treat me, and my federal government insurance will not treat me. I been working for 42 years, and this is how I get treated, just like a lot of us, it is a shame. Still staying positive. God bless all of you. You all have a great week.



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John Shutts


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Persistence will pay off in the end! Keep up the good fight. We are here for you.

G Man



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Geno 1b, compensated cirrhotic, 54 yo, prior null responder. Pre tx VL approx 595,000, tx with Sovaldi/Olysio (no Riba) started 1/8/14. VL 40 @ 2 weeks, UND @ 4 weeks. Still UND @ EOT + 1 year.

Gator Man SVR12, Dragon 0, Final Score.

Ro


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John,

That's the spirit! Do not give up!  The end results will be worth it.  Please know positive energy continues to be sent your way!

Ro

 



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I filled out the paperwork for Gilead support assistance, and paperwork to fax to The Liver Institude in San Antonio for a clinical trial. It is one of the best in the world. I am also waiting on my second appeal for Harvoni. I am not going to give up. You all have a wonderful weekend with your families.

 
 


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John Shutts


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I drove 5 hours round trip yesterday, from Corpus Christi, Tx. to Harlingen, Tx. I was very excited, until the doctor at the VA clinic denied me treatment for my hepatitis C. They will not treat me with any medicine. Wow, I am a disabled vet! The VA doesn't want to fork out the money for treatment too, unless I have cirrhosis. The doctor told me to come back in six months, hopefully I will have cirrhosis, so i can be treated! Even with cirrhosis, they are not treating all patients. My federal health insurance denied me treatment with harvoni, and now the VA will not treat me with any medicine. Back to the drawing board. I will stay positive, and not let this get me down. You all have a great day, and a beautiful weekend.



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John Shutts


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Hope this works out for you John, we'll be praying you.   Be safe 



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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.



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johnsshutts wrote:

I am taking all of my paperwork. A 2 hour drive from Corpus Christi to Harlingen, Tx. I will keep you posted.


If plan B doesn't work there's still 24 letters left in the alphabet. Urah! (& hugs) ~ Rudi



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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



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Good Luck,,, Drive safe , dont let the anxiety distract U..... Michaele



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MDodrow


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I am taking all of my paperwork. A 2 hour drive from Corpus Christi to Harlingen, Tx. I will keep you posted.



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John Shutts
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I'm anxious to hear what news you get from your VA doctor. Go in there prepared for everything. If you have your previous lab results, genotype information, everything, take it with you. Document any questions you have and take it with you. The VA has a significant discount with Gilead and they have been approving a lot of Veterans for treatment. We are a large section of the US population that are HCV positive and it may be secondary to the air gun injections back in the 70's, I don't remember when they stopped. But they have been approving a lot of people for treatment. Let us know what you hear tomorrow and best of luck!! You deserve this, go and get it!!

Tig



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Tig

68yo 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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 Just got a call from the VA. I have an appointment in the morning to see their hep c doctor. I think I have a better chance getting treated through the VA. I am tired of all of this red tape. I am on my second appeal for harvoni. I will keep you all posted.

 



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John Shutts


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Hey John

I'm pulling for you on your 2nd appeal, sometimes this takes time and struggle to get done.

matt



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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! 



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My doctor sent in my 2nd appeal for harvoni, Friday. I been waiting for my harvoni since Oct. 16th, hopefully soon. I will keep you all posted. You all have a great day, and a wonderful week. You all are in my prayers.



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John Shutts


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Hey John,

I know first hand how awful it feels to be denied by this insurance company. You will get treatment and be done with this nightmare. Like Tig said, we are here for you and try to stay positive until this works out. I can't wait until the standard of care changes so these new meds become reality and everyone can get treated.

Let us know what the VA says. Keep us posted, friend.

-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!



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John,

Try to hang in there, I know it's terribly hard to be patient when you are literally sick and tired of waiting.  I know you will get treatment one way or the other.  It's the uncertainty that can be the biggest challenge. 



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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!  

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Hey John,

I think you're going to have better luck with the VA. They have been there for me and have helped me when nobody else would. As a fellow disabled Vet, first, thank you for your service and if I can do anything to help you along, let me know. Please do your best to remain positive and keep your goals in sight. We'll get there Brother, have faith...

Tig



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Tig

68yo 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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I took all of my paperwork to the VA today, disabled vet. I have an appointment at the end of the month. I have a much better chance for treatment with the VA. I tried to use my private insurance first, but it didn't work out. I am on FMLA because I am weak, tired, and achy a lot from my hep c, but my insurance doesn't care. I don't meet their guidelines for harvoni. They told me I can appeal again, waste of time. I am tired of fighting with them.

