Hep C sufferers’ ire at activist-website ban

This topic has 48 replies, 20 voices, and was last updated 8 years, 3 months ago by sabrecat.

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15 June 2016 at 4:48 am #19070
Hieupham
- Topics: 9
- Replies: 50
- Total: 59
- Recovery Champion
@hieupham
“A website which raises awareness about a medical cure for hepatitis C could be hidden from Australians”. WHY???
http://thenewdaily.com.au/life/2016/06/14/hep-c-sufferers-angered-activist-website-ban/

Nishkama Karma
C√πng nhau lo·∫°i b·ªè Vi√™m gan C tr√™n kh·∫Øp th·∫ø gi·ªõi!
15 June 2016 at 5:08 am #19072
beaches
- Topics: 10
- Replies: 750
- Total: 760
- Guardian Angel
@beaches
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
15 June 2016 at 5:34 am #19074
sabrecat
- Topics: 2
- Replies: 258
- Total: 260
- Guardian Angel
@sabrecat
Hieupham wrote:

”A website which raises awareness about a medical cure for hepatitis C could be hidden from Australians”. WHY???
http://thenewdaily.com.au/life/2016/06/14/hep-c-sufferers-angered-activist-website-ban/

Yes, WHY?

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

Jeff
15 June 2016 at 7:47 am #19083
Matt-Kenney-google
- Topics: 1
- Replies: 423
- Total: 424
- Guardian Angel
@matt-kenney-google
Great article Hieupham! … looks like SOMEBODY got to Richard Woolverage! That deserves a hearty “YES! ” indeed

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”
15 June 2016 at 9:00 am #19091
Tina-Hill-facebook
- Topics: 28
- Replies: 705
- Total: 733
- Guardian Angel
@tina-hill-facebook
A well written article that hopefully will rattle some chains.

SVR 24
15 June 2016 at 10:27 am #19094
GT2
- Topics: 1
- Replies: 293
- Total: 294
- Guardian Angel
@gt2
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 Na√Øve)
10/04/16: (Start tmt) Sofovir +DaclaHep (SOF + DCV) by Hetero Labs in India
09/05/16: ALT 34, VL: NOT Detected 🙂 , FBG 11.9
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) 🙂
15 June 2016 at 10:43 am #19096
Hazel
- Topics: 45
- Replies: 369
- Total: 414
- Guardian Angel
@hazel
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
15 June 2016 at 10:49 am #19097
coral
- Topics: 8
- Replies: 598
- Total: 606
- Guardian Angel
@coral
Great article – thanks for posting Hieupham.

Anne says ” The TGA complaint follows the letter of the law but ignores the spirit of humanity”. Indeed!
15 June 2016 at 10:51 am #19098
Tina-Hill-facebook
- Topics: 28
- Replies: 705
- Total: 733
- Guardian Angel
@tina-hill-facebook
Ive joined the party GT2 – just waiting to for my comment to be moderated.

SVR 24
15 June 2016 at 10:56 am #19099
GT2
- Topics: 1
- Replies: 293
- Total: 294
- Guardian Angel
@gt2
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 Na√Øve)
10/04/16: (Start tmt) Sofovir +DaclaHep (SOF + DCV) by Hetero Labs in India
09/05/16: ALT 34, VL: NOT Detected 🙂 , FBG 11.9
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) 🙂
15 June 2016 at 10:56 am #19100
Tina-Hill-facebook
- Topics: 28
- Replies: 705
- Total: 733
- Guardian Angel
@tina-hill-facebook
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 Hopefully our American and UK friends will be up and about soon to add their thoughts.

SVR 24
15 June 2016 at 11:16 am #19103
Ariel
- Topics: 3
- Replies: 1,060
- Total: 1,063
- Guardian Angel
@ariel
Waiting

Yep you’re still there GT2
15 June 2016 at 8:35 pm #19146
Matt-Kenney-google
- Topics: 1
- Replies: 423
- Total: 424
- Guardian Angel
@matt-kenney-google
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

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”
16 June 2016 at 5:00 am #19177
Ariel
- Topics: 3
- Replies: 1,060
- Total: 1,063
- Guardian Angel
@ariel
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

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

https://mobile.twitter.com/seymour_akshun
16 June 2016 at 5:29 am #19184
Sven
- Topics: 6
- Replies: 327
- Total: 333
- Guardian Angel
@sven
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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