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Author Topic: Treatment options?? Generic options????  (Read 6366 times)

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Offline Lauren1026

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  • Posts: 16
Treatment options?? Generic options????
« on: February 27, 2017, 02:06:06 pm »
Hello again everyone! So I finally got my results from my gastroenteroligist. I am type 1a and and F0. Good news liver is in good shape. But the Dr is not even submitting it to my insurance because in maryland you need to be an F2 or higher to get treatment. I obviously don't just want to wait around to become more advanced in this disease to be cured! I am 32 with a 11 month old only child and desperately want more kids without putting them at risk for hep c. Upon researching it seemed like there were ways to get it through my support path if household income is under 100,000 but I can't seem to find that anymore. Since my doctor didn't even submit it to my insurance I don't even have the option to appeal it which it seems some people had to keep doing Appeals to eventually get approved. I fully understand that this is very slow going and it could take me a very long time to even reach an F2 F3 like it has taken some people. I have also read about different ways to get generic medication and I was wondering if any of you can offer me Insight on that. I have seen that there are Buyers Clubs like the fix hep C and I have also come across the man named Greg Jefferys. Has anybody been familiar with either of these ways to obtain generics? Or gone through Greg? Everything I have read about him seems absolutely amazing and almost too good to be true!!! but if it is true he seems like an angel Sent From Heaven who has dedicated his whole life to helping people get affordable medication. Any advice would be much appreciated thank you all so much for taking the time to read this!!!!
January 2017 found out I am positive
Feb 15th 2017 genotype 1a VL850000 F0
MARCH 20th entered in a study 50/50 chance of getting  either harvoni or zepatier for treatment
May 1st begin treatment of zepatier VL450000

Offline elias

  • Member
  • Posts: 285
Re: Treatment options?? Generic options????
« Reply #1 on: February 27, 2017, 05:11:40 pm »
Hi Lauren:

When it seemed my insurance was going to deny me Epclusa, I  did contact Greg Jefferys via email with regard to generics. He replied instantly. I feel we did connect. I'd say even on some profound level. My impression of him is same as yours. My appeal was successful. But I'd have likely gone that route via Jefferys had it not been. Hes is certainly one of the heroes of HCV advocacy

Best wishes on this:

~elias
« Last Edit: February 27, 2017, 05:14:02 pm by elias »
Contracted HCV ~age 12
Diagnosed: September 2016 GT2b
F3 by Fibrosure: 0.66
Necroinflammat activity: A3 0.76
================
VL Sep. 12, 2016: 1.44 million/ Log: 6.157
AST:71/ ALT:114   Sept. 1, 2016 Before treatment
==================
4 week after beginning  Epclusa:
Viral Load: UNDETECTED
AST 17/ALT 11
===============
Began Epclusa:  October 22, 2016
End of Treatment [EOT]: January 13. 2017
====================
EOT+4 Weeks: UNDETECTED
====================
SVR 12 April14-HCV Not Detected

Offline Lynn K

  • Global Moderator
  • Member
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  • Get tested, get treated, get cured, fight Hep c!
Re: Treatment options?? Generic options????
« Reply #2 on: February 27, 2017, 05:17:55 pm »
Yes unfortunately Giliead discontinued providing meds believing that insurance should be made to do their job.

I might try to find another doctor willing to fight for you. I am thinking your doctor  any not want the hassle. Being a woman of child bearing age who wants more children is also a reason to treat you and a valid argument for appeal. But you must first be prescribed to appeal.

You could google patient assistance network (PAN) they can also help people get treatment. Yes several here have gone through Greg Jefferys as well with success.

Personally I dont get your doctor not wanting to prescribe because they expect you to be denied. There have been lots of people who were treated at F0

I would ask him to submit a prescription for you, or if he won't, to give you a referral to another doctor who will.

Good luck
Lynn
« Last Edit: February 27, 2017, 05:20:02 pm by Lynn K »
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 Gaj

  • Member
  • Posts: 172
  • Optimist
Re: Treatment options?? Generic options????
« Reply #3 on: February 27, 2017, 07:27:27 pm »
Hi Lauren,

I need to declare here that I act in a voluntary capacity as a global moderator on the FixHepC forums.

Lynn provides good advice, as she says you should exhaust all your available avenues to get the treatment via your insurance which you have paid for. This includes getting a supportive doctor to submit an application using whichever criteria matches your situation, seeking advice from a PAN advocate and appealing your insurance if initially rejected.

