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Author Topic: Harvoni Appeal  (Read 118690 times)

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Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Harvoni Appeal
« Reply #100 on: November 19, 2014, 07:51:33 pm »
John,

You are amazing and brave and these jerks better start treating you with the medications you deserve!  I'm in awe of your fortitude and strength to fight publicly like you are. Thank you!!

~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 johnsshutts

  • Member
  • Posts: 97
Re: Harvoni Appeal
« Reply #101 on: November 19, 2014, 10:05:16 pm »
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.

Offline BrightFuture

  • Member
  • Posts: 11
Re: Harvoni Appeal
« Reply #102 on: November 19, 2014, 10:14:15 pm »
Hi all,

I'm new (tonight) on this forum and took my first Harvoni tablet this morning. I apologize in advance for not reading this entire thread, but want to say that with my direct appeal to my insurance company AND my pharmacy advocate, I was approved within hours. That said, my doctor and pharmacy had lobbied on my behalf for three weeks, but with tenacity (and prayers), I was approved.

Keep on, keeping on! I look forward to reading about your victories!

Be well,

Judy

Offline johnsshutts

  • Member
  • Posts: 97
Re: Harvoni Appeal
« Reply #103 on: November 19, 2014, 10:27:17 pm »
That is great news Judy! I am happy for you.

Offline BrightFuture

  • Member
  • Posts: 11
Re: Harvoni Appeal
« Reply #104 on: November 19, 2014, 10:49:34 pm »
Thank you, John. I wish you treatment success, too. God bless. Keep the faith. It's really His timing. I see that now. Good night.

Offline johnsshutts

  • Member
  • Posts: 97
Re: Harvoni Appeal
« Reply #105 on: November 21, 2014, 07:03:31 am »
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.

Offline johnsshutts

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  • Posts: 97
Re: Harvoni Appeal
« Reply #106 on: November 21, 2014, 08:50:00 am »
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.

Offline johnsshutts

  • Member
  • Posts: 97
Re: Harvoni Appeal
« Reply #107 on: November 21, 2014, 01:34:00 pm »
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.

Offline Bucky

  • Member
  • Posts: 341
Re: Harvoni Appeal
« Reply #108 on: November 21, 2014, 03:13:15 pm »
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.

Hi John,
So you are saying that you were approved for assistance on the 7th and your doctor's office dropped the ball? It looks like this is going to work out for you in the end but damn what a mess it has been. 
Sounds like someone needs an a**chewing!
Bucky
I HAVE SLAYED THE DRAGON.....CURED SVR24!

Offline johnsshutts

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  • Posts: 97
Re: Harvoni Appeal
« Reply #109 on: November 21, 2014, 03:30:45 pm »
Yea, I called the doctor's office, and they said they are doing there best! I totally pissed them off, on well!

Offline Majorchas

  • Member
  • Posts: 18
Re: Harvoni Appeal
« Reply #110 on: November 21, 2014, 03:46:34 pm »
I was calling Gilead once a day for a while there, making sure faxes and prescription into were making into the right hands/offices..They were swamped with requests for info and many times the system could not handle all the people on hold.
Best time to call them FWIW seems to be early/mid afternoon Tues thru Thurs...
I also had to darn near sit on my doc's assistants laps to get them to send faxes communicate with UnitedHC in a timely manner.
My doc wanted to know why the hurry?
I told him I had perfected the art of waiting over the last decade but that as of OCT 10, I was out of patience.
No doubt I ruffled feathers there, but so be it.

Offline ak

  • Member
  • Posts: 5
Re: Harvoni Appeal
« Reply #111 on: November 21, 2014, 04:07:24 pm »
Hello.. I've been reading this thread and I am in the exact same boat as John... waiting on the second denial...I appreciate all the info being shared on this forum as it is clearer what my next steps need to be... so happy for you John that your persistence paid off... I likely will call upon you to help navigate me through this maze..thanks all...

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Harvoni Appeal
« Reply #112 on: November 21, 2014, 04:42:20 pm »
Yea, I called the doctor's office, and they said they are doing there best! I totally pissed them off, on well!

You go John! Keep up the hard work and we all know the payoff is going to be SVR! If there is anything I can every do to help you please let me know.

