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TOPIC: Beware of the hepcaustralia.com.au message board

How Safe Is Treatment? 5 years 11 months ago #2497

  • DrJames
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Hello khilde,

It was great to meet you on your journey around the world trying to access a medication that should be available in every country on every corner. Glad we could help. I guess your comments went the same way as described here, for the same reasons.....

fixhepc.com/blog/item/23-hepatitis-austr...epc-buyers-club.html

I think active passive resistance is the best way. Let's not fight the system per se, let's simply exploit existing loopholes that provision fair access. After all rules are rules. Patent = Monopoly but is trumped by Personal Importation.

I like to think of it in terms of "We see your rules" but raise your "These rules".

Of course we should be conscious that in a game of poker a Smith & Wesson trumps 4 aces!
YMMV
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How Safe Is Treatment? 5 years 11 months ago #2520

  • Chester
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I'm posting this here as well as in the Doc's link above.. For heaven's sake, if she opens up the forum to new members again, don't go rushing over ther causing trouble. Just beware of this hepcaustralia.com.au aka AHCS forum, good people. There's something not right going on there.

Hi, I'm Chester. I just thought I should clarify something about the above link to www.hepcaustralia.com.au. When I say clarify, I use that term extremely loosely.

As far as I can tell, hepcaustralia.com.au, aka AHCS, is unrelated to Hepatitis Australia. AHCS appears to be run by someone who identifies themselves only as cp@gc. Fortunately, she is very secretive about her real identity so I don't have to worry about defaming her.

I ran foul of cp a while back. Someone else who is now a member of the fixhepc forum started a thread on the AHCS forum asking if anyone was on generics. They actually just wanted to compare notes. Other forum members started asking questions. I joined the thread and told them about my personal experience on generics.

It was all very civilised. Then cp turned up and said to another member that they shouldn't have anything to do with generics unless they had met someone taking them in person. I called her out on this firstly, because I thought it was just a stupid thing to say. How does meeting someone on generics tell you anything about the safety and efficacy of the drugs. Indeed, how by meeting someone do you know they are taking generics or even if they have hep c!

Secondly, it was clear to me that cp's comment was a backhanded and cowardly way of calling my own and the other generic user who started the thread's credibility into question. And in fact, she then went on to suggest one or both of us were possibly spammers and to accuse me of promoting a single cause despite the fact the thread was called "Indian Sofosbuvir" and other members of the forum were urging myself and the other poster to share information about generics.

She also claimed at this point that the forum was privately run and funded entirely by her. Up to this point I too had thought the forum was related to Hepatitis Australia, a mistake the good doctor in the email you quote also appears to have made given s/he refers to the AHCS forum as an "official" HCV support network. And an easy mistake to make, the names are so similar.

Despite cp's readiness to call other people's credibility into question, there is no way to verify her own. Nowhere does she identify herself by her real name. What's more, there is not even any way to contact her via email even though the site's FAQs state:
Why can’t I login?

There are several reasons why this could occur. First, ensure your username and password are correct. If they are, contact the board owner to make sure you haven’t been banned.

I know this because a later post by me was deleted as was my account. All without any notification from cp at all. Very poor forum etiquette to say the least.

I had left the thread after taking a parting shot at cp by accusing her of being big on love and support but short on supporting people to get cured and comparing her to Belle Gibson. But I looked back in a few weeks later only to discover to my horror that people in that same thread were claiming, among other things, that:

- APIs were not the real thing and that generic users had to make their own drugs from them. I presume this referred to people encapsulating their own meds but anyone reading it could easily take it to mean that people were cooking up their meds on the stove like home bake heroin.

- That the excipients/fillers were an essential part of the medication.

- That Doc James was making $1000 per patient profit on the drugs.

- That Greg Jeffreys was doing what he's doing purely for his own self aggrandisement.

So I jumped in to correct these fallacies and that's when she deleted my post and account without notice. I have since been told she claims to have had to close the forum to new members because of fixhepc. Whatever that means.

I've come to the conclusion that AHCS is actually a privately run forum. I think there is something quite sinister going on there. In the short time I posted there, I kept getting an uneasy feeling that cp liked to keep people feeling sick and helpless because it gives her control over them. It has occurred to me that all medical forums are potentially honey pots for people who suffer from factitious disorders and Munchausen by proxy type syndromes. I think this may be the sort of thing that is going on at AHCS. It is not the only time I have witnessed it. There is another blog I have read which I won't name because the author appears to use their real name. They claim to be a hep c sufferer who has failed treatment 5 times including Harvoni. But upon close reading of their blog their story simply does not add up. There is something amiss. Nevertheless, they have continued to convince some other well respected hep c bloggers with their story.

