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Sorry, but Australia is going to have to be Geoblocked 6 years 6 months ago #16715

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My kids say use a VPN that's hosted outside Australia (most of them are)
Genotype 1a
Diagnosed in 2004, had HCV for all my adult life. Until 2016!!!!
Harvoni treatment, started 19 March 2016
4 week results Bilirubin 12 down from 14 pre treatment,
Gamma 25 down from 52, ALT 19 down from 63, AST 19 down from 47,
VL <15 down from a lazy 6 million or so

EOT Results
Bilirubin 10, GGT 18, ALT 19, AST 21, VL UND

12 Weeks post EOT
Bilirubin 11, GGT 16, ALT 22, AST 20, VL UND
Cured baby
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Sorry, but Australia is going to have to be Geoblocked 6 years 6 months ago #16716

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Are you going to cop a fine? Happy to throw in some dollars
Genotype 1a
Diagnosed in 2004, had HCV for all my adult life. Until 2016!!!!
Harvoni treatment, started 19 March 2016
4 week results Bilirubin 12 down from 14 pre treatment,
Gamma 25 down from 52, ALT 19 down from 63, AST 19 down from 47,
VL <15 down from a lazy 6 million or so

EOT Results
Bilirubin 10, GGT 18, ALT 19, AST 21, VL UND

12 Weeks post EOT
Bilirubin 11, GGT 16, ALT 22, AST 20, VL UND
Cured baby
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Sorry, but Australia is going to have to be Geoblocked 6 years 6 months ago #16718

Sorry to read this. This website has been a lifeline for me and my new friends in Australia and around the world.
Really worry about the future globally, attitudes and what is important these days.
We must keep up the good fight by whatever means.
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 'In the slow lane'
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC
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Last edit: by LondonGirl.

Sorry, but Australia is going to have to be Geoblocked 6 years 6 months ago #16720

I wonder who complained?

Reading the TGA letter it appears they have at least managed to drag out the whole affair until after the PBS came in anyway - closing the gate after the horse has bolted (in Australia at least).

I also wonder if an Australian edition of the site could morph into topics that have increasingly become more popular given that many of us are EOT and approaching what we hope is SVR. My own observations of this site seem to reflect this change.

Not sure how this can be done and whether anyone posting about their reaching 12 weeks SVR then saying how good Dr Freeman was helping with generics on the way through would be? And the plain logistics of it all. Anyway, the ongoing support for us in Aus is important methinks regardless of what the TGA says.

The example of being naughty they gave was basically a call for participants in the Redemption trials - is research now to be censored for f..k sake?

All very retarded if you ask my opinion and if this echoes the likely outcome of the new trade agreements, then God help us.

Otherwise, whoever the f..kers are who cooked this complaint up - too f..king late my friend; I have finished my treatment and on my way hopefully to being rid of Hep C. As an aside, did you have to look up Wikipedia to check Tasmania is part of Australia, you dimwitted f..ks.

Again, thanks to Dr Freeman - if this means a well earned rest, you have earned it (pardon the pun).

Yours


Jeff
GT3a 1990 Failed Inter 1998, comb in 2000. HCC 2012
Started 24/52 Sof/Dac 27th October 2015.
1. Bloods 2 October 2015: AST - 165 (20-40), ALT - 265 (5-40), GGT 189 (5-50)
2, Bloods 20 November 2015: ALT etc normal; VL 19
3. Bloods 8 January 2016: AST - 40, ALT - 59, GGT 48 VL RNA UND
4. EOT 12 April 2016 - blood tests: all is well, CT scan: okay
5. AFP 11 June 2016: 4 ref< 11
6. VL July 2016: DET
7. Oct16 start treat - June17 UND
8. Jun 18, lfts okay, platelets a bit low.
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Last edit: by sabrecat.

Sorry, but Australia is going to have to be Geoblocked 6 years 6 months ago #16724

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You can speak in military code. It's simple, anybody can master it in five minutes and they can't get you for saying things like Tango, Charlie, North, ten...and it's not on google translate.
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Sorry, but Australia is going to have to be Geoblocked 6 years 6 months ago #16725