~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 Bucky

  • Member
  • Posts: 341
Re: Harvoni Appeal
« Reply #113 on: November 21, 2014, 05:07:39 pm »
Yea, I called the doctor's office, and they said they are doing there best! I totally pissed them off, on well!
John,
My daddy used to tell me it was better to me pissed off than pissed on!  Any idea how long it will be before you get your meds?
Bucky
I HAVE SLAYED THE DRAGON.....CURED SVR24!

Offline johnsshutts

  • Member
  • Posts: 97
Re: Harvoni Appeal
« Reply #114 on: November 22, 2014, 09:56:08 am »
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.

Offline Bucky

  • Member
  • Posts: 341
Re: Harvoni Appeal
« Reply #115 on: November 22, 2014, 10:12:49 am »
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.

John,
Yes, by all means push this to the back of your mind and enjoy the weekend.
Bucky
I HAVE SLAYED THE DRAGON.....CURED SVR24!

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Harvoni Appeal
« Reply #116 on: November 22, 2014, 10:20:59 am »
Have a great weekend yourself John! Enjoy your family, take some deep breaths and throw some good laughter into the mix, it's the best medicine.

~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 SickTired1

  • Member
  • Posts: 23
Re: Harvoni Appeal
« Reply #117 on: November 22, 2014, 03:46:57 pm »
Progress report:  I received second level denial and opened up an application with My Support Path (MSP)even tho household income is over their limit. I sent a first fax on the 17th with the "appeal file" from UHC and a second fax on the 18th with the signed app from doctor.

I guess all of our experiences are going to be different on this little excursion.

Have to say that UCSF turned around my request for signature from treater in about an hour. Lucky me.  Just received a phone call - today is a Saturday!- from MSP that they couldn't find first fax and would I resend it.  They are obviously working hard on this.  I'm impressed, but not sure my luck will hold out either in terms of them waiving the income restriction or the cirrhosis deciding to progress to de-compensation. 

Whole process is driving me to drink! Just trying to keep a sense of humor. ..
Geno 1A, Il28bTT
Female, age 64
Inf late 60's/early 70's
Dx October 2012
F4, Childs Pugh A
Triple therapy June 2013-May2014 (pegint/riba/telaprevir) Relapsed June 2014
Harvoni/Riba 1200 mg day started Jan 2015

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Harvoni Appeal
« Reply #118 on: November 22, 2014, 06:33:49 pm »
Hey ST1,

Keep hanging in there and advocating for yourself!!! You have a cheering squad backing you up!!

~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 SickTired1

  • Member
  • Posts: 23
Re: Harvoni Appeal
« Reply #119 on: November 22, 2014, 08:26:54 pm »
Thanks, Mel!
Geno 1A, Il28bTT
Female, age 64
Inf late 60's/early 70's
Dx October 2012
F4, Childs Pugh A
Triple therapy June 2013-May2014 (pegint/riba/telaprevir) Relapsed June 2014
Harvoni/Riba 1200 mg day started Jan 2015

Offline johnsshutts

  • Member
  • Posts: 97
Re: Harvoni Appeal
« Reply #120 on: November 24, 2014, 05:54:16 pm »
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.

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Harvoni Appeal
« Reply #121 on: November 24, 2014, 06:35:36 pm »
That's great news John! Your perseverance totally paid off! Now it's time for you to get cured!

~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 Bucky

  • Member
  • Posts: 341
Re: Harvoni Appeal
« Reply #122 on: November 24, 2014, 06:44:48 pm »
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.

YEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEE HAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA!!!!!!!!!!!!!!!!!

I am so happy for you.
Bucky
I HAVE SLAYED THE DRAGON.....CURED SVR24!

Offline Lynn K

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  • Member
  • Posts: 4,544
  • Get tested, get treated, get cured, fight Hep c!
Re: Harvoni Appeal
« Reply #123 on: November 24, 2014, 06:48:09 pm »
Way to go John! Congrats!

You will be done with Harvoni almost before the trial even starts!