In short, charlatans come in all shapes and sizes in the hep c world.
Huon Valley, Tasmania
Hep C+ since 1980s
Genotype 1b
F3/4
VL 480,000
Started Indian Sof and Riba, BMS Dac (comp access) 28 August 2015
UND at 4 weeks
Finished treatment 19 November 2015
12 February 2016 UND SVR12
Last Edit: 5 years 11 months ago by Chester. Reason: Formatting
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How Safe Is Treatment? 5 years 11 months ago #2523

  • zhuk
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Think you may be right there, Chester. I tried to register on the AHCS forum before I found out about fixHep C, to no avail...my registration disappeard off into the electronic ether never to be seen again.

And a good thing too, otherwise I might have stopped searching and never found this wonderful site. So, all props to her apparent paranoia and control-freakery on that score :) lol
GT1a since 1988, diagnosed 1990
F0, tx naive
VL 262,000 ALT 40 AST 26 GGT 13 Fibroscan 04/12/15 - 2.9
Started Mesochem sof/dac 12 weeks 01/01/2016
11/02/2016 - 6 weeks UNDETECTED
AST 26
ALT 26
Last Edit: 5 years 11 months ago by zhuk.
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How Safe Is Treatment? 5 years 11 months ago #2525

  • Chester
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Hee hee. Yes her paranoia has actually had doubly desirable effects. By going about deleting posts and accounts she attracted enough attention that I know several of that board's members came here in search of generics. At the same time, by closing the board to new members, people who may not know enough to know any better are being spared from reading the quackery and utter bs she posts on her board.

As John Gilmore said, the Internet interprets censorship as damage and routes around it.

I might add that among the rubbish she spouted on her forum was the claim that mothers should put the oxygen mask on their child first in the case of a plane crash. I pointed out this was not the correct procedure and it was in fact the other way around. But she deleted the post where I said it. As the daughter of a former Qantas air navigator that irks me more than anything else that happened in my encounter with her. It's proof that people like her can be down right dangerous.
Huon Valley, Tasmania
Hep C+ since 1980s
Genotype 1b
F3/4
VL 480,000
Started Indian Sof and Riba, BMS Dac (comp access) 28 August 2015
UND at 4 weeks
Finished treatment 19 November 2015
12 February 2016 UND SVR12
Last Edit: 5 years 11 months ago by Chester. Reason: Grammar
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How Safe Is Treatment? 5 years 11 months ago #2526

  • berrinice
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I too have been deleted from the site. I thought they were attached to Hep nsw. She idolizes helen tyrell. She certainly gives us a taste of what imposed censorship would be like. Apart from health, environment and other social justice issues to fight for, I am adding freedom of the press/free speech. Thanks AHCS for helping me experience tyrannical censorship first hand. If you really want to know who is currently behind this forum, Australasian forum moderators will know. I am still pretty sure they are good people. What I find hard is these hep organisation use 3000 hep related deaths in the past year to shock and pressure the government but wont lift a finger to save potential hep c victims from death, not publishing reputable pathways to generics. It is simply so evil. kindly
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How Safe Is Treatment? 5 years 11 months ago #2530

  • Chester
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I think the joke's on cp at the moment. She deleted the posts of (and presumably banned) a hepatologist. Granted a hepatologist travelling incognito but nevertheless, comedy gold. You couldn't make this stuff up. :lol:
Huon Valley, Tasmania
Hep C+ since 1980s
Genotype 1b
F3/4
VL 480,000
Started Indian Sof and Riba, BMS Dac (comp access) 28 August 2015
UND at 4 weeks
Finished treatment 19 November 2015
12 February 2016 UND SVR12
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How Safe Is Treatment? 5 years 11 months ago #2532

  • berrinice
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From what I can remember it was going to be closed down cause nobody was using the site. But I think a few from nsw rescued it. It is really quiet. Not much traffic. The most helpful thing they can do for heppers is to close it down. A hep queensland worker was bragging on Australasia forum how wonderful their information fact sheet was, my criticism was tame regarding its obvious shortfall. "go find your own overseas generics " no mention of the successful rebellion getting authentic generic medicine. I didn't bother doing the survey cause I knew it would lead people nowhere. kindly
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How Safe Is Treatment? 5 years 11 months ago #2534

  • CJ
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I'm a member there, and not happy with people being deleted & cut off from the forum.

I've been there for about 7 years, I had to come here to find out the info on the generics.

I am so thankful for this forum, and am incredibly grateful to the wonderful Dr James for helping my son.
I will be eternally grateful to him & this site for helping me. :)

x
J the young dragon slayer is:
HepC 1a since birth
Male aged 15
VL 2000000
Started Twinvir/ 10-11-15-then Sof/led.
NO sides so far !
after one week VL : 37
after 4 wks VL : UND !
EOT 2/2/16 UND.!
4 wks. post tx results....pending....
7/3/16 VL result : 4 week post tx: SVR !
12 weeks SVR !
24 wks SVR yeeaa!!
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Beware of the hepcaustralia.com.au message board 5 years 11 months ago #2541

  • Alsdad
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I've started this new thread to move this important discussion away from an Experts Corner thread started by Doc Freeman, and give it it's own life.
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