If these avenues are unsuccessful then both Greg Jefferys and FixHepC are reliable, trusted sources of generic HCV medications. While they are seperate operations they do cooperate regularly to assist patients with HCV. As a team, Dr James Freeman and Greg presented a paper reporting generics as providing equivalent results to brand name medications at the International Liver Congress last April. To provide more confidence here are a couple of the numerous media reports about it along with a link to one of the registered clinical trials conducted by FixHepC.

http://www.healio.com/hepatology/hepatitis-c/news/online/%7Bed4f581f-284c-4355-a56d-b973525169d3%7D/study-shows-generics-pose-safe-economic-option-for-patients-with-hcv

http://www.medscape.com/viewarticle/862085

https://clinicaltrials.gov/ct2/show/NCT02657694

Wishing you well for a successful and early treatment.




« Last Edit: February 27, 2017, 07:38:07 pm by Gaj »
Male - 61 years
Genotype 3a (since 1978?)
Diagnosed 2012
Treated 2013 PEG/Riba/Dac (Relapsed)
F4 - HCC#1 Resected 06/15 - #2 RFAblated 11/15
11/18/15 Commenced Generic Tx - Sof/Dac/Riba (24wks)
Pre Tx = ALT: 270  AST: 209  ALB: 31
05/05/16 = ALT: 34  AST: 32  ALB: 40  VL: Undetected (EOT)
06/16/16 = Relapsed
06/23/16 = ALT: 92  AST: 59  ALB: 40  VL: 290,770
01/12/17 3rd Tx - Zepatier + Sofosbuvir (16wks)
05/03/17 EOT und
06/22/17 SVR7 und
07/27/17 SVR12 UND!
10/26/17 SVR24 UND & Cured!!!

Offline Lauren1026

  • Member
  • Posts: 16
Re: Treatment options?? Generic options????
« Reply #4 on: February 28, 2017, 07:53:41 pm »
Thank you everyone for taking the time to read my rambling thoughts and take time to reply! Unfortunately the doctor's office simply refuses to take 5 minutes to send in the paperwork saying it's a waste of time vecause I will be denied. I even asked for the doc to call me stating that's not at all what he said during the appt and they said they would relay my thoughts. Really people?! I spoke directly with my insurance provider and my speciality pharmacy today who both said harvoni is covered... and yes in md the guidelines for approval are f2 and higher.... yet both said my paperwork should be put in regardless! The lady from the actual insurance provider flat-out said these are guidelines but it does not 100% mean I will get denied. She even offered to call the doctor's office for me! At that point after being on the phone all day long and with how rude the doctor's office was to me I actually declined. She also told me to definitely get a second opinion. So today while my baby was napping I researched the best doctors around me and came across Mark sulkowski who was in Baltimore and apparently that's his specialty is basically helping people with hep C. Instead of trying to argue with my pathetic doctor that I waited a month to see I'm going to try to get to him for a second opinion I'm awaiting a referral now from my primary care. When I called to inquire about an appointment with him get this they told me they have one on Monday! How crazy is that I won't have to wait as long as I did for the first guy. So at this point I'm very relieved that at least my second opinion seems to be a more trustworthy and knowledgeable doctor. And even if he tells me the exact same thing at least I can be at peace with that coming from him and not these office staff people that wouldn't even have the doctor call me back. Very frustrating but I'm so glad to have come across this forum because everybody here is so helpful and all the information on here is very interesting and informative!!!! This chick is not going down without a fight! I am going to do everything in my power to get rid of this virus and be free and carry on with my life and have more babies which is all I'm want for myself more than anything in this world. And once I have exhausted all efforts if I have to buy generic harvoni from India so be it!!! Again thank you all for taking the time to read my post and taking time out of your days to reply I really appreciate it every single person on here has given me hope
January 2017 found out I am positive
Feb 15th 2017 genotype 1a VL850000 F0
MARCH 20th entered in a study 50/50 chance of getting  either harvoni or zepatier for treatment
May 1st begin treatment of zepatier VL450000

Offline elias

  • Member
  • Posts: 285
Re: Treatment options?? Generic options????
« Reply #5 on: February 28, 2017, 10:10:45 pm »
Quote
So today while my baby was napping I researched the best doctors around me and came across Mark sulkowski who was in Baltimore and apparently that's his specialty is basically helping people with hep C. Instead of trying to argue with my pathetic doctor that I waited a month to see I'm going to try to get to him for a second opinion I'm awaiting a referral now from my primary care.