No need to be sorry here Dr. James. No apologies necessary. What you and this site have accomplished, not just there in OZ but globally, is nothing short of spectacular! You've repeatedly put your own neck on the line and the support you've gotten from your team must be both, inspiring and humbling at the same time. That's clearly reflected in this forum.
No James, it is us who are sorry that shortsighted bureaucrats can't seem to distinguish between humanitarian interests and corporate interests, because, let's not be fooled here, that's what truly motivates this move despite their citing legalities. Ha!
We're sorry most of all at the prospect that our brothers and sisters of the so called "global community" (only truly applies to corporate interests these days), are being denied access to a forum where a simple and basic human freedom is shared, speech.
It's not like we're yelling, "Fire!" in a crowd where there is no fire.
The sharing of experiences before, during and after treatment should not be legislated. And, dissemination of information about ways to achieve better results from a particular form of proven treatment should be encouraged, not silenced because you happen to live in a particular area of the globe in this, "global community".
How to access treatment, however it is accomplished, is not advertising, it's human compassion and should be applauded.
No Dr. James, you needn't apologize to us, it's the so called, "global community" that seems to be set up for certain 'members only', to the exclusion of humanity, that needs to apologize.
Thank you and your dedicated team for being our David(s) against Goliath. I, we, applauded you.



Stay strong! Get some rest, if you can. ;) ... I still wonder if you EVER sleep. ???
P.S. I believe GT2 and beaches may be onto something... hmmm
GT1a; Got it some time in the 70's; Diagnosed @1976
Tx naive
METAVIR: A2-F2
SOT May 18, 2016: CMP: AST 162 ALT 241 VL 13000000
3 weeks after SOT: AST 27 ALT 31 VL 138
Reached EOT Aug. 10, 2016 / Received svr4 results Sept. 20, 2016: AST 22 ALT 24
Hep C RNA "NOT DETECTED"
AS OF 3/20/2017 ,Hep C RNA PCR "NOT DETECTED" THAT'S SVR24!
Attachments:
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Sorry, but Australia is going to have to be Geoblocked 6 years 6 months ago #16726

This is grim news – particularly if it results in a fracturing of this forum into a tightly-controlled Australian edition and freer rest-of-the-world version to which Australian posters may no longer have unrestricted access.

I have had a quick look at the equivalent UK/EU regulations and to my inexpert eye they seem slightly less draconian than the Australian version. The operative word here being slightly. The relevant UK regulatory authority is the MHRA (Medical Healthcare products Regulatory Authority). It has produced what it calls a Blue Guide which seeks to explain its enforcement policy in rather more accessible language than the regulations themselves.

www.gov.uk/government/uploads/system/upl...76398/Blue_Guide.pdf

As far as websites are concerned Appendix 6 at pp.98-102 seems relevant. A particular red line appears to be mentioning specific prescription only medicines on the home page. I don't know whether the thinking expressed here is, or is not, also indicative of the attitude that would be adopted by the TGA in Australia.

Would a solution be to separate the forum from the buyers' club site? The buyers' club site clearly promotes prescription only medicines and so needs to decamp overseas and be geoblocked in Australia. But perhaps the forum could focus on more specifically medical and treatment-related issues and not make any reference to particular DAAs on its home page as well as banning any reference to generics by their trade name? Would this be enough to satisfy the TGA and so to retain a single worldwide forum?
Male Geno 1a F3-4 Tx Naive
Contracted early 1970s Diagnosed 2012
Started 12 wks TWINVIR (Sof/Led) on 15 Nov 2015
Pre-treatment VL 1.8 million
UND at 8 Dec 2015; UND at 12 Jan 2016
Ended 12 wks TWINVIR on 6 Feb 2016
9 Feb 2016 EOT VL test <15 PCR Negative
UND at 3 May 2016 SVR12
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Sorry, but Australia is going to have to be Geoblocked 6 years 6 months ago #16728

Great post Thurl!
Thanks for the link too ... raises some interesting questions, as you do.
Some things to thinks about in this thread.
I still feel the TGA is overreaching, trying to make a sweeping judgement apply in this situation.
Like forcing a round peg in to a square hole.
Use a big enough hammer and it can be done, but I won't be pretty, that's for sure.
Only expressing my opinion of course while I still can :whistle: :lol: B)
GT1a; Got it some time in the 70's; Diagnosed @1976
Tx naive
METAVIR: A2-F2
SOT May 18, 2016: CMP: AST 162 ALT 241 VL 13000000
3 weeks after SOT: AST 27 ALT 31 VL 138
Reached EOT Aug. 10, 2016 / Received svr4 results Sept. 20, 2016: AST 22 ALT 24
Hep C RNA "NOT DETECTED"
AS OF 3/20/2017 ,Hep C RNA PCR "NOT DETECTED" THAT'S SVR24!
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Last edit: by Matt-Kenney-google.

