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Author Topic: Recently diagnosed with HCV and looking for advice  (Read 24846 times)

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Offline MaryC

  • Member
  • Posts: 117
  • Life is not a sprint; it's a marathon.
Recently diagnosed with HCV and looking for advice
« on: September 03, 2015, 08:18:01 pm »
I must start off with an apology as this posting is lengthy.  I am looking for advice, and any recommendations for medication assistance.

I am an active 59 year old female who was diagnosed with HCV during a routine physical in April 2015.  After handing me an information sheet on HCV from the CDC, my PCP sent me for the screen as my LFT's were slightly elevated.  I had scheduled the physical at the advice of my PCP's office as I had been experiencing increasing fatigue and muscle/joint aches for the last few years.  My PCP subsequently sent me to a Hepatologist. 

Several tests were subsequently ordered with the following results:
-Abdominal CT scan:  normal findings
-Vial load:  537,000
-Genotype 3a
-AST 32
-ALT 41
-Fibrosis score:  0.46 (F1-F2)

I am a RN and have worked in clinical settings with direct patient contact, contact with blood and body fluids, but have always been very careful and used universal precautions.  I have no known needle sticks, no history of IV drug use and don't even have a tattoo.  I did have a blood transfusion in 1994 during surgery – according to the CDC, effective screening of blood products in this country has been in place since 1992.  I am at a loss as to when, where and how I contracted this virus. 

My Hepatologist would like to treat me with a combo of Solvaldi and Daklinza (recently approved by FDA for Genotype 3).  He would like to avoid peginterferon treatment if at all possible for various (and I believe valid) reasons. 

I understand from my research that Genotype 3 is only found in about 10% of the population in this country, and is considered more challenging to treat and more aggressive in its course.  Also that it is associated with a higher risk of developing liver cancer and lymphoma.  I am very eager to treat this virus, but have already experienced my first denial for treatment from my insurance carrier.  My insurance carrier would only consider treatment if my fibrosis stage is 2 (F2 = 0.48) and then would only be willing to authorize the following drug combo:  Peginterferon, Ribavirin and Solvaldi for 12 weeks.

I feel I am being asked to sit and wait to while my health deteriorates.  Because I am not sure when I or how I contracted this virus, I am not sure how rapidly it has progressed at this point. 

I have checked current clinical trials and do not see any I would meet criteria for which are actively recruiting. 

A final and personal note...I have generally been a healthy individual.  I am  extremely active – a runner (marathoner), a hiker, and fitness-oriented individual. 

Any insights, suggestions or experiences from others would be greatly appreciated – specifically information which might help increase my chances advocating for the specialty drug approval to treat my HCV.  Also...I am very curious to hear from others who have Genotype 3 and how quickly this has progressed. 
Thank you!
GT 3a
Dx'd 4/15 not known when contracted
Labs 7/15:
-VL 537,000
-AST 32
-ALT 41
-Fibrosis score 0.46 (F1-F2)
Started tx 9/17/2015 with Daklinza + Sovaldi
6/6/16: 24 week EOT SVR!  Cured!

Offline KimInTheForest

  • Member
  • Posts: 1,972
  • Believe in yourself
Re: Recently diagnosed with HCV and looking for advice
« Reply #1 on: September 03, 2015, 08:38:44 pm »
Hi Mary. And welcome to the forums! I too am/was Genotype 3a. And I contracted it 40-45 years ago. So it has been in my body a very long time, but done no permanent damage as far as I can tell. Yes, the current thinking is that Genotype 3 progresses faster in terms of liver damage and may put one at higher risk for liver cancer. But personally I wouldn't worry about that too much. HCV is a pretty slow mover no matter what your genotype. And if you are just F1-F2, you don't have much to worry about.

I was treated this summer with a 12-week clinical trial of Harvoni+Ribavirin. Won't have the final word on that til late October. But I was undetected 4 weeks post-treatment. So that is a very good sign. :)

Yes, Sovaldi+Daklinza would be great for you.

As for insurance company denial - I am not the expert on that. Others here know much more, and I hope they will chime in. But many people are initially denied by their insurance company. They appeal (often with letter from doctor making a persuasive case), are denied again. And they can at that stage request an independent review, which often results in the insurance company being forced to cover your drugs as prescribed by your doctor.

Some people have engaged lawyers. Some have gone directly to Gilead and used their Patient Assistance Program Support Path (although apparently that is no longer open to people whose insurance company turns them down, just people with no insurance).

An increasing number of people are buying generic Sovaldi from India - just $1,000 for a 3-month supply as opposed to $84,000 in US. I believe there may also be a generic Daklinza, perhaps from China? And in any case, as geno 3, you could always do 24 weeks of generic Sovaldi from India + ribavirin. The cure rate is the same. But really, if you have any way to avoid the ribavirin and do 12 weeks of Sovaldi+Daklinza, that would be preferable. There is also supposed to be a generic Harvoni available from India by December of this year or early in 2016. 12 weeks of Harvoni+ribavirin would almost certainly cure you. (100% cure rate in New Zealand study for genotype 3's.)