    Urgent appeal denied. My doctor is going to appeal again, with my FMLA paperwork included. I really got their attention when I told them I took all my paperwork to the VA, and I have an appointment on the 25th. I am glad that I have options.



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John Shutts


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It's true, Harvoni is but one potential cure, there is a shed load of new drugs coming

down the pike as I type. This is what I am holding out for & like me, your liver seems to be in a good condition, so we have a bit more time than some of the other individuals here"thank god"! LC 99% of my idiotic behaviour was alcohol induced, so glad I quit boozing many years ago. Ps,don't skin Isis!



-- Edited by Angel67 on Thursday 6th of November 2014 08:50:42 AM

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LC


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I am so sorry to hear that John. I hope you take comfort in some of the success rates of other meds.  It will happen for you, one way or another.  http://hepcfriends.activeboard.com/t58926374/lets-talk-about-non-harvoni-treatments/

Remember there's more than one way to skin a cat! (Hear that my little friend Isis? wink)



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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! 

LC


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Angel67 wrote:

Tig that is the perfect reply to me! LC, I to feel somewhat guilty as my own stupid behaviour led me to this virus, okay, I was young and the virus was unknown...but I was still an idiot. As for god,well I am old enough to know this isn't the time or place to question a persons religion, for that I apologise...if faith gets you through this, then that's not a bad thing, I just don't have any and can't find any.



-- Edited by Angel67 on Tuesday 4th of November 2014 05:50:01 PM


 

Well, we are in the same boat as far as stupidity buddy.  biggrin  I believe there is a God of sorts, just not the one pictured in the old Testament.  I personally think God guided evolution.  The last church service I attended was over in your neck of the woods.  West Minister Abbey.  I agree though, faith can be a comforting thing, but your right that it's probably not a topic for this forum...



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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! 



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I am so aorry to hear this John. I know how hard you have been trying to get this. Keep your spirits up. When all the other stuff is approved watch the price wars begin.


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64 yo Diagnosed in 1991 with Hep C, Genotype 1a, VL close to 16,000,000, Tx Abbvie Topaz II 9/5/14, Wk 2 and 4 und. End of treatment 11/27/14 undetected.  EOT+4 und  EOT+12 und.  EOT+24 und CURED, EOT +52 now I feel really cured.



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Hey John

I feel your pain, but your future has not been written yet. You have a lot more water to go over the dam before before it runs dry.

The insurance jerks will have to relent in the coming months and allow treatment so hang in there and keep yourself as healthy as possible, because your day for treatment is coming.

matt



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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! 

Tig


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Hi John,

If you're a service connected Vet, the VA is an excellent possibility to obtain one of the new DAA's. Keep your spirits up ahead of that appointment. I was already on treatment when I saw the VA for some service related issues and they were prepared to take over my care if needed. Fortunately I achieved SVR via my civilian coverage and didn't require their help. So keep your spirits up, they have an excellent HCV program in place for Veterans!

Tig

PS: Your annual income with the VA is irrelevant...



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Tig

68yo 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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I hear ya, John. You will get tx in good time. We all will, it's just a matter of when. In the meantime, it's frustrating to see our insurance plans deny most prescriptions and everything (in addition to HCV meds) is now under review for me and my family as of late. 

Higher premiums, higher deductibles, and less benefits seems to be the new norm. Good luck and try to stay positive.

-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!



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Had BCBS for 11 years, loved it. Doctor stopped taking it last year, had to switch. Probably will have to wait for the new meds, thanks.



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John Shutts


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Sorry to hear this, John. This doesn't surprise me considering you have the same insurance as I do. GEHA (United Health Care) didn't approve my tx either.

Try to stay positive that Abbvie and/or Merck will under-cut Gilead for their new meds that should be approved any day now (Abbvie). In the meantime, keep sending those appeals to our crappy insurance co. Do you have an "open season" to change insurance companies?

November 10 is my open season and if I were to relapse, I would change to Blue Cross in a heartbeat. Hopefully you have this option?

Hang in there, John. We're routing for you!

-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!



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I am between stage 1 and 2, with a little scarring. I need to be between stage 3 and 4 to qualify for harvoni. I am geno 1a, with about 7 million viral load. I was on peg and co-peg for 14 months, 10 years ago, not cured. My viral load was 500,000 after treatment. It's climbing every year. I am on FMLA, very weak, tired, and achy a lot, ect. But, I don't qualify for harvoni.