Good luck on treatment
Lynn
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline SickTired1

  • Member
  • Posts: 23
Re: Harvoni Appeal
« Reply #124 on: November 24, 2014, 09:00:03 pm »
Great news!  How nice to have a choice after all this, too.  Kathleen (sick&tired1)
Geno 1A, Il28bTT
Female, age 64
Inf late 60's/early 70's
Dx October 2012
F4, Childs Pugh A
Triple therapy June 2013-May2014 (pegint/riba/telaprevir) Relapsed June 2014
Harvoni/Riba 1200 mg day started Jan 2015

Offline badbradley

  • Member
  • Posts: 294
Re: Harvoni Appeal
« Reply #125 on: November 24, 2014, 09:25:59 pm »
Great news John. My hat's off to you for your public presence on this issue. I believe it will continue to have a positive impact. Good for you! You are a fighter!!!
                                                                         Bad Brad
                                                       
Geno 1a
Sov/Oly 12wks - relapse
Har/Riba 12wks
Alt-16  Ast-17 SVR - 12
Alt-15  Ast-14 SVR - 24

Offline johnsshutts

  • Member
  • Posts: 97
Re: Harvoni Appeal
« Reply #126 on: November 25, 2014, 04:42:43 am »

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.

Offline johnsshutts

  • Member
  • Posts: 97
Re: Harvoni Appeal
« Reply #127 on: November 25, 2014, 05:37:15 am »
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.

Offline johnsshutts

  • Member
  • Posts: 97
Re: Harvoni Appeal
« Reply #128 on: November 25, 2014, 09:31:41 am »
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!

Offline Majorchas

  • Member
  • Posts: 18
Re: Harvoni Appeal
« Reply #129 on: November 25, 2014, 10:39:48 am »
I've read a good deal about how Gilead is overcharging for Harvoni (and Sovaldi before that) but I have to say that the level of help I got from Supportpath was outstanding.
I for one feel obligated to shout their praises far and wide..can't wait to find out how many people they supplied with Harvoni for free when the tumult dies down...

Offline johnsshutts

  • Member
  • Posts: 97
Re: Harvoni Appeal
« Reply #130 on: November 25, 2014, 05:01:39 pm »
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.


Offline Bucky

  • Member
  • Posts: 341
Re: Harvoni Appeal
« Reply #131 on: November 25, 2014, 05:23:32 pm »
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.

John,
I am surprised that you did not tell them to stuff something beside the turkey.
Bucky
I HAVE SLAYED THE DRAGON.....CURED SVR24!

Offline johnsshutts

  • Member
  • Posts: 97
Re: Harvoni Appeal
« Reply #132 on: November 25, 2014, 05:30:14 pm »
I am happy now Bucky. I don't want to ruin the moment. Have a Happy Thanksgiving.

Offline Lynn K

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  • Member
  • Posts: 4,544
  • Get tested, get treated, get cured, fight Hep c!
Re: Harvoni Appeal
« Reply #133 on: November 26, 2014, 05:13:28 am »
Wishing you the happiest of Thanksgivings John!
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline BrightFuture

  • Member
  • Posts: 11
Re: Harvoni Appeal
« Reply #134 on: November 27, 2014, 12:05:35 am »
GREAT news, John! Finally! Happy Dance over here for you!!!! Happy Thanksgiving to all! We have much to be grateful for, even with this nasty virus and the b.s. negotiating the system...

Be well,

Judy

Offline SickTired1

  • Member
  • Posts: 23
Re: Harvoni Appeal
« Reply #135 on: November 28, 2014, 08:33:28 pm »
Just got a letter from  Gilead Support Path.  Not eligible due to income.  I have to say I was really impressed with the people who staff the phones, and I knew $150K was over the limit, but I tried anyway. 

So I have insurance that is dragging it's feet on adding it to the formulary and cirrhosis.  with a little sprinkling of depression. 

Will have to hope that company does add it sooner rather than later.  I read, in the business pages, of course, that Gilead has only met 30% of their solvadi/harvoni numbers for the quarter which is probably due to lots of companies pushing back. 

I am most certainly not the only person in this boat.  Need to find more.  What are we supposed to do?  So far I have thought of "sell house" but not enough equity to pay for treatment, and "trial separation" from my beloved, but that seems a little extreme.