Sorry, but Australia is going to have to be Geoblocked 6 years 6 months ago #16729

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James-Freeman-facebook wrote: If you go here: fixhepc.com/tga

You will find a copy of a shit-o-gram from the TGA in Australia about this website and it's content.

While I would argue that this site is informational, rather than advertising, it's highly probable that argument would fail in court with a catastrophic personal impact.



Hi James, very sorry to hear this development.

But to say that FixHepC is engaged in advertising....? ... Laugh? ... I NEARLY DID!

FixHepC provides more USEFUL INFORMATION and HONEST ADVICE on LEGAL TREATMENT OPTIONS than on all the other Hepatitis C forums put together.
Diagnosed Jan 2015: GT3, A0+F0/F1. Fatigue + Brain-Fog.
Started Sof+Dac from fixHepC 10-Nov-2015. NO sides.
Pre-Tx: AST 82, ALT 133, Viral Load 1 900 000.
Week4: AST 47, ALT 58. VL < 15 (unquantifiable).
Week12 (EOT): AST 30, ALT 26, VL UND
Week16 (EOT+4): AST 32, ALT 28, GGT 24, VL UND
Week28 (EOT+16): AST 26, ALT 22, GGT 24, VL UND
Ever grateful to Dr James.

Relapsed somewhere after all that... Bummer!

Jan 2018: VL 63 000 (still GT3).
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Last edit: by Vororo.

Sorry, but Australia is going to have to be Geoblocked 6 years 6 months ago #16730

Well said Vororo!
Couldn't agree more. If it wasn't for this site I'd still be beating my head against my insurance companies impenetrable wall, while
hopelessly begging Gilead, through one of their so called "support" schemes to help me pay through the nose, at a so called, "substantially reduced price" for their product that I am now taking at a truly substantially reduced price under the Redemption Trials. THANK YOU Fixhepc!!!
GT1a; Got it some time in the 70's; Diagnosed @1976
Tx naive
METAVIR: A2-F2
SOT May 18, 2016: CMP: AST 162 ALT 241 VL 13000000
3 weeks after SOT: AST 27 ALT 31 VL 138
Reached EOT Aug. 10, 2016 / Received svr4 results Sept. 20, 2016: AST 22 ALT 24
Hep C RNA "NOT DETECTED"
AS OF 3/20/2017 ,Hep C RNA PCR "NOT DETECTED" THAT'S SVR24!
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Sorry, but Australia is going to have to be Geoblocked 6 years 6 months ago #16731

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All good points. It is outrageous that there is legal 'protection' of the public against fixhepc allegedly marketing generics and no legal protection against Gilead marketing. But there is. Having been sort of a bureaucrat, I have some sympathy for them- they can't choose to not respond to complaints, they can't ignore the law they are paid to keep an eye on. Strict liability means there is no available defence- if the facts fall into the scenario, bang, you don't get to have a reason.
The people we need to be maddest at are the complainants, and Gilead, if that is two different things, and 'trade' deal negotiators and their political representatives.
Genotype 3 30 years, 2x treatment interferon/ribavirin non responder. Cirrhosis 17 years. Fibroscan, decompensating, 40 down to 22 by 29/3/16- now down to 6.5, normal, no cirrhosis. Started Buyers Club Sof/Dac 14 Nov 15. SVR 12 29/0716
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Sorry, but Australia is going to have to be Geoblocked 6 years 6 months ago #16732

Although I appreciate your experience in the world of bureaucracy Hazel, and I know the argument, "just doin' my job." is the automated response from those tasked with having to enforce repressive regulations, still, I'm reminded, we heard a similar line of reasons given in the not so distant past, in a place called Nuremberg. Slight twist, "I was only following orders." I believe is how the refrain went back then.
Guilt lies where guilt lies ... There's plenty to go around isn't there.
GT1a; Got it some time in the 70's; Diagnosed @1976
Tx naive
METAVIR: A2-F2
SOT May 18, 2016: CMP: AST 162 ALT 241 VL 13000000
3 weeks after SOT: AST 27 ALT 31 VL 138
Reached EOT Aug. 10, 2016 / Received svr4 results Sept. 20, 2016: AST 22 ALT 24
Hep C RNA "NOT DETECTED"
AS OF 3/20/2017 ,Hep C RNA PCR "NOT DETECTED" THAT'S SVR24!
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Last edit: by Matt-Kenney-google.