The point is, it often takes a fight (sometimes a big fight) to get the life-saving medication you are entitled to. But nearly everyone who wages that fight does end up getting the treatment they need and deserve. I too was told the new all-oral treatments would not be covered for me unless I first tried Interferon (which I have refused for 20 years). And then a seat came up in a clinical trial, so I got my drugs that way.

Best of luck, and do keep us posted on your progress!
kim :)

« Last Edit: September 03, 2015, 09:02:40 pm by KimInTheForest »
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Recently diagnosed with HCV and looking for advice
« Reply #2 on: September 03, 2015, 08:59:49 pm »
Welcome, Mary. I'm impressed with your thorough research!

I see that Kim has responded while I was typing. These three tidbits of info may still be useful to you:
1) Different tests for fibrosis can get different results. For example, FibroScan put me at F4, whereas FibroSure put me at F2; others on this forum have had the opposite result with those same two tests. Maybe some other test would put you at F2 so your insurer would be willing to treat you.
2) However, that still wouldn't get you coverage for Daklinza, unless your insurer hasn't made it an option yet because it is so new. More likely, it's the fact that it costs so much more. As for manufacturers of Hep C drugs (e.g., Gilead for Sovaldi and Harvoni) making deals with foreign countries such as India to produce the drugs much more cheaply, a Wall Street Journal blog post indicated Bristol-Myers may be doing something similar for Daklinza: http://blogs.wsj.com/pharmalot/2014/11/03/bristol-myers-plan-to-widen-access-to-its-hep-c-drug-but-meets-criticism/
3) My hepatologist and his assistant told me to expect to receive at least two denials, as that was typical in their experience. Kim has already indicated lots of people have had difficulties getting approved; other threads in these forums detail what various people did en route to getting their meds.

Best wishes,

Gnatty
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline Rosie13

  • Member
  • Posts: 297
Re: Recently diagnosed with HCV and looking for advice
« Reply #3 on: September 03, 2015, 09:30:21 pm »
I must start off with an apology as this posting is lengthy.  I am looking for advice, and any recommendations for medication assistance.

I am an active 59 year old female who was diagnosed with HCV during a routine physical in April 2015.  After handing me an information sheet on HCV from the CDC, my PCP sent me for the screen as my LFT's were slightly elevated.  I had scheduled the physical at the advice of my PCP's office as I had been experiencing increasing fatigue and muscle/joint aches for the last few years.  My PCP subsequently sent me to a Hepatologist. 

Several tests were subsequently ordered with the following results:
-Abdominal CT scan:  normal findings
-Vial load:  537,000
-Genotype 3a
-AST 32
-ALT 41
-Fibrosis score:  0.46 (F1-F2)

I am a RN and have worked in clinical settings with direct patient contact, contact with blood and body fluids, but have always been very careful and used universal precautions.  I have no known needle sticks, no history of IV drug use and don't even have a tattoo.  I did have a blood transfusion in 1994 during surgery – according to the CDC, effective screening of blood products in this country has been in place since 1992.  I am at a loss as to when, where and how I contracted this virus. 

My Hepatologist would like to treat me with a combo of Solvaldi and Daklinza (recently approved by FDA for Genotype 3).  He would like to avoid peginterferon treatment if at all possible for various (and I believe valid) reasons. 

I understand from my research that Genotype 3 is only found in about 10% of the population in this country, and is considered more challenging to treat and more aggressive in its course.  Also that it is associated with a higher risk of developing liver cancer and lymphoma.  I am very eager to treat this virus, but have already experienced my first denial for treatment from my insurance carrier.  My insurance carrier would only consider treatment if my fibrosis stage is 2 (F2 = 0.48) and then would only be willing to authorize the following drug combo:  Peginterferon, Ribavirin and Solvaldi for 12 weeks.

I feel I am being asked to sit and wait to while my health deteriorates.  Because I am not sure when I or how I contracted this virus, I am not sure how rapidly it has progressed at this point. 

I have checked current clinical trials and do not see any I would meet criteria for which are actively recruiting. 

A final and personal note...I have generally been a healthy individual.  I am  extremely active – a runner (marathoner), a hiker, and fitness-oriented individual. 

Any insights, suggestions or experiences from others would be greatly appreciated – specifically information which might help increase my chances advocating for the specialty drug approval to treat my HCV.  Also...I am very curious to hear from others who have Genotype 3 and how quickly this has progressed. 
Thank you!
Labs August 15,2015
Genotype 1b
AST 112 U/L
ALT 181 U/L
HCV 192,000 IU/mL
Fibroscan F2-3
Started Harvoni Sept. 5, 2015
4wk. labs Oct. 2,2015
AST 21 U/L
ALT 27 U/L
HCV UNDETECTED!!
8wk. labs Nov.5,2015
AST 16 U/L
ALT 19 U/L
HCV UNDETECTED!!
12 wks.post tx.feb.11,2016
UNDETECTED!!!
24 wks. post tx. may 16,2016
UNDETECTED Fibroscan  F-0!!!!!

