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TOPIC: Would you like to be part of a social movement?

Would you like to be part of a social movement? 6 years 3 weeks ago #432

  • DrJames
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“I alone cannot change the world, but I can cast a stone across the waters to create many ripples.”

― Mother Teresa

I was going to entitle this post "Do you have more balls than brains?" but that seemed a bit sensationalist. It is however, probably true, so read on at your peril.

Challenging the existing status quo has always been risky, and often ends badly. There is, as far as I know, no story that ends "and the whistleblower lived happily ever after".

FixHepC is blowing a whistle on Big Pharma and saying patient rights need to be balanced with patent rights.

It is reasonable to assume that there are people who believe profits come before patients. Indeed, once upon a time a friend of mine said "In the race between the greater good and self interest, back self interest every time".

He's clever, I'm idealistic. He's also rich, lives in a mansion, and has a happy life. There is a lot to be said for keeping the status quo.

So if that has not put you off don't say I didn't warn you and read on...

With 155,000,000 people with Hep C the efforts of any single person can't really do much. As a single doctor I can only see a few thousand patients a year so I will be long gone before making a dent, but if we can work as a group to find like minded people, and they can find more....

It has been pointed out that this site may be shut down, and indeed it may be. But what if we had many sites, in many languages, in many locations?

If you would like to be part of a social movement that says "enough is enough"

AND

You are also willing to take on the burden of risk the Buyers Club would love to hear from you.

Before you apply please watch this short Muppets video. You need to know how this story ends.

Our story may not end like that but it could...

YMMV
Last Edit: 6 years 3 weeks ago by DrJames.
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Would you like to be part of a social movement? 6 years 3 weeks ago #433

  • Alsdad
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I'm prepared to set up/help set up a UK forum Doc. But I'd need techie help with software maintenance/security, which.is something I know almost nothing about.
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Would you like to be part of a social movement? 6 years 3 weeks ago #434

  • chertes
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I'll try to make it hapen in Romania or even eastern Europe
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Would you like to be part of a social movement? 6 years 3 weeks ago #436

  • wilko johnson
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hi,alsdad.a friend of mine works in i.t security,has done for many years,and for a lot of that time for a big pharma co.i will ask him if he is willing to help in anyway.can you let me know witch doc you saw at pallmall?thanks
gt3 started sof dac jan 2016 now 48 wks svr. not the real wilko johnson just have the same real name. shropshire uk
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Would you like to be part of a social movement? 6 years 3 weeks ago #441

  • Sirchinenge
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I don't think the Genie can be put back in the bottle this is going to reach a critical mass.

Alsdad, shoot me a message if you need help with setting up a forum, you'll be delighted to know
its not a difficult task.
Sob/Dac from Oct 29 2015
Geno 1b
Fiberscan 9.9 Pre treatment
Fiberscan 7.4 week 10
VL 1.3 million pre treatment
Week 2.5 VL 96
Week 5.5 VL 17
Week 10 VL UD
SVR 3 UD
SVR 16 UD
Cured:
All liver functions in normal ranges.
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Would you like to be part of a social movement? 6 years 3 weeks ago #463

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I am able and willing,have a lot of experience with this disease and many useful worldwide contacts.I was one of the first on Harvoni trials, have been clear for 2 years and would love to help people get the same result.
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Would you like to be part of a social movement? 6 years 3 weeks ago #466

  • Nadia
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gcforum.info/
This one already exist for the russian speaking community.
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Would you like to be part of a social movement? 6 years 3 weeks ago #468

  • berrinice
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Even though I brought thru Greg I will support you 100%.
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Would you like to be part of a social movement? 6 years 3 weeks ago #629

  • Bloot
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Another article in todays Sydney morning herald about how the hits to this site have increased from 5000 to 217 000 since last weeks article that alerted me to this site

I read the case story of the 58 year old brickie to my wife and said it sounds like me
Well it probably sounds like 100's of thousands of people out there being screwed over by those grubs from Gilead

Dr Freeman, what you are doing is brilliant and I don't know what I can do to help, but I'm in
I'll do whatever - I don't mind taking risks. in fact, taking risks is built in to me

Up here in the Blue Mountains we have an active mountain bike community
We also have an active aging, fun police community that think we are out to destroy the bush
I won't bore you with details, but all our MTB forums were monitored by the fun police and it led to infighting and mistrust

I have a real aversion to being told what to do, so set up a private facebook page - all members have to apply to get in
usually by looking at their profile I can tell they are legit, but for something like this, just a small explanation perhaps
The good thing about a blocked FB page is that no one can see the content
Perhaps more importantly, it is the spot everybody can go to if this site is closed down for example
We could give the new website address/es to those on the FB page

Anyway, it's just an idea
If anyone is interested, message me or reply or whatever

Personally, I don't care if Gilead drop their prices and it is listed by the PBS
I would prefer to go through the buyers club and doctors that aren't afraid to do the right thing rather than the easy thing

As someone said, the genie is out of the bottle and it will never get put back in
52 y.o. G3a for about 30 years
Previous tx 2004 interferon/ ribavarin
2004: ALT 624 AST 263

Pre tx test 23/10/15: ALT 153 AST 128 VL 11 849 493
6/11/15: Sof/ dac started
26/11/15: ALT 41 AST 41
7/12/15: ALT 36 AST 30 Virus undetected

2004 biopsy F3
Fibroscan appt Jan 11 2016.
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Would you like to be part of a social movement? 6 years 3 weeks ago #630

  • miko3
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I would love to help in any way I can,in fact I feel morally obliged to.
If it means pitching in some of my hard earned savings to facilitate a bulk buy I'm up for it.
Gen 1b 40yrs,tx naive, f3/f4.VL too high to quantify.
Started tx 12Oct.sof and riba India via greg.Dac from Mesochem.
4wk result virus not detected,all liver functions in normal ranges.
Only SE intermittent insomnia.Feel great and grateful otherwise
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Would you like to be part of a social movement? 6 years 3 weeks ago #637

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Hello Nadia, Does this russian site need any help? I heard rumours of customs issues? We are in contact with many of the manufacturers so may be able to facilitate trial shipments.
YMMV
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Would you like to be part of a social movement? 6 years 3 weeks ago #638

  • Nadia
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Hello Dr Freeman,
Yes there are a couple of packages still not delivered since July and another one is in dispute by customs. I think it would be a good idea to speak to the site admin and have the Byers club section opened for you. In particular the news from Bangladesh would be very interesting to share.
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Would you like to be part of a social movement? 6 years 3 weeks ago #639

  • tweakmax
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I have a private fb group. Let me know if you want to use that to dessiminate info doc
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Would you like to be part of a social movement? 6 years 3 weeks ago #642

  • Alsdad
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I'm working on a UK based forum. Should I go public with it, or just keep it in reserve for now?
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Would you like to be part of a social movement? 6 years 3 weeks ago #665

  • Nadia
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Great stuff
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Last Edit: 6 years 3 weeks ago by Nadia.
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