Sorry, but Australia is going to have to be Geoblocked 6 years 6 months ago #16733

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Been waiting to see what strategy they would use at the end of the day. Aa clear demonstration of politics over human service .. then this is it. Guess it's finally time for this old dame to upgrade her nerd skillset so she can find some loophole to preserve her basic rights to continue accessing information in the interests of personal health and safety. How many other sites have they censored when classes of products are mentioned alongside alleged benefits. Are they going to also shut down the many sites presenting complimentary medicines many of which have never been properly trialled - whilst they conceal the generic lifesaving DAAs in a banned fixhep website. They are superficially treating this forum like some administrative compliance breach; effectively redacting it's true potential - denying our dignity to be the grown ups in our own lives....discrediting our capacity to access free information, assess it's credibility and value to our lives.
Fem. Gen 1a.18.4 kPa. IL28b - CT. Cirrhosis 4B/c. MELD 11. Portal Hypertension. Ascites. Varices. (Gr.3). post surgical Coma 2011- Tx denied. 15/09 - INR 1.2 platelets 58 (150-450) albumin 32 (35-50) bilirubin 40 (2-20) ALT 183 (0-45) AST 281(0-41) GGT 39(0-45). Liver lesions AFP 16 <8.
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Last edit: by Archer.

Sorry, but Australia is going to have to be Geoblocked 6 years 6 months ago #16734

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This is my first post, and I'd like to preface by saying that the FixHepc forum is a unique, and uniquely valuable resource to those of us who have lived (in some cases for decades) with a practically "incurable", and possibly terminal illness - only to learn that while there is now the promise of a nearly 100% solution, for the vast majority of Hep C sufferers, it is held out of reach.

One can look at the heavy handed actions which are the subject of this thread as an impediment, or as acknowledgement that this effort is truly taking hold, and making a difference. Clearly, for many of us it may literally be the difference between life, and death, a real cure, or continued suffering and decline.

Rewinding to early 2015, after learning that treatment was available, I personally waited a year for an appointment with a specialist. When I finally got one, my specialist's request for a well known Sof/Led medication was denied, and a cheaper regime, which is actually known to directly damage the liver during treatment, was offered in its place. No need to go into detail here, but I've been there, and done that - without success, and for me going there again is not a "choice", it is an absolute last resort.

Dr. Freeman must do as he believes right, and whatever he chooses to do, I will respect. That being said, his selfless humanitarian efforts in creating this site and providing counsel, a place, and resources for Hep C patients around the world to share practical information toward becoming HCV free are easily worthy of nothing less than a Nobel Prize.

Fitz
Failed Interferon 96', G1a, VL = 9 - 5.5 Million, F3/A3, AST 111, ALT 190, Generic DAA treatment Sof/Led (Mylan - India MYHEP LVIR) - 8 June, 2016
2 Week Results 20 June, 2016 AST 19, ALT 32
4 Week Results 06 July, 2016 AST 22, ALT 30, VL = 35
6 Week Results 20, July 2016 VL only = HCV RNA Detected, Non-Quantifiable <15
8 Week Results 04 August 2016, Labs, LFTs Normal, VL = UND
12 Week Results 31 August, 2016 LFTs Normal, VL = UND
EOT + 4 Weeks, LFTs Normal, VL = UND, "SVR4"
SVR12, 21 Nov 2016. CURED!!!
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Last edit: by fitz.

Sorry, but Australia is going to have to be Geoblocked 6 years 6 months ago #16735

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Matt-Kenney: I know the argument, "just doin' my job."

I know Matt, and I couldn't any longer stomach being a mouth piece for ridiculous policies and incompetent decision makers, so I quit, and have gone to law school at my advanced age to really get to grips with the rules we are all up against. And models like fixhepc are what I will defend or there is no point. But I am lucky, my partner works so I could, just, make that decision.
But remember- it was an honest bureaucrat in the Indian Patent Office who was just doing his job, within his rules, that enabled these generics to get to us too. Public servants as defenders of the workers used to be the main heroes in Bollywood blockbusters, until the 1990's and globalisation. Now, Bollywood heroes are mega rich businessmen/playboy consumers.
All our governments reflect that and our species needs to evolve to a better version- to something like James Freeman, for example.
Genotype 3 30 years, 2x treatment interferon/ribavirin non responder. Cirrhosis 17 years. Fibroscan, decompensating, 40 down to 22 by 29/3/16- now down to 6.5, normal, no cirrhosis. Started Buyers Club Sof/Dac 14 Nov 15. SVR 12 29/0716
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