emo US Moderator announces our drugs are ILLEGAL

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6 years 8 months ago #4778

Well the 'Generic' thread I was posting in yesterday (where a few people had spoken up of obtaining their meds through the buyer's club) has been excised completely now.


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
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6 years 8 months ago #4779

PFFF, not everyone has the time left to wait and wait.. How ignorant not to be open to proven generics. :angry:


Tx naive, HepC since 1984
Geno 1a
VL 15 million
F4 , AST 189, ALT 295
Started APIs from Mesochem 11/24/15, will be doing 24 weeks
First blood test will be 1/5/16
Huge thanks to buyers club, Dr. Freeman, Emilio, all who helped and cared
Fingers crossed, no real sides from tx. feeling good
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6 years 8 months ago #4788

Yes, just have to give up on them and let them 'hug' each other and WAIT and pray in peace., horse to water and all that stuff,
must be some kind of Australian expression for this kind of thing.


GT 2b; since 80's, no prior tx, sofosbuvir and daclatasvir compounded from API's at Kingswood Pharmacy in Sydney, started tx nov 6,2015, undetected at 4 wks, UND at 8 weeks, UND at 1 week after EOT, UND at 4 weeks after EOT and UND at 8 weeks after EOT. " I feel GOOD!! I knew that I WOULD!"
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6 years 8 months ago #4797

So true Jan .


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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6 years 8 months ago #4800

Odd too, look at the last line in her tirade,

and we're expecting them to be approved (application is IN) in the Spring

she's either a spokesman for or very strongly self -idenitifies with Gilead
ah well...its going to take some kind of big public newsy thing in US to cut through this kind of misinformation.


GT 2b; since 80's, no prior tx, sofosbuvir and daclatasvir compounded from API's at Kingswood Pharmacy in Sydney, started tx nov 6,2015, undetected at 4 wks, UND at 8 weeks, UND at 1 week after EOT, UND at 4 weeks after EOT and UND at 8 weeks after EOT. " I feel GOOD!! I knew that I WOULD!"
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6 years 8 months ago #4805

"people who don't seem to have the patience to go through what others have . . "

I find this comment telling about the person involved, or am I wrong in reading an over controlling 'you must take your punishment like I had to' attitude into it?

I suspect in this case all we can do is work to grow the public information about generics enough that people from that site become aware of the opportunities through more open public media (big newsy things) and migrate to somewhere where they can get emotional support and valid information.

G


G3a since '78 - Dx '12 - F4 (2xHCC)
24wk Tx - PEG/Riba/Dac 2013 relapsed
24wk Tx - Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx - 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 - 22/06/17 UND
SRV12 - 27/07/17 UND
SVR24 - 26/10/17 UND
:cheer: :cheer: :cheer:
Last Edit: 6 years 8 months ago by Gaj.
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6 years 8 months ago #4809

Except she didn't have to wait. She got on what must have been one of the earliest trials back in 2012 or 2013. Oh and probably wasn't all that sick. The person currently staying with me tried to get on a trial and said Gilead heavily cherry picked applicants to ensure the best chance of getting the results they wanted.

What gets me about these sort of people is that they fail to recognise we are all grown adults, perfectly capable of making our own decisions. How dare this interfering, patronising old bat presume to tell me or anyone else how to live their life.

Conversely, she's clearly a god botherer and it's perfectly OK for her to ram her religion down my throat in her sig. Believe in whatever imaginary being's you damn well choose. But please it's highly offensive to publicly force it onto others all the time.

<Rant over>


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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6 years 8 months ago #4810

They are not ILLEGAL, they are merely unapproved - 1:14

As true as it was then as it is now.


YMMV
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6 years 8 months ago #4811

I really do not understand why some patients have to risk their lives for WAITING.... As long as the drugs help, it counts. In the end, only the patients themselves feel the pain, not other people, not any legal documents, not the one who passes or fails the legislation, even the one who invents the medications...

HP


Nishkama Karma
Cùng nhau loại bỏ Viêm gan C trên khắp thế giới!
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6 years 8 months ago #4812

This came to mind when I had read this thread "You can get busy living or get busy dying"


SVR 24
Last Edit: 6 years 8 months ago by Tina-Hill-facebook. Reason: spelling...AGAIN
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6 years 8 months ago #4814

What forum is the usa moderator on

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6 years 8 months ago #4815

This one max http://forums.delphiforums.com/hepatitiscen/messages

Its an ancient dog's breakfast of a format to negiotate, gotta say 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

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6 years 8 months ago #4818

If you're thinking of going in there max, prepare to get chased away like the devil and after whatever you might post is thoroughly subjected to an exorcism, there will be a righteous sermon in its place, probably with some praise for Saint Gilead, the Savior....you might sneak something in late at night US time that might survive until she wakes up, looks like she resides in New Mexico, so about 2 hours behind New York time.

way, way back in the dark ages, it provided me with some useful information and I actually from what I read on there gleaned enough to decide I did not want to risk the interferon....but NOW, now its another story with the misinformation and scolding. ...

So what's the Australian saying for something like this, when you can't get a fool to learn something obvious....gotta be something appropriate for this kind of foolishness, we would say something like, "can lead a horse to water but can't make him drink"


GT 2b; since 80's, no prior tx, sofosbuvir and daclatasvir compounded from API's at Kingswood Pharmacy in Sydney, started tx nov 6,2015, undetected at 4 wks, UND at 8 weeks, UND at 1 week after EOT, UND at 4 weeks after EOT and UND at 8 weeks after EOT. " I feel GOOD!! I knew that I WOULD!"
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6 years 8 months ago #4821

May I suggest that someone asks this moderator to provide independent, documented evidence that has been presented in an appropriate publication eg: BMJ to support her notion that these medications are illegal....

Tina


SVR 24

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6 years 8 months ago #4822

when you try to pin her down like that she just cites the obscure and vague and outdated US FDA/customs stuff that is such a mishmash nobody knows what it really means now. She's a "true believer", you'll never convince her of anything, she said once she doesn't like negative things posted about gilead because gilead has saved all of them,

Man, look at what she stuck on her profile:

"I'd LOVE to see the whole world cured, with Gilead's HARVONI"


GT 2b; since 80's, no prior tx, sofosbuvir and daclatasvir compounded from API's at Kingswood Pharmacy in Sydney, started tx nov 6,2015, undetected at 4 wks, UND at 8 weeks, UND at 1 week after EOT, UND at 4 weeks after EOT and UND at 8 weeks after EOT. " I feel GOOD!! I knew that I WOULD!"
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