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Hep C sufferers’ ire at activist-website ban

TOPIC: Hep C sufferers’ ire at activist-website ban

Hep C sufferers’ ire at activist-website ban 5 years 11 months ago #17780

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"A website which raises awareness about a medical cure for hepatitis C could be hidden from Australians". WHY???
thenewdaily.com.au/life/2016/06/14/hep-c...ctivist-website-ban/
Nishkama Karma
Cùng nhau loại bỏ Viêm gan C trên khắp thế giới!
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Hep C sufferers’ ire at activist-website ban 5 years 11 months ago #17782

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YES!!!!!!
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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Hep C sufferers’ ire at activist-website ban 5 years 11 months ago #17784

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Hieupham wrote:
"A website which raises awareness about a medical cure for hepatitis C could be hidden from Australians". WHY???
thenewdaily.com.au/life/2016/06/14/hep-c...ctivist-website-ban/

Yes, WHY?

I am still awaiting a reply from my email to the Health Minister.

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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Hep C sufferers’ ire at activist-website ban 5 years 11 months ago #17793

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Great article Hieupham! ... looks like SOMEBODY got to Richard Woolverage! That deserves a hearty "YES! " indeed :lol:
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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Hep C sufferers’ ire at activist-website ban 5 years 11 months ago #17801

A well written article that hopefully will rattle some chains.
SVR 24
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Hep C sufferers’ ire at activist-website ban 5 years 11 months ago #17804

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Good article ... I left a comment responding to David Piper:

David Pieper • 3 hours ago

This is a non-story as the drugs are now available to every Australian for the cost of a regular prescription. There are no hepatitis C patients that are angered, but there are over 13,000 of them who are delighted to have commenced treatment since March with drugs have been made available on the PBS

GT2: Really? 13,000 out of 230,000 HCV sufferers in Australia ... 5% may be "delighted" ... however, 95% are angry ... now that's an ongoing story ...

Went back to check if there was as response to it.

Yep ... it was deleted ... say no more.

:(

P.S.

Always remember ... whoever pays the piper calls the tune ...
1983: Hospitalised with Acute non-A, non-B Hepatitis after ICU blood transfusion 3mths earlier => HCV GT2
22/02/16: (pre-tmt) ALT 61, VL 2.48 IU/ml Hepascore 0.32 (F1/2), fatigue, brain fog, bloating (Treatment Naïve)
10/04/16: (Start tmt) Sofovir +DaclaHep (SOF + DCV) by Hetero Labs in India
09/05/16: ALT 34, VL: NOT Detected :cheer: :) , FBG 11.9 :huh:
17/6/16 FBG 5.7; PPBG (@14.22) 6.9 (@ 20.45) 7.1; BP 124/72
:) (Accu-Chek Mobile & Omron Auto BP Monitor) :)
Last Edit: 5 years 11 months ago by GT2.
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Hep C sufferers’ ire at activist-website ban 5 years 11 months ago #17806

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Wait and see GT2, I left one too and it seems to take quite a while to be moderated.
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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Hep C sufferers’ ire at activist-website ban 5 years 11 months ago #17807

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Great article - thanks for posting Hieupham.

Anne says " The TGA complaint follows the letter of the law but ignores the spirit of humanity". Indeed!
G1a probably early 1980's, Biopsy F1(2010), F2-F3(2015). VL 5+mill; 2+mill (2014) Tx naive. Accessed Sof/Led through Dr Freeman at GP2U and Buyers Club (lifesavers!!!)
Commenced tx 12/11/15. 9 wk: VL <15 Detected but LFT = Normal 12 week results: UND (Yay!) Due to slow response commenced Sof/Dac 4 Feb for 12 weeks. EOT @ 24 weeks 27 April 2016. (With thanks to Dr Freeman et al). SVR11 result: VL 1,950,000. It's back!
New tx 030916 (Viekira Pak, Solvadi, Ribavirin UND @ 111116. EOT 170217.
SVR12 and SVR 24...
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Hep C sufferers’ ire at activist-website ban 5 years 11 months ago #17808

Ive joined the party GT2 - just waiting to for my comment to be moderated.
SVR 24
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Hep C sufferers’ ire at activist-website ban 5 years 11 months ago #17809

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Hi guys

My comment was up, then down, now back up ... you may be right ... just takes time to be moderated.