 I did call my doctor earlier, and ask them if they can put me on something else. I also have an appointmrnt with the VA at the end of this month, disabled vet.



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John Shutts


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I don't qualify with Gilead. My wife and I make a little over $100,000.00 a year, on well.


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John Shutts


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John, God Bless You, my heart breaks for you and all who are at wits end with this.  Micheale



-- Edited by Michaele on Thursday 6th of November 2014 12:57:29 AM

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MDodrow


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My urgent appeal for harvoni just got denied. Lost for words right now.



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John Shutts
ss


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confuseHey, I feel the same. Stupid or just didn't give a sHpt. But costs will come down. I feel like a real idiot putting myself in this place. Its been a life change.   I feel yah... Steve



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Harvoni Started - November 23 2014

Geno 1b  Cirrohsis started incivek October 13, 2011 ended incivek on January 5, 2012

 FAILED

6 months Undetectable! 

8 months UNDETECTABLE

Last Shot Sept 7 2012.

Last Ribo Sept 13 2012

Graduated now to Post Treatment

  

 

 

 

 

Tig


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Hi Angel,

I'm glad I was able to provide something "perfect" to you! Perfection is difficult to achieve and should be enjoyed when reached, lol! I have to agree that the discussion of religion and politics can be dicey, especially in an open forum like this. To do so can invite opinions and positions that can be both warming and chilling in nature. I find it best to believe in yourself and the good, positive things that both inspire and give you the strength needed to continue, whatever that is. I believe we can all agree with that...  We are in this together! Good luck my friend...

Tig



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Tig

68yo 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 that is the perfect reply to me! LC, I to feel somewhat guilty as my own stupid behaviour led me to this virus, okay, I was young and the virus was unknown...but I was still an idiot. As for god,well I am old enough to know this isn't the time or place to question a persons religion, for that I apologise...if faith gets you through this, then that's not a bad thing, I just don't have any and can't find any.



-- Edited by Angel67 on Tuesday 4th of November 2014 05:50:01 PM

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Tig


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Hey Angel,

In response to your post, this applies:

If God brings you to it, he will bring you through it.

Tig



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Tig

68yo 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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LC


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Most of us probably "blessed" ourselves with poor life decisions. I know I did. I've forgiven myself, but I don't let myself forget how I got here. I knew better, I just didn't give a $hit at the time... cry

I also feel a bit guilty that those who came by this disease through more innocent means than IV drug usage, have more of a stigma attached to HCV as a result.  Not to mention the financial burden the cost of our treatment will place on the system.  I can kick my own self in the butt because God didn't have anything to do with how I got this.

 





-- Edited by LC on Tuesday 4th of November 2014 05:15:41 PM

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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! 



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God blessed us with HCV....nice one god!



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Still waiting on a decision for my urgent appeal for harvoni. It was sent out to an outside source Friday, for further review, to see if I meet the guidelines. I guess they want a second opinion? It sounds like Express Scripts is stalling. I will keep you all posted. You all have a great day. God bless you all.



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John Shutts
Ro


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Prayers being said for ALL of us!  Hopeful everyone gets the treatment that works for them!



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I wll let you all know if my urgent appeal for harvoni gets approved this week. I will not let it get me down. You all are the best, thank you so very much. You all kept my spirits high. Have a wonder Sunday. God bless all of you.



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John Shutts


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Prayers going out for you john and actually everyone. We're all in the same boat. Life jackets for everyone. I wish I knew the real criteria on who can use which prodical. My Doc said that if Harvoni doesn't work for me in 12 weeks, I can't just do 24. I don't understand why not.
Hope you get good news John.
Jen

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Gen 1a -  treatment naive  HepC since mid 70's

started Harvoni 11-06-2014   for 12 weeks

13,000,000 VL to 50 VL in just 4 weeks- 

Post TX Labs 5/5/15 Undetected! CURED!!

 



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Hey John 

We are all pulling for you John as the appeal process is adds a level of stress, it at least is moving forward the the goal. The Support Path will back you up and that also helps and gives a lot of comfort and stress relief in this time of uncertainty.

matt 



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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! 



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I think my next step, will be the VA. I am a disabled vet. I am using the support path. They are so busy, hard to get a hold of now. And, I'm sure the competition will bring the price down, Competition is always good for the consumer. 

AbbVie heads to the FDA with its hep C combo in a race with Gilead, Merck



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John Shutts


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I will say a prayer for all of us. We all so want to be cured!



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