Dr. Sulkowsky is a top notch researcher in this field and he co-authored quite a number of key medical journal articles on clearing HCV. What luck you were able to get appt. with him so soon! He might  be able to provide guidance on this insurance issue...

 I would appeal any insurance company decision telling you you need to wait until you're really sick to get approval. Especially since you have a good medical reason for wanting to clear the virus now.
« Last Edit: February 28, 2017, 10:17:17 pm by elias »
Contracted HCV ~age 12
Diagnosed: September 2016 GT2b
F3 by Fibrosure: 0.66
Necroinflammat activity: A3 0.76
================
VL Sep. 12, 2016: 1.44 million/ Log: 6.157
AST:71/ ALT:114   Sept. 1, 2016 Before treatment
==================
4 week after beginning  Epclusa:
Viral Load: UNDETECTED
AST 17/ALT 11
===============
Began Epclusa:  October 22, 2016
End of Treatment [EOT]: January 13. 2017
====================
EOT+4 Weeks: UNDETECTED
====================
SVR 12 April14-HCV Not Detected

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,461
  • Get tested, get treated, get cured, fight Hep c!
Re: Treatment options?? Generic options????
« Reply #6 on: March 01, 2017, 12:22:03 am »
Go get em tiger

They're going to hear you roar!
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 Philadelphia

  • Global Moderator
  • Member
  • Posts: 1,157
  • It only looks like I know what I'm doing
Re: Treatment options?? Generic options????
« Reply #7 on: March 02, 2017, 03:36:19 pm »
Being proactive is good for your health ;)
CURED SVR24  Class of 2015
Wk 12 post EOT 30.11.15: ALT 14 AST 22 GGT 22 VL UND
Week 19 07.08.15: ALT 17 AST 23 GGT 25
Week 12 18.06.15: ALT 21 AST 23 GGT 28
Week 8 25.05.15: ALT 23 AST 27 GGT 30 VL UND
Week 4 20.04.14: ALT 30 AST 36 VL 40
Treatment start 23.03.15: ALT 137 AST 185 VL 342,600
Cirrhosis Child-Pugh A, Genotype 1a - Viekira Pak + riba 24 weeks
Total failure interferon/ribavirin/boceprovir Mar 2013
https://www.hepmag.com/blogger/grace-campbell

Offline Lauren1026

  • Member
  • Posts: 16
Re: Treatment options?? Generic options????
« Reply #8 on: March 22, 2017, 03:19:38 pm »
Update... Dr sulkowski is amazing! He thinks one way or another I will have treatment within a few months. Thank God I feel like a weight has been lifted off of me. He immediately entered me in a study that he said is like a coin toss. 50/50 between zepatier and harvoni. If I get zepatier no problem I will have the pills in a month or less, but if I get chosen for harvoni we will have to fight with my insurance. But to my relief he said even that route would only be 3 or 4 months approximately. He said zepatier is just as effective but I may have to also take ribavarin which would mean 9 pills a day. Anyone else had this for treatment? At this point I would take 25 pills a day if it meant a cure in the long run! I am so thankful I found this doctor who him and his staff seem to go the extra mile to get people the cure they need regardless of liver damage.
January 2017 found out I am positive
Feb 15th 2017 genotype 1a VL850000 F0
MARCH 20th entered in a study 50/50 chance of getting  either harvoni or zepatier for treatment
May 1st begin treatment of zepatier VL450000

Offline Lynn K

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  • Member
  • Posts: 4,461
  • Get tested, get treated, get cured, fight Hep c!
Re: Treatment options?? Generic options????
« Reply #9 on: March 23, 2017, 01:32:46 am »
Haven't had that treatment but I have taken ribavirin on 3 seperate treatments. I get very anemic when taking ribavirin and feel very run down. Anemia is a not uncommon side effect of ribavirin. Also some people experience what they call riba rash and also others have some anger issues on treatment which some call riba rage. But the rash and the anger issues are less common. Some people have less trouble than others all I experienced was anemia.

Not to discourage you just so you are prepared. I took a lot of riba in my day and would do it again if i had to.

That was why on my last successful treatment I asked my doctor if she thought it would be a good idea to add riba to my 24 weeks of Harvoni to finally cure my hep c.