Offline Rosie13

  • Member
  • Posts: 297
Re: Recently diagnosed with HCV and looking for advice
« Reply #4 on: September 03, 2015, 10:01:55 pm »
Hi Mary! As you can see I am new too & still mess up posting ......I just got approved for Harvoni treatment today! It was a grueling experience to be denied then approved for treatment it 0% pharmacy benefit...I just kept moving forward & have a few ideas for you.Gnatty's suggestion to get a fibroscan again is a great idea.The hematology nurse that did my test spent time looking for areas that would help my case.My viral load had decreased to 192,000 from 500,000 but my scan was f2\3. My alt & ast #'s sky high...There are different programs @Gilead .I did not qualify for My Support Path but the one that helped me is called Genetech 877-505-6986. I also contacted Patient Access Network 866-316-7263 & Patient Advocate Foundation 800-532-5274...these 3 awesome groups covered me for 8 wks completely.At the last minute Florida Blue insurance decided to pay by using my major medical coverage instead of pharmacy.I wish you the best of luck & will send info as I go through the process.Tomorrow will be day 1 for me I still feel blessed to have come through this horrible process a better person ready to pay it forward .The people on this forum are the best !
Labs August 15,2015
Genotype 1b
AST 112 U/L
ALT 181 U/L
HCV 192,000 IU/mL
Fibroscan F2-3
Started Harvoni Sept. 5, 2015
4wk. labs Oct. 2,2015
AST 21 U/L
ALT 27 U/L
HCV UNDETECTED!!
8wk. labs Nov.5,2015
AST 16 U/L
ALT 19 U/L
HCV UNDETECTED!!
12 wks.post tx.feb.11,2016
UNDETECTED!!!
24 wks. post tx. may 16,2016
UNDETECTED Fibroscan  F-0!!!!!

Offline MaryC

  • Member
  • Posts: 117
  • Life is not a sprint; it's a marathon.
Re: Recently diagnosed with HCV and looking for advice
« Reply #5 on: September 04, 2015, 08:01:49 am »
Kim, Gnatty and Rosie,
Thanks so much for your responses.  It feels encouraging to know others are able to access treatment. Very helpful resource information also.

Interesting to hear about the difference in fibrosis test scores.  I had the Fibrosure (blood test - no biopsy).

I have requested an appeal through my insurance and plan to request an external appeal if the specialty drug request denial is upheld.  I am also considering investigating out of the country access for the medication (India for Solvaldi and China for Daklinza), but would need to explore how to go about getting a Hepatologist who would both order the medications and monitor. 

Kim...I will be keeping my fingers crossed that you will have good news in October.
Rosie...great news for you!  I wish you the best as you start your med regimen with Harvoni.

Thank you so much,
Mary
GT 3a
Dx'd 4/15 not known when contracted
Labs 7/15:
-VL 537,000
-AST 32
-ALT 41
-Fibrosis score 0.46 (F1-F2)
Started tx 9/17/2015 with Daklinza + Sovaldi
6/6/16: 24 week EOT SVR!  Cured!

Offline Sookiesue2

  • Member
  • Posts: 14
  • I got this!!
Re: Recently diagnosed with HCV and looking for advice
« Reply #6 on: September 04, 2015, 10:45:47 am »
Hi Mary,

Welcome to the forum, even though I'm a newbie too :) I also have genotype 3a, Val only 22,000, F1-f2 and I've had hep c for over 40 years. My doctor didn't think My insurance, United Healthcare would approve my Meds but they did on the first try, I'm very lucky it seems. 

I'm 62 years old and pretty active, walk my dogs 1 - 2 miles everyday and do yoga twice a week. I'm starting A 24 week treatment do Sovaldi/ribavarin next week when we get back from Labor Day camping.

I hope you get approved soon so we can go through this journey together. There not a lot of us GT 3a's out there!

Wishing you the best and keep us updated. I'll update my journey as well :)

teri

Teri
62 yr old
Gt 3a
Probably had since early 70's drug use
Dx 2003
VL 22,900
F1 F2
Started Sovaldi/Ribavarin 24 weeks on 9/10/15

Offline MaryC

  • Member
  • Posts: 117
  • Life is not a sprint; it's a marathon.
Re: Recently diagnosed with HCV and looking for advice
« Reply #7 on: September 04, 2015, 06:07:09 pm »
Hi Teri,
Glad to hear your insurance was able to see the wisdom of approving treatment for you.  I will be interested in following your journey.  Stay active...seems like this has been beneficial for your health so far.  40 years is a long time, so I guess the progression of this virus can be very slow if you have a healthy lifestyle. 

Re: GT 3a...my Hepatologist almost seemed surprised with this result for me.  He didn't really explain when I asked about it - maybe he just 'assumed' I would have a more common GT. 

Thank you for your response,
Mary
GT 3a
Dx'd 4/15 not known when contracted
Labs 7/15:
-VL 537,000
-AST 32
-ALT 41
-Fibrosis score 0.46 (F1-F2)
Started tx 9/17/2015 with Daklinza + Sovaldi
6/6/16: 24 week EOT SVR!  Cured!

