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TOPIC: Living with hepatitis C vs legal framework

Living with hepatitis C vs legal framework 5 years 11 months ago #16711

  • rohcvfighter
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Hi Everybody,

I open this post after having made some thoughts about the latest issues of whether sharing opinions and information about HCV medication might be against the legal settlements or not.

A first statement that comes into my mind is: people have soul, money don't. That's why people talk better than the money.
A first question that comes into my mind is whether "law people" really understand what happens in the soul of an HCV patient.

Therefore I am thinking that perhaps we may open in this area a clean and "politically correct" thread where we may share our experiences in a manner that will make our points of view clear, but at the same time in a manner that will not bring offense to anybody. Hopefully in the (near) future some politicians, no matter from which country, will read this information....

For this I would think of 3 questions on which everybody may reflect and answer:
1. How was/is it for you to live with Hepatitis C?
2. Was the information available on hepatitis C forums/websites useful to you? Describe shortly.
3. Did you applied in your healthcare system for a Hep C treatment? What was/is the status of your application?

@Moderators: I am aware that such a thread might wake up strong emotional feelings. If you would consider this thread as inadequate, feel free to close/remove it.

Best Regards,
RHF
In fiecare an HCV ucide peste 500000 oameni.Medicamentele generice pentru hepatita C functioneaza. Nu deveni statistica! Cauta pe Google “medicamente generice pentru hepatita C”.
HCV kills more than 500000 people every year. HCV generic drugs work. Don't become a statistic.
By sharing this Youtube video you might save someone’s life!
My TX: HEPCVIR-L[generic Harvoni]-India
SVR52 achieved
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Living with hepatitis C vs legal framework 5 years 11 months ago #16712

  • rohcvfighter
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and here are my answers:

1. How was/is it for you to live with Hepatitis C?
Sometimes living, most of the time surviving. Having constant fear of not being able to take care of the family.
Thinking on "long term" means in fact thinking on the next 2-3 years, not more. Being constantly tired and unhappy.

2. Was the information available on hepatitis C forums/websites useful to you? Describe shortly.
Yes. I was able to retrieve useful information so that I can access medication. I do not regret the decision I took.
I am thankfull to all people who shared their opinions. Without their opinions, things would have been worse today.

3. Did you applied in your healthcare system for a Hep C treatment? What was/is the status of your application?
Yes I did. Current status: pending for more than 5 years.
In fiecare an HCV ucide peste 500000 oameni.Medicamentele generice pentru hepatita C functioneaza. Nu deveni statistica! Cauta pe Google “medicamente generice pentru hepatita C”.
HCV kills more than 500000 people every year. HCV generic drugs work. Don't become a statistic.
By sharing this Youtube video you might save someone’s life!
My TX: HEPCVIR-L[generic Harvoni]-India
SVR52 achieved
The administrator has disabled public write access.
The following user(s) said Thank You: Ariel, Hieupham, GT2

Living with hepatitis C vs legal framework 5 years 11 months ago #16713

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Rohcvfighter excellent and I will write my answers during the weekend
Ty and its not emotional for me and I have had a rough trot until finding FixHepC ty this is a great idea
Cheers from Ariel :+1:
Gen 1a
Peg/inf/riba 2012(!) stop @ Wk 43 potassium low +issues (rlps week 4 post tx, VL120,000) scnds eg. adenomas.
pre sof/led VL 240,000 Fibsc F0
Day 25 <30
Day 32 UND
Week 10 UND
EOT UND ALT11AST17GGT19
SVR4 UND ALT10 AST16 GGT13
SVR8 UND ALT <9 AST16 GGT15
SVR12 UND ALT14 AST19 GGT12 Bili 5
EOT +18 ALT13 AST20 GGT9 Bili 5
EOT +21 ALT11AST15
Cured SVR12
Dysplasia Adenomas RemvdAug '16
SVR24 UND ALT11AST16
ColonoscopyClear Nov17
LumpectomyClear ‘18
LithotripsyCytoscopyBiopsy 4/18
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Living with hepatitis C vs legal framework 5 years 11 months ago #16782

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1. How was/is it for you to live with Hepatitis C?
I was diagnosed in the early 90s and probably was reckless with aspects of life as I thought I would eventually die earlier than I should. So I have regrets I didn't treat myself better, mainly for not beating addictions much sooner although managed to quit most bad things (not bloody ciggies though) over 10 years ago mainly by willpower. I've usually managed an acceptably healthy diet and moderate level of fitness regardless which most likely saved me from being a total basket case now. Then there's the social stigma which added to the anxiety and depression I've suffered intermittently for most of my life.
2. Was the information available on hepatitis C forums/websites useful to you? Describe shortly
I first phoned www.hepvic.org.au/ in June 2015 to get the ball rolling and they gave invaluable information and sent me an excellent info pack.
hepvic.org.au and fixhepc.com were both most helpful.
3. Did you applied in your healthcare system for a Hep C treatment? What was/is the status of your application?
I got a GP referral to St Vincents liver clinic who believed PBS approval would happen in December. In the meantime met a friend who told me about FixHepC and I got started on meds soon after when the December approval looked unlikely.
M 61yo HCV+ ~ 30 yrs Gt1a F2 VL 223,000 ALT 54 AST 42 Tx start Sof/Dac 17Dec15.
SVR4 at 7Apr16 ALT 22 AST 22
SVR12 at 9Jun16 ALT 23 AST 25
Melbourne, Australia
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Living with hepatitis C vs legal framework 5 years 11 months ago #16820

1. I was diagnosed in March 2015 by chance, having a high blood pressure reading Doc did usual bloods and liver function test was appalling so he ran a Hep A, B & C test and Hep C was detected.

2. There was a story in The Age newspaper about the Buyers Club who I contacted almost immediately as I was in a terrible state emotionally after diagnosis (just fatigue and headaches symptom wise but put it down to getting older).

3. I was and still probably would be on a wait list to see the liver clinic at our Hospital (when I cancelled the appointment it was 15 months on the wait list)! Thanks to James Freeman and generics from China I am now CURED and eternally grateful.....
Lives in Bendigo, Victoria
No prior treatment Genotype 1b Fibroscan 0 (only showed a bit of a fatty liver) Diagnosed in February 2015 Currently on my last week of treatment taking led/sof Last LFT normal
Insomnia the only side effect
Undetected at 4 weeks
SVR4 - undetected - all bloods good and GP very happy
SVR12 bloods to be done at end of April 2016
SVR12 - undetected!!!
Last Edit: 5 years 11 months ago by Lynne-Francis-facebook.
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