Good luck
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 dragonslayer

  • Member
  • Posts: 873
Re: Treatment options?? Generic options????
« Reply #10 on: March 23, 2017, 08:20:29 am »
Lauren, isnt it unusual for study participants to have to pay for their study meds?
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

Offline Lauren1026

  • Member
  • Posts: 16
Re: Treatment options?? Generic options????
« Reply #11 on: March 27, 2017, 09:02:35 pm »
Dragonslayer,
Through this study I will not pay for anything thankfully! :) Before finding this doctor I wasn't sure if I would be able to obtain treatment because of me being an F0 and not having any signs of liver damage.... so earlier posts I was inquiring about purchasing generic drugs kinda as a back up plan if you will. The Dr I went to for my second opinion seems confident I will get treatment one way or another... hopefully with the zepitar because that will happen the quickest without a fight with my insurance. Still waiting on news! Fingers crossed!!!
January 2017 found out I am positive
Feb 15th 2017 genotype 1a VL850000 F0
MARCH 20th entered in a study 50/50 chance of getting  either harvoni or zepatier for treatment
May 1st begin treatment of zepatier VL450000

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,461
  • Get tested, get treated, get cured, fight Hep c!
Re: Treatment options?? Generic options????
« Reply #12 on: March 27, 2017, 09:24:23 pm »
Just wondering about the fight with your insurance comment why would you need insurance if it is a study?
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 Lauren1026

  • Member
  • Posts: 16
Re: Treatment options?? Generic options????
« Reply #13 on: March 28, 2017, 11:35:35 pm »
Lynn,
Not sure exactly! Lol. It was alot to take in at the appointment honestly. I thought the way he explained it was if I get chosen for zepitar in this "coin toss" study i get it free I believe through the manufacturer? If it picks harvoni for some reason it must go through my insurance which will get denied (being an f0 on medicaid in maryland) and he will then appeal it. Why harvoni goes through my insurance but the zepitar doesnt is a gray area... but from what i understood was because it came from the maker directly in this particular study. But I was told last Monday I would wait 4 to 5 weeks for an answer. Today I received a call from Dr Sulkowski himself saying the "toss" went in my favor and it chose zepitar for me!!! I am beyond happy and so thankful that I am able to receive treatment. My blood work checked out and I don't have to take the riba with it thankfully. And of all days I got this great news on my son's first birthday! I've had goosebumps all day. I found out I was positive about 3 months ago.... waited a month for the first doc to do nothing.... and here I am a week after my second opinion with an end in sight! I am so excited.  And to my surprise I should be able to pick up my first month's treatment within a few days. Thank God! Whooooohooooo!!!!!!
January 2017 found out I am positive
Feb 15th 2017 genotype 1a VL850000 F0
MARCH 20th entered in a study 50/50 chance of getting  either harvoni or zepatier for treatment
May 1st begin treatment of zepatier VL450000

Offline Lauren1026

  • Member
  • Posts: 16
Re: Treatment options?? Generic options????
« Reply #14 on: March 28, 2017, 11:42:46 pm »
Totally random question for anyone else reading this thread.... was going over my February blood work today and my platelets were high.. like 600s? And Google is not my friend on this one and quite frankly was scaring me! Anyone have any thoughts on this? I actually went to my primary doc today bc I've been battling a cold for over a week and mentioned it to him. He repeated blood work but didn't go into detail too much. Probably because since my hep C diagnosis I have been somewhat of a spaz...
January 2017 found out I am positive
Feb 15th 2017 genotype 1a VL850000 F0
MARCH 20th entered in a study 50/50 chance of getting  either harvoni or zepatier for treatment
May 1st begin treatment of zepatier VL450000

Offline Lynn K

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  • Posts: 4,461
  • Get tested, get treated, get cured, fight Hep c!
Re: Treatment options?? Generic options????
« Reply #15 on: March 31, 2017, 01:16:50 am »
You should get the high platelet question answered by your doctor but did find this

http://www.mayoclinic.org/diseases-conditions/thrombocytosis/basics/causes/con-20032674

Thrombocytosis is high platelet count

I am guessing either you would be treated by a clinical trial with the Zepatier and in a clinical trial the trial provides the medications.

If you are not being treated in a trial then that would be by normal channels getting a prescription through your insurance. Also a lot of people are able to get Harvoni through their insurance with no liver damage.
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!

 


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