Offline mrcat211

  • Member
  • Posts: 20
Re: Recently diagnosed with HCV and looking for advice
« Reply #8 on: September 09, 2015, 01:06:29 am »
MaryC
I can tell you that you should keep on the insurance company. Not sure where you are located but you could also get a lawyer involved. I did this after two denials and once I had an attorney involved my insurance approved. Simultaneously I worked very hard on securing the meds from India for the cost of one pill here in the states. You can PM me for more info.
Also here is an article with related information
http://www.abc.net.au/news/2015-08-20/hepatitis-c-sufferer-imports-life-saving-drugs-from-india/6712990

I also had fibrosure blood test which resulted in F2-F3 but fibroscan came back at F4 cirrhosis.
This is not an easy road but it can be done and we can get treated.
2007 Detected post hospital surgery
HCV 1a
RA and Lupus
2016 CURED!!! Free of Hepatitis C- Cirrhosis still present
2015 Harvoni 90 days
2009 VL 1.4million
2009 AST 62
2009 ALT 38
2014 AST 99
2014 ALT 80
2015 AST 96
2015 ALT 81
2015 VL 2.3Million
A2- A3 Necroinflam score
8-2015 F4 cirrhosis GradeA
Portal Hypertension
8-2015 Gastric Varices

Offline MaryC

  • Member
  • Posts: 117
  • Life is not a sprint; it's a marathon.
Re: Recently diagnosed with HCV and looking for advice
« Reply #9 on: September 09, 2015, 09:53:31 pm »
Thank you for the encouragement mrcat211.  I plan to keep pushing through the appeals process and explore alternative options (including India) if needed.  I also applied to participate in a clinical trial though have not yet had a response.  I reside in the US. 

You mentioned your insurance finally approved treatment.  Have you started your treatment?  If so, great news!  I am so encouraged when I hear about others who have been successful in accessing treatment (specifically non-interferon treatment).  I have stopped saying, "if I ever get treatment" and now say, "when I am treated". 

Mary


GT 3a
Dx'd 4/15 not known when contracted
Labs 7/15:
-VL 537,000
-AST 32
-ALT 41
-Fibrosis score 0.46 (F1-F2)
Started tx 9/17/2015 with Daklinza + Sovaldi
6/6/16: 24 week EOT SVR!  Cured!

Offline Maxlaw

  • Member
  • Posts: 20
Re: Recently diagnosed with HCV and looking for advice
« Reply #10 on: September 10, 2015, 12:32:10 pm »
Hi Mary,

You have already received some good information here, but since you mentioned clinical trials, I thought I would chime in about that.  I, too, WAS genotype 3...but I was CURED in a clinical trial this year with AbbVie's next generation NS3/4A inhibitor (ABT-493) and next gen NS5A inhibitor (ABT-530) without ribavirin. These two drugs are the next generation of paritaprevir and ombitasvir, respectively, which are in Vikera Pak (recently approved for GT1). The new drugs are said to be pan-genotypic, and have particular high potency against GT3 and a high barrier to resistance.  In fact, these drugs were so successful (I was told off the record), that the trial (link below), which was originally for 12 weeks of varying dosages and only non-cirrhotic GT2's and GT3's has been expanded to include new cohorts for 8 weeks and for cirrhotics.  The trial still shows to be recruiting...here is the link:

https://clinicaltrials.gov/ct2/show/NCT02243293?term=abt-493+abt-530+genotype+3&rank=1

This is a phase 2 trial, and it is my understanding that the AbbVie's goal is to combine these two drugs into one daily dosage for phase 3, which should start next year.  I'm interested to see the results of this trial and whether or not ribavirin had an effect on the outcomes.  Luckily, I was randomized to the arm without ribavirin (I wasn't interested in taking ribavirin because of the side effects), and I will say that I had virtually no side effects from the ABT-493 and ABT-530 (I wasn't taking the lowest dosage amount nor the highest dosage amount)...only a slight headache the first few days.

I was also initially denied coverage by my insurance company because I didn't meet the criteria of being "sick enough"  because my fibrosis level was below F3 (based on liver biopsy it was F2).  I really didn't want to waste time trying to fight with the insurance company for treatment because of what I had read about the progression of GT3 and the fact that I was already at F2, so I requested my doctor to refer me to the research organization in a nearby city that conducts the trials.  Luckily for me, I was offered this trial within a couple of weeks, started in December of 2014, completed treatment on March 1, 2015, and just received my 24-week post treatment blood work results.  Not only was it a blessing to have been able to participate in this trial and be cured, it enabled me to learn a lot about this disease so that I can help others. 

Best of luck to you in getting treatment...keep fighting and advocate for yourself!  You WILL get treatment and you WILL be cured!!  There are also more new drugs in the pipeline other than the AbbVie drugs I mentioned that will be pan-genotypic and will be available within the next year or two, but I have a feeling you will be cured before then.

--Max
GT 3a, dx 07/2014, baseline VL <400K, Fibrosis stage F2 prior to treatment; Completed AbbVie trial drugs ABT-493 & ABT-530 03/01/2015; achieved SVR 12 on 5/27/15...CURED!!

Offline MaryC

  • Member
  • Posts: 117
  • Life is not a sprint; it's a marathon.
Re: Recently diagnosed with HCV and looking for advice
« Reply #11 on: September 10, 2015, 10:08:15 pm »
Thank you Max.  Congrats on your CURE!  Reason to celebrate for sure!  This IS the clinical trial I am trying to get into also.  You were referred by your Hepatologist?  Maybe my next step should be to reach out to my Hep to inquire whether he would be willing to assist with this. 