Thanks for listening. Advice, anyone?
Geno 1A, Il28bTT
Female, age 64
Inf late 60's/early 70's
Dx October 2012
F4, Childs Pugh A
Triple therapy June 2013-May2014 (pegint/riba/telaprevir) Relapsed June 2014
Harvoni/Riba 1200 mg day started Jan 2015

Offline harvonitoo

  • Member
  • Posts: 20
Re: Harvoni Appeal
« Reply #136 on: November 29, 2014, 12:18:42 am »
can you change insurance? My Blue Cross approved Harvoni and I have been doing it for over a week. I have cirrhosis too. Best of luck I wish I had other advices but this is all I can think of...

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Harvoni Appeal
« Reply #137 on: November 29, 2014, 12:46:01 am »
Hi John,

Hope your Thanksgiving was amazing you finally got to sit back and relax after your battle with getting your medication (pray it's cure and not just medication).

Let us know how you are doing!

~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 BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Harvoni Appeal
« Reply #138 on: November 29, 2014, 01:19:56 am »
SickTired1 and SickTired2,

Don't sell your house, don't give up. You need to look for a clinical trial you can get into and in the meantime continue to push with your insurance. If you open yourself up to options one is bound to come through for you! None of us around here EVER give up!

If you need help finding doctors or places that are engaged in Clinical Trials in your area you can PM me with your city or area to look and I would be more than happy to find the places for you and send you names and numbers you can call. I saw you mention UCSF are you in the city, east bay, south bay? I used to live in the East bay myself.  Here's the info for the UC Davis Program:

http://www.ucdmc.ucdavis.edu/internalmedicine/gastro/clinical_trials.html

We will get you some numbers to call, then you pick up the phone, ask them how you can sign up for an appointment to get into their clinical trial program. Remember it could be a wait or you might have to drive 2 hours to find the place that will help you. Honestly make appointments with as many as you can get to take you in to.  You could even put together a letter and just tweak it for the next place, here's the email for the person at UCDavis: elaura.lester@ucdmc.ucdavis.edu

Here's the email Jackie.Maher@ucsf.edu of the Doctor who runs the liver center at UCSF http://livercenter.ucsf.edu/index.html

Every day when you wake up and have that first cup of Joe, pick up the phone with a smile on your face and call the insurance Company for an update, I'd also ask to be assigned a Patient/Customer advocate to help you. All the big insurance Companies have those now.

Just keep on keeping on, we are here to give you that extra little shove every once on in a while or an ear to listen when you want to holler.

~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 Majorchas

  • Member
  • Posts: 18
Re: Harvoni Appeal
« Reply #139 on: November 29, 2014, 07:00:58 am »
I may be way off base here but if I had been turned down (with no possibility of recourse) I was contemplating going to India or Mexico, or anyplace Harvoni is sold, to be able to buy it at a much reduced price.
One would think that with the latest version of ones bloodwork in hand, an overseas doc would have no problem proscribing Harvoni...?
With airfare included, I think a good credit card or three would cover it...

Offline SickTired1

  • Member
  • Posts: 23
Re: Harvoni Appeal
« Reply #140 on: November 29, 2014, 02:13:32 pm »
Dear Mel, Major and HarvoniToo: 

You guys are great.  You would not believe how cheering it is just to see responses while I am in the midst of my pity party.  Tears in my eyes.  Over the last couple years I've checked out a few forums and found them mostly to be wrong for me for one reason or another.  You are smart, you are loving, you are soldiers!  Thanks for letting me march in your army!  (Actually, I think a lot of you are really actually militarily experienced, huh?)

Anyway - this may answer everyone's suggestions, and for sure it is calming me down writing it!

Technically, I could change insurance (and will have to go on medicare next year) but to be honest,  my husband's employer sponsored plan, even though right now they are being butts, is a really good plan.  I really want to stick with where I am now, which is UCSF - one of the best liver clinics in the country, and the plan has been very good at covering practically everything til now.

That said, I went on the clinicaltrials.gov website last night and found an AbbVie study that I might be eligible for, so I contacted them directly.  They will tell me who and where the study is, so wish me luck on that!   It's in the San Francisco area, which is nice.  Their drugs are looking very promising and will likely present a good alternative to Harvoni, I believe. 

On Monday when she's back in the office I will call UCSF and talk to my nurse practitioner Lisa, or clinic head Dr. Terrault and see about other studies I might get into. Will also go to the UCDavis link Mel provided.