Thanks

GT2
1983: Hospitalised with Acute non-A, non-B Hepatitis after ICU blood transfusion 3mths earlier => HCV GT2
22/02/16: (pre-tmt) ALT 61, VL 2.48 IU/ml Hepascore 0.32 (F1/2), fatigue, brain fog, bloating (Treatment Naïve)
10/04/16: (Start tmt) Sofovir +DaclaHep (SOF + DCV) by Hetero Labs in India
09/05/16: ALT 34, VL: NOT Detected :cheer: :) , FBG 11.9 :huh:
17/6/16 FBG 5.7; PPBG (@14.22) 6.9 (@ 20.45) 7.1; BP 124/72
:) (Accu-Chek Mobile & Omron Auto BP Monitor) :)
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Hep C sufferers’ ire at activist-website ban 5 years 11 months ago #17810

GT2 wrote:
Good article ... I left a comment responding to David Piper:

David Pieper • 3 hours ago

This is a non-story as the drugs are now available to every Australian for the cost of a regular prescription. There are no hepatitis C patients that are angered, but there are over 13,000 of them who are delighted to have commenced treatment since March with drugs have been made available on the PBS

GT2: Really? 13,000 out of 230,000 HCV sufferers in Australia ... 5% may be "delighted" ... however, 95% are angry ... now that's an ongoing story ...

Went back to check if there was as response to it.

Yep ... it was deleted ... say no more.

:(

P.S.

Always remember ... whoever pays the piper calls the tune ...


Hi GT2
your comment is still up there mate - ive just read it now :cheer: Hopefully our American and UK friends will be up and about soon to add their thoughts.
SVR 24
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Hep C sufferers’ ire at activist-website ban 5 years 11 months ago #17813

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Waiting :whistle:

Yep you're still there GT2
Gen 1a
Peg/inf/riba 2012(!) stop @ Wk 43 potassium low +issues (rlps week 4 post tx, VL120,000) scnds eg. adenomas.
pre sof/led VL 240,000 Fibsc F0
Day 25 <30
Day 32 UND
Week 10 UND
EOT UND ALT11AST17GGT19
SVR4 UND ALT10 AST16 GGT13
SVR8 UND ALT <9 AST16 GGT15
SVR12 UND ALT14 AST19 GGT12 Bili 5
EOT +18 ALT13 AST20 GGT9 Bili 5
EOT +21 ALT11AST15
Cured SVR12
Dysplasia Adenomas RemvdAug '16
SVR24 UND ALT11AST16
ColonoscopyClear Nov17
LumpectomyClear ‘18
LithotripsyCytoscopyBiopsy 4/18
Last Edit: 5 years 11 months ago by Ariel.
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Hep C sufferers’ ire at activist-website ban 5 years 11 months ago #17852

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Got my 2 cents in to Mr. Pieper's comment as well :) and as of 8 am PST here in the US, ALL of your Awesome Aussie comments were still up :lol:

MK
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!
Last Edit: 5 years 11 months ago by Matt-Kenney-google.
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Hep C sufferers’ ire at activist-website ban 5 years 11 months ago #17881

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Well done all
I'm under a nom de plume on that Pieper thread in my reply due to Australia's stupid prejudices and all.
Anyway,
I wanted to know more about this man who is clearly not about treating all asap from his glib comment. He has a strong profile for the PBS.

Also, Thankyou Hieu amazing reply to the other discreditor suggesting we are guinea pigs!

Ty also international friends :+1:

www.hepmag.com/blog/will-prioritised-treatment

mobile.twitter.com/seymour_akshun
Gen 1a
Peg/inf/riba 2012(!) stop @ Wk 43 potassium low +issues (rlps week 4 post tx, VL120,000) scnds eg. adenomas.
pre sof/led VL 240,000 Fibsc F0
Day 25 <30
Day 32 UND
Week 10 UND
EOT UND ALT11AST17GGT19
SVR4 UND ALT10 AST16 GGT13
SVR8 UND ALT <9 AST16 GGT15
SVR12 UND ALT14 AST19 GGT12 Bili 5
EOT +18 ALT13 AST20 GGT9 Bili 5
EOT +21 ALT11AST15
Cured SVR12
Dysplasia Adenomas RemvdAug '16
SVR24 UND ALT11AST16
ColonoscopyClear Nov17
LumpectomyClear ‘18
LithotripsyCytoscopyBiopsy 4/18
Last Edit: 5 years 11 months ago by Ariel.
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Hep C sufferers’ ire at activist-website ban 5 years 11 months ago #17888

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Great article.
In good health to all.
Contracted HCV 1980's
Geno Type 1a
F3 ( doc says once treated I'll be F2 maybe F1)
Meds shipped 6/17/2016 arrived early 7/2016

Viral count - 3,471,080

4 week quantitative bloods: August 17, 2016. I have been diagnosed as <15 (told undetected)

8 week quantitative bloods: September 14th. I have been diagnosed as <15 (told undetected)

11 week PCR RNA Qualitative bloods: September 26th 2016 - Undetected

December 19th 2016: Cured!
Viral count: zero!!!
2018 viral count: still zero!
Cured!
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