I know I am impatient in wanting to start treatment ASAP.  Mainly because I am now healthy and active and want to stay that way. 

The best to you in your HCV-free future!
Mary
GT 3a
Dx'd 4/15 not known when contracted
Labs 7/15:
-VL 537,000
-AST 32
-ALT 41
-Fibrosis score 0.46 (F1-F2)
Started tx 9/17/2015 with Daklinza + Sovaldi
6/6/16: 24 week EOT SVR!  Cured!

Offline Maxlaw

  • Member
  • Posts: 20
Re: Recently diagnosed with HCV and looking for advice
« Reply #12 on: September 11, 2015, 01:11:31 pm »
Yes, Mary, I was referred by my gastroenterologist, but I brought it up to him and told him I was interested in considering a clinical trial, and he was happy to refer me.  It happened very quickly for me and things just seemed to fall into place, so I knew it was the right decision for me.

--Max
GT 3a, dx 07/2014, baseline VL <400K, Fibrosis stage F2 prior to treatment; Completed AbbVie trial drugs ABT-493 & ABT-530 03/01/2015; achieved SVR 12 on 5/27/15...CURED!!

Offline KimInTheForest

  • Member
  • Posts: 1,972
  • Believe in yourself
Re: Recently diagnosed with HCV and looking for advice
« Reply #13 on: September 11, 2015, 02:41:07 pm »
Thank you Max.  Congrats on your CURE!  Reason to celebrate for sure!  This IS the clinical trial I am trying to get into also.  You were referred by your Hepatologist?  Maybe my next step should be to reach out to my Hep to inquire whether he would be willing to assist with this. 

I know I am impatient in wanting to start treatment ASAP.  Mainly because I am now healthy and active and want to stay that way. 

The best to you in your HCV-free future!
Mary

Hi Mary. I too was cured  from a clinical trial (assuming my SVR4 results persist until I reach SVR12 in October). In my case it was a Gilead trial of Harvoni+ribavirin for Geno 3's with no prior treatment experience. I consider trials a very good way to get your drugs if they are not readily available or covered as a prescription. Where I live in Canada, our government Pharmacare plan (which is normally quite good) would not cover me for any all-oral treatments unless I first tried Interferon, which I have refused to do for 20 years. So why start now when the cure we have been waiting for is finally here?

A nurse I was working with from the Infectious Diseases office of our local health unit asked me if I would like her to give my name to 3 clinics in this province that get clinical trials. I said yes. Three months later, I got a call from one of the clinics. And 3 months after that (in May) I started the trial. I think any medical professional who is connected to the HCV treatment community can put your name forward. If you Hepatologist will do it, go for that. Sometimes, nurses know more because they are talking and gathering with the other HCV nurses.

kim
« Last Edit: September 11, 2015, 02:43:20 pm by KimInTheForest »
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline MaryC

  • Member
  • Posts: 117
  • Life is not a sprint; it's a marathon.
Re: Recently diagnosed with HCV and looking for advice
« Reply #14 on: September 11, 2015, 09:46:14 pm »
Thank you for the helpful information Kim and Max. These clinical trials are valuable in many ways!

I had a some optimistic news today.  I called my insurance to check on the status of my appeal as I knew my Hepatologist was faxing new info 2 days ago.  I was told that there is a prior authorization on file for both the Daklinza + Sovaldi, and that I should be receiving my approval letter in the mail (it didn't come today).  I immediately called my Hepatologist and was told they have not yet received any notification of the denial being overturned as of yet.  I'm keeping my fingers crossed (and watching for my neighborhood mail carrier). 
GT 3a
Dx'd 4/15 not known when contracted
Labs 7/15:
-VL 537,000
-AST 32
-ALT 41
-Fibrosis score 0.46 (F1-F2)
Started tx 9/17/2015 with Daklinza + Sovaldi
6/6/16: 24 week EOT SVR!  Cured!

Offline KimInTheForest

  • Member
  • Posts: 1,972
  • Believe in yourself
Re: Recently diagnosed with HCV and looking for advice
« Reply #15 on: September 12, 2015, 11:25:41 pm »
Thank you for the helpful information Kim and Max. These clinical trials are valuable in many ways!

I had a some optimistic news today.  I called my insurance to check on the status of my appeal as I knew my Hepatologist was faxing new info 2 days ago.  I was told that there is a prior authorization on file for both the Daklinza + Sovaldi, and that I should be receiving my approval letter in the mail (it didn't come today).  I immediately called my Hepatologist and was told they have not yet received any notification of the denial being overturned as of yet.  I'm keeping my fingers crossed (and watching for my neighborhood mail carrier).