On Monday, and every regular business day, I will call my insurance company and see if they have put Harvoni on the formulary yet, because it is not out of the question that they will add it.  I do have a nurse helper on my file, but she can't do anything about pushing for tx.  I don't think that's the same as an advocate, so I'll have to find out about that.

There are also two pharmacy helpers (one at UCSF Clinic and one who contracts with the hospital).  They've been good, but I feel better taking matters into my own hands at this point.  They still want to know what's going on though, so that's kind of nice. They can take the ball back once I've run my own play.

Now for my favorite:  medical tourism.  I can't tell you how many times I've thought of that.  I'd rather have a huge charge card bill for a trip to some exotic place than for a pill!  I actually know someone that went to Thailand for brain surgery. Worked out well, and now he lives there!

Lastly, I will go to my support group next time they have a meeting.  For awhile, I felt like the strong one, sailing through, no transplants on my horizon, much better off than others, etc.... now, I'm not so sure!  They feed us, too.  Overpriced catering that Gilead pays for.  I will eat a lot this time, if I can just build up an appetite!  ha ha

Thanks, everyone, for your ideas, your support, and just for listening.  I feel much better today!  And may your treatments continue to work work work!

Kathleen
Geno 1A, Il28bTT
Female, age 64
Inf late 60's/early 70's
Dx October 2012
F4, Childs Pugh A
Triple therapy June 2013-May2014 (pegint/riba/telaprevir) Relapsed June 2014
Harvoni/Riba 1200 mg day started Jan 2015

Offline Bucky

  • Member
  • Posts: 341
Re: Harvoni Appeal
« Reply #141 on: November 29, 2014, 02:34:44 pm »
To those waiting on approvals,
I would say that there is going to be a big slow down until after the first of the year when the new insurance period begins. But what bugs me is that anything they pay for should be deducted as an operating expense for them.
Bucky 
I HAVE SLAYED THE DRAGON.....CURED SVR24!

Offline Marc718

  • Newbie
  • Posts: 1
Re: Harvoni Appeal
« Reply #142 on: November 30, 2014, 03:06:19 pm »
I am 68 and on Medicare.  Tried interferon in the nineties and almost lost my job.  Tried interferon and ribivarin after retiring in 2006 and suffered severe depression, my wife had an incredibly hard time dealing with me.

Now these new drugs are here.  Medicare approves both Solvaldi and Olysio.  My medicare drug plan has both on their formulary.  I have 1A, diagnosed back in early 70's as non-specific Hep, 5 years ago I was F2.  What is difference between using S & O (if my doc prescribes) and Harvoni (which is not on covered drug list and hasn't been approved by Medicare and probably will be turned down by my part D incurance carrier).  Are cure rates the same?  I am retired and income varies with the market so not sure if I make the 100K cut off.  Taking 100K out of my retirement savings for treatment would be a severe blow as we also informally help out children and grand children.

Thank you,

- Marc

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Harvoni Appeal
« Reply #143 on: December 02, 2014, 01:52:28 am »
Kathleen,

That's the spirit!! We have to be our own advocates and believe that we can fight the system and rely on each other for a shoulder, great advice and sometimes even a light smack to get us up and moving again. This is a tough battle and we have stumbled into a group of intelligent, caring, educated and special people; if I don't beat the battle this time I will the next time with the next medication. I will win this fight and I will get my life back and guess what, so will you!!

I wish we could change your forum name to SicknTiredNoMore!!!

You will be ok and I will be ok and we will make it through and even better we will have the opportunity to stay here and encourage others through their journey.

To all the moderators and my fellow members; you are all Heroes and Superstars in my book!! Maybe someday soon we will all be healthy and ready to lose our anonymity and come together for hugs in person!

~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 SickTired1

  • Member
  • Posts: 23
Re: Harvoni Appeal
« Reply #144 on: December 02, 2014, 11:55:16 am »
Thank you, Mel Battle!  I do have another name I use sometimes that is a lot more fun, and that is Rock Ranger (long story), but for now I'll keep SickTired1 because I am going to use my "Hep C" time today to get on hold with the insurance company.

