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My kids say use a VPN that's hosted outside Australia (most of them are)

Are you going to cop a fine? Happy to throw in some dollars

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.

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

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.

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

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?

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

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.

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!!!

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.

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.

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.

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

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.