Fantastic, Mary! That sounds very promising :)

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline mrcat211

  • Member
  • Posts: 20
Re: Recently diagnosed with HCV and looking for advice
« Reply #16 on: September 14, 2015, 06:08:52 pm »
Mary C
That is all positive- I never did receive that approval letter. I called the ins back and they said they had faxed approval directly to the pharmacy. You might check with the pharmacy, otherwise I would call ins back as ask them to fax it asap. I was surprised even after getting through the overturned appeal process that nobody seemed to know, including myself or my dr. that I had finally been approved.
And then out of nowhere I had not one but TWO pharmacies ontacting me to arrange shipping and or pick up of my meds.......imagine that
2007 Detected post hospital surgery
HCV 1a
RA and Lupus
2016 CURED!!! Free of Hepatitis C- Cirrhosis still present
2015 Harvoni 90 days
2009 VL 1.4million
2009 AST 62
2009 ALT 38
2014 AST 99
2014 ALT 80
2015 AST 96
2015 ALT 81
2015 VL 2.3Million
A2- A3 Necroinflam score
8-2015 F4 cirrhosis GradeA
Portal Hypertension
8-2015 Gastric Varices

Offline MaryC

  • Member
  • Posts: 117
  • Life is not a sprint; it's a marathon.
Re: Recently diagnosed with HCV and looking for advice
« Reply #17 on: September 17, 2015, 10:03:10 pm »
My medication came, and I started the Solvaldi and Daklinza today!  I am feeling very optimistic and hopeful at the start of this journey! 

Thanks so much for the support!

Mary
GT 3a
Dx'd 4/15 not known when contracted
Labs 7/15:
-VL 537,000
-AST 32
-ALT 41
-Fibrosis score 0.46 (F1-F2)
Started tx 9/17/2015 with Daklinza + Sovaldi
6/6/16: 24 week EOT SVR!  Cured!

Offline byebyeC

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  • Posts: 286
Re: Recently diagnosed with HCV and looking for advice
« Reply #18 on: September 18, 2015, 12:16:11 am »
Congratulations Mary! Fantastic news!!! 8)
GT 1a
VL BOT 7 M
Diagnosed 1980
Treatment naive
12 wk Viekira Pak Riba Started 9/7/15
Alaska 
Pre-treatment labs were ast 42 alt 33 vl 7,162,(eyes are light yellow now)
*Latest alt 19 ast 23! Yay! VL <15 detected

Offline Bree

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  • Posts: 576
  • "Today is a good day for a great day!"
Re: Recently diagnosed with HCV and looking for advice
« Reply #19 on: September 18, 2015, 03:38:50 am »
That's really amazing Mary!  You were all over it and you got it... that's what it takes.  Wishing you the best on your journey!
Dx 1997 Geno 1a
2002-2003 PEG Intron/riba (48 wks) respond/relapsed
Pre-Harvoni - Viral Load: 13.5 M - Log 7.1
Fibrosure Score F1-2  Pre-Treatment:  AST 73 / ALT 88

7/6/15 Started Harvoni (12 weeks)
10/5/15 HCV NOT DETECTED (One week post EOT)
11/9/15 NOT DETECTED!!! (6 wk post)
12/21/15 NOT DETECTED (12 wk post) 
3/14/16  NOT DETECTED (24 week post)AST 26 ALT 18
SVR ACHIEVED!!! 
CURED YES!!!

Offline Maxlaw

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  • Posts: 20
Re: Recently diagnosed with HCV and looking for advice
« Reply #20 on: September 18, 2015, 04:02:24 pm »
Awesome news, Mary!! Congrats on your soon-to-be cure!!
GT 3a, dx 07/2014, baseline VL <400K, Fibrosis stage F2 prior to treatment; Completed AbbVie trial drugs ABT-493 & ABT-530 03/01/2015; achieved SVR 12 on 5/27/15...CURED!!

Offline Rosie13

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  • Posts: 297
Re: Recently diagnosed with HCV and looking for advice
« Reply #21 on: September 19, 2015, 12:05:27 am »
You did it! It's like a big maze isn't it? Hoping you have a smooth ride now .This makes me so happy to hear so many people getting their meds & getting cured.yes!!!
Labs August 15,2015
Genotype 1b
AST 112 U/L
ALT 181 U/L
HCV 192,000 IU/mL
Fibroscan F2-3
Started Harvoni Sept. 5, 2015
4wk. labs Oct. 2,2015
AST 21 U/L
ALT 27 U/L
HCV UNDETECTED!!
8wk. labs Nov.5,2015
AST 16 U/L
ALT 19 U/L
HCV UNDETECTED!!
12 wks.post tx.feb.11,2016
UNDETECTED!!!
24 wks. post tx. may 16,2016
UNDETECTED Fibroscan  F-0!!!!!

Offline MaryC

  • Member
  • Posts: 117
  • Life is not a sprint; it's a marathon.
Re: Recently diagnosed with HCV and looking for advice
« Reply #22 on: September 20, 2015, 10:02:24 am »
Thank you Rose, Maxlaw, Bree and byebyeC!

This forum has been extremely supportive, as well as, informational.  I was/am encouraged to hear about others who were approved and starting treatment, and saddened as others struggle to gain approval for needed treatment.

It seems like something needs to change.  I'm guessing the experts would agree that early treatment is the way to go to prevent long term health consequences and reduce the spread of the virus.  The barrier to treatment, however, is the high cost (an understatement) of the medication.  I saw what was charged to my insurance company - no deal was cut on the price of these medications!  I understand that the pharmaceutical industry must have some sort of incentive to continue to research and develop these valuable new medications.  There has to be some sort of happy medium, however.  It would seem (from my simplistic point of view) that if the medication cost was reduced, more individuals would be approved for treatment.  More people would gain access to this valuable treatment, and the pharmaceutical company would profit from this as well. 