Marc - the cure rates for SO and Harvoni are not the same, but with F2 your insurance will be more likely to approve SO since it is on their formulary already, and the Liver Doctor Society (AALSD or something like that) has issued a protocol the insurance companies will supposedly follow, for Harvoni.  It says "treat the sickest first" because there are not enough dollars to go around (they say) to pay for treatment for everyone all at once.  In this case, F2 isn't "sick enough" to be first in line.  I know that sounds crazy.  So if I were you and eligible for SO, I would probably try it. (I'm not you but I'm not eligible for SO either because I already had a protease inhibitor which did not work).  Just know you won't have to take the dreaded interferon either way.  DO NOT RAID YOUR RETIREMENT FUNDS!  Kathleen SickTired
Geno 1A, Il28bTT
Female, age 64
Inf late 60's/early 70's
Dx October 2012
F4, Childs Pugh A
Triple therapy June 2013-May2014 (pegint/riba/telaprevir) Relapsed June 2014
Harvoni/Riba 1200 mg day started Jan 2015

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,544
  • Get tested, get treated, get cured, fight Hep c!
Re: Harvoni Appeal
« Reply #145 on: December 03, 2014, 03:55:25 am »
I think you are thinking of the American Association for the Study of Liver Diseases (AASLD)

http://www.hcvguidelines.org/fullreport

For anyone who hasnt seen this yet the current revision is dated October 8, 2014. I believe they are planning on a new edition to be completed in December with update now that Harvono has been approved.

Best to all
Lynn
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline SickTired1

  • Member
  • Posts: 23
Re: Harvoni Appeal
« Reply #146 on: December 03, 2014, 12:37:45 pm »
Thanks,Lynn - got my letters reversed.  Full report very interesting. That said, I am sure I saw somewhere a one page doc from them outlining their recs for Harvoni. I could be confusing it with the formulary page some insurers are using...  anyway, the basic point is that they are recommending F3 and F4 livers for priority tx.  Don't know what they're going to do about the diers.... a little gallows humor.
Geno 1A, Il28bTT
Female, age 64
Inf late 60's/early 70's
Dx October 2012
F4, Childs Pugh A
Triple therapy June 2013-May2014 (pegint/riba/telaprevir) Relapsed June 2014
Harvoni/Riba 1200 mg day started Jan 2015

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,544
  • Get tested, get treated, get cured, fight Hep c!
Re: Harvoni Appeal
« Reply #147 on: December 03, 2014, 02:58:57 pm »
Yes the AASLD did also have recommendations who should get meds first butter did not mean no one else should get them they even published another letter claifying what they were dying to say but the insurance companies hat already taken the idea and ran with it. It was not the intent of the AASLD that F1 F2 people should be denied treatment waiting to become sick enough with cirrhosis and thus also harder to treat just that the sickest get to the front of the line

Lynn
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Tess1971

  • Member
  • Posts: 198
  • G2b, 12wk Sov/Riba, End 11/15/14 UD, SVR-5,14 & 32-UD
Re: Harvoni Appeal
« Reply #148 on: December 03, 2014, 04:40:27 pm »
I don't know if anyone here has BCBS, but, I got a look at their approved drugs for 2015 and Harvoni is on it for treatment of hep c.  Caremark is their supplier.

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,544
  • Get tested, get treated, get cured, fight Hep c!
Re: Harvoni Appeal
« Reply #149 on: December 03, 2014, 08:07:35 pm »
I have BCBS of Illinois through my job but for them prescription drug coverage is Express Scripts and Accredo speciality pharmacy for the Harvoni
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline SickTired1

  • Member
  • Posts: 23
Re: Harvoni Appeal
« Reply #150 on: December 03, 2014, 11:05:26 pm »
Thanks, Lynn.  I do understand what they were trying to do and I know they are on our side. That said, I remember saying "Oh, good! I'm sick enough to get the drug right away."  Which did not actually turn out to be the case because my insurance has excluded it from the plan.  I believe this will be temporary at least.  If not, I'll be at the end of the line and it will be the end of the "real line" if you get my drift.  More gallows humor.

Anyway, it is good to have this knowledge.  Thanks for passing it along.

 
Geno 1A, Il28bTT
Female, age 64
Inf late 60's/early 70's
Dx October 2012
F4, Childs Pugh A
Triple therapy June 2013-May2014 (pegint/riba/telaprevir) Relapsed June 2014
Harvoni/Riba 1200 mg day started Jan 2015

 


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