Mary
GT 3a
Dx'd 4/15 not known when contracted
Labs 7/15:
-VL 537,000
-AST 32
-ALT 41
-Fibrosis score 0.46 (F1-F2)
Started tx 9/17/2015 with Daklinza + Sovaldi
6/6/16: 24 week EOT SVR!  Cured!

Offline Sookiesue2

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  • Posts: 14
  • I got this!!
Re: Recently diagnosed with HCV and looking for advice
« Reply #23 on: September 20, 2015, 12:11:19 pm »
Congratulations Mary!!  ;D
Teri
62 yr old
Gt 3a
Probably had since early 70's drug use
Dx 2003
VL 22,900
F1 F2
Started Sovaldi/Ribavarin 24 weeks on 9/10/15

Offline KimInTheForest

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  • Posts: 1,972
  • Believe in yourself
Re: Recently diagnosed with HCV and looking for advice
« Reply #24 on: September 20, 2015, 12:29:25 pm »
My medication came, and I started the Solvaldi and Daklinza today!  I am feeling very optimistic and hopeful at the start of this journey! 

Excellent Mary!! You are on your way to being cured!

best,
kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline Coach Mike

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  • Posts: 292
    • Affordable Hepatitis C Treatment
Re: Recently diagnosed with HCV and looking for advice
« Reply #25 on: November 15, 2015, 08:50:15 pm »
Hi,
Check this out:


This brings me to the next topic, flying to Australia for generic Hepatitis medicines.
Australia is now unique in the 'developed' world because there are three compound chemists now compounding Chinese Hep C APIs into consumable doses. The catch with this is that these pharmacies can only supply the medication to people who have an Australian prescription. The patient does not have to be an Australian citizen or resident but they must have an Australian doctor's prescription.
As a result of this a lot of people from countries where their government obstructs access to generic meds being sent by courier,  like Canada and the USA, are now flying to Australia to get see an Australian doctor and then buy their Hep C meds and fly home with them, a totally legal thing to do.
The process is quite simple.
I can supply you with a list of doctors who will prescribe Hep C meds for you and you can make an appointment with one of these doctors, fly to Australia with your most recent test results, see the doctor, get the prescription buy the meds begin treatment (swallow a tablet) and fly home where your own doctor can monitor your treatment.
Ideally you should also bring a letter from your doctor explaining your situation. Even a prescription if you can get one. This makes it all the easier for the Australian doctor.

If you are short of time this process should take less than one week. If you have spare time then stay a couple of weeks and enjoy the natural beauty of Australia.
If you are really pressed for time then you can speed this process up to a 3 night stay by doing it this way:
1. Make an online appointment with GP2U, an Australian online medical consultancy.
2. Meet the doctor online, with reports etc and explain the situation.
3. Get the prescription sent to you by email. (total cost AUD$100)
4. Send an email explaining your situation and attach a scan of the prescription to Sydney Compounding Chemist order@compoundingchemist.com
5. Pay for the meds before you leave your country so they are made up and waiting for you when you arrive.
6. Fly to Australia.
7. Get the meds delivered to where you are staying.
8. Start treatment
9. Fly home.

If you need any more information of this option then just email me at gregjefferys@outlook.com

SVR 12 is within easy reach. Get yourself healthy and well... LIVE LIFE

Fixhepc.com
Its legit.
Good Luck!
Mike
Genotype 1a, Biopsy:11/2014: F-1, Tx Naive
Fibrosure, 7/20/15: F-1-2
Pre tx v/l: 1,600,000, ALT: 75, AST: 48
Started generic sofosbuvir & ledipasvir: 10/23/15
4 wk labs: 11/19/15, ALT: 21, AST: 16, V/L:  UND
Started 8 week Harvoni tx: 11/20/15
8 wk labs, 12/15/15, ALT: 15, AST: 13, V/L: UND
4/11/16 12 week EOT-Undetected
7/5/16 SVR 24

Offline Lee1117

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  • Posts: 18
Re: Recently diagnosed with HCV and looking for advice
« Reply #26 on: November 18, 2015, 03:02:32 pm »
I'm new here and also new to forums. I was wondering if anyone can tell me what is the name of the test to find out what my genotype is. I was just diagnosed with HCV in September. I don't know what kind of insurance I need and right now have been put on Medicaid because my job closed down. I am currently on unemployment and I'm finding it impossible to get my health taken care of and keep up with Dept of labor's guidelines. My head is in a fog and I am having trouble concentrating. Medicaid will put a lien on a house that was left to my siblings and me, so I must get off it. It's not fair I should hurt my family any more than this once they find out.. I have probably had HCV since the mid 80's. Any help would be appreciated. Thanks.

Offline gnatcatcher

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  • Posts: 1,372
Re: Recently diagnosed with HCV and looking for advice
« Reply #27 on: November 18, 2015, 06:19:36 pm »
Hi, Lee -- Sorry you have so much on your plate all at once. To answer your question, depending on the lab, the test may be called simply HEPATITIS C GENOTYPE, or it might be called HCV RNA GENOTYPE,LIPA (or something similar).

While hep C can definitely be a factor in your brain fog and concentration issues, having to handle so many challenges at once is probably exacerbating those problems. Once your life becomes more settled, you'll probably find yourself thinking more clearly. Once your Hep C is cured, things should get even better.

The reason I am mentioning this is in case you fear that, due to the recent increase in brain fog and concentration problems, your HCV is getting worse more quickly than is probably the case. As you can see from my sig file, I had it a lot longer than you before I started treatment. You'll find quite a few people on the hep C forums who were infected about when I was and are only now getting treated AND CURED.

Welcome to the forums and feel free to start your own thread to get your questions addressed as they arise.

Gnatty
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline Rosie13

  • Member
  • Posts: 297
Re: Recently diagnosed with HCV and looking for advice
« Reply #28 on: November 18, 2015, 09:24:49 pm »
Hi Lee, like most of us here...we get the brain fog issue which can get worse with increased stress.I wonder where you were diagnosed.the Dr. or Clinic should have ordered the genotype test so you can move forward with treatment.I have insurance which proved very difficult to get treatment through. If you are on medicaid it coisuld be easier.my suggestion is to make 3 calls.Patient Advocate Foundation 800-532-5274. They have a hep c  Advocate who was excellent to work with.Next you can contact Patient Access Network 866-316-7263.I was able to apply by phone & was offered $15,000 towards Harvoni tx. Finally Gilliad ,who makes Harvoni, has a support #  855-769-7284. I hope these 3 numbers will open the doors for you to get the help you need.I just completed treatment & feel so much better.
Labs August 15,2015
Genotype 1b
AST 112 U/L
ALT 181 U/L
HCV 192,000 IU/mL
Fibroscan F2-3
Started Harvoni Sept. 5, 2015
4wk. labs Oct. 2,2015
AST 21 U/L
ALT 27 U/L
HCV UNDETECTED!!
8wk. labs Nov.5,2015
AST 16 U/L
ALT 19 U/L
HCV UNDETECTED!!
12 wks.post tx.feb.11,2016
UNDETECTED!!!
24 wks. post tx. may 16,2016
UNDETECTED Fibroscan  F-0!!!!!

Offline Lee1117

  • Member
  • Posts: 18
Re: Recently diagnosed with HCV and looking for advice
« Reply #29 on: December 02, 2015, 08:20:23 pm »
Hi Mary.. first off I would like to apologize for jumping on this thread on the day I found this forum. I have never been on a forum before and could not figure out how to post on my tiny little phone. I still don't know how to start a thread but I had to reply back to you because I am not generally a rude person and it was just wrong. I just started typing when I found anyway in. It takes a really long time to post anything thing because I can't even see the screen and I must type one finger! I just want to wish you all the best and I hope all goes smoothly for you. As for those that replied to my post, thank you so much for your input. I am sorry for the delay in reply but my cellphone caught a virus or spyware or something and I could not get back on without the security popup telling me it wasn't safe. That problem has been rectified so I wanted to thank you all for your support. Be well, sending positive energy to everyone!

Offline Lee1117

  • Member
  • Posts: 18
Re: Recently diagnosed with HCV and looking for advice
« Reply #30 on: December 02, 2015, 08:23:20 pm »
Hi Mary.. first off I would like to apologize for jumping on this thread on the day I found this forum. I have never been on a forum before and could not figure out how to post on my tiny little phone. I still don't know how to start a thread but I had to reply back to you because I am not generally a rude person and it was just wrong. I just started typing when I found anyway in. It takes a really long time to post anything thing because I can't even see the screen and I must type one finger! I just want to wish you all the best and I hope all goes smoothly for you. As for those that replied to my post, thank you so much for your input. I am sorry for the delay in reply but my cellphone caught a virus or spyware or something and I could not get back on without the security popup telling me it wasn't safe. That problem has been rectified so I wanted to thank you all for your support. Be well, sending positive energy to everyone!

Offline Rosie13

  • Member
  • Posts: 297
Re: Recently diagnosed with HCV and looking for advice
« Reply #31 on: December 03, 2015, 08:41:03 am »
Hi Lee, I too had problems posting from my phone. If you can get to a computer you will be able to see where to start your thread & also just read up on the topics already there. I consumed alot of helpful info that really got me to where I was able to get things going forward even with the stress & brainfog.Once you are familiar from a larger screen you will be able to go back to the phone & know where you are. Good luck to you on clearing HCV!
Labs August 15,2015
Genotype 1b
AST 112 U/L
ALT 181 U/L
HCV 192,000 IU/mL
Fibroscan F2-3
Started Harvoni Sept. 5, 2015
4wk. labs Oct. 2,2015
AST 21 U/L
ALT 27 U/L
HCV UNDETECTED!!
8wk. labs Nov.5,2015
AST 16 U/L
ALT 19 U/L
HCV UNDETECTED!!
12 wks.post tx.feb.11,2016
UNDETECTED!!!
24 wks. post tx. may 16,2016
UNDETECTED Fibroscan  F-0!!!!!

 


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