Home › Forums › Main Forum › Patient Stories › Threads best left unread, containing things better left unsaid › BBC Newsnight – mostly talk about media representation & greed
- This topic has 61 replies, 17 voices, and was last updated 8 years, 4 months ago by Gaj.
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26 June 2016 at 8:13 am #19950
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 🙂 , 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) 🙂26 June 2016 at 9:06 am #19952A reminder to everyone:
Our goal is to provide a location for a warts and all discussion of Hep C in general and DAA treatment.
To allow that to occur the moderators allow reasonable expression of people’s thoughts and feelings on the subject without intervening but expect that you refrain from threats, goading, incitement and personal invective against your fellow members.
Thank you all in advance for adhering to these principles.
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
27 June 2016 at 1:47 am #1996528 June 2016 at 4:21 am #20025Great Vid Ariel!
edited
A.L. I’ll say it again, The woman in the BBC video deserves to be kicked in the mouth. Talking about the value of this treatment that is produced for $100 and marketed for $94K. And that is the price to the individual; I was quoted that from Gilead. It’s less if you are F4 and you insurance rushes in to save you from certain death.
So many people are still uncertain of generics and the legality. So they wait, and as we know this disease can progress rapidly and cause death quickly, before an approval can be generated. People have to prove they are sick enough, it can take many months. But in a few months, someone can go from F0 to F4, it happens.
So many corporate people are just selfish scum.
I wish I could kick them all in the mouth.
28 June 2016 at 4:57 am #20030Greedfighter, I have removed part of your post. Please refrain from flaming of other members on this site. Thanking you for your anticipated cooperation.
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
28 June 2016 at 5:35 am #20034Speaking as a member of this forum, I am here to help spread the knowledge of DAAs, whether they be generic or branded, as a means of defeating the HCV pandemic.
I also think it is important for those of us who have already sought treatment to share our experiences and provide support and knowledge to those who are considering treatment or just starting out.
There is also an important role for those of us who wish to advocate for changes to the present system that restricts availability of these medications to the great majority of the 180 million people worldwide with HCV.
At the same time there will be opponents who will be seeking to denigrate our efforts and would no doubt relish the opportunity to quote us as advocating violence and other inappropriate or illegal methods. Please don’t allow them that opportunity, there are much better arguments that can be presented to refute claims by those who are attempting to protect their own or their employers interests at the expense others.
This is a widely read and respected forum with an international audience seeking our knowledge and guidance. Please take all of these factors into consideration prior to clicking on the submit button when posting here.
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
28 June 2016 at 7:25 am #20039Thank you Gaj for remaining level headed and reminding us of the importance of refraining from speaking abusively here or anywhere else for that matter. We want to be positive even when pointing out negatives. Allowing for differences is a definate positive. People come from different backgrounds and have had different life experiences. View this as an opportunity to learn, not just about others but about yourself. Ask yourself how can I turn what seems to be a negative response from someone in a positive direction. Takes work and effort for most of us to do this but the reward is a clear conscience and inner peace. If we exude that, people will naturally be drawn to us and perhaps open up the chance to share our message with them.
I’ll try harder to be sure I think before I press the submit button
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”30 June 2016 at 2:59 am #20124No problem Gaj,
However, I do hope that you at least sent A.L. a PM, as he basically ridiculed everyone here as a lunatic or drug addict, and has contributed very little of substance to this forum. You only addressed everyone else responding to his obviously antagonistic remarks.
30 June 2016 at 3:42 am #20126I have to agree with greedfghter on this. It appears that anyone responding to A.L.’s snide, degrading and toxic comments (especially if the responder is female) cops a slap on the wrist while the troll roams free.
Gaj, I get that you are doing the mod job on a voluntary basis and give hours of your time and for that I thank you but I don’t feel very welcome when someone who doesn’t know me can flame me personally while I can’t respond..
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 soEOT Results
Bilirubin 10, GGT 18, ALT 19, AST 21, VL UND12 Weeks post EOT
Bilirubin 11, GGT 16, ALT 22, AST 20, VL UND
Cured baby30 June 2016 at 4:39 am #20132Nicely put beaches,
We have no way of knowing, at least I don’t, if anything was said to A.L., concerning his volatile and condescending remarks. Personally, I was offended at the brash way he responded to the ladies on here as well. After championing the woman who represented Big Pharma in the video interview, he proceeded to treat the woman here very disrespectfully, none of it warranted and seemingly with impunity. While I differ with GF on the choice of response, I’m puzzled …
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”30 June 2016 at 5:23 am #20136Matt-Kenney-google wrote:I’m puzzled …
I am not puzzled. I think the defense of the indefensible, the outrageous behavior, selective misogyny, innuendo, threats, and ad hominem attacks from this individual clearly speak for themselves.
Gaj nailed it. This fellow was picking a fight with the clear goal (and unfulfilled hope) of getting someone, anyone to cross a line, not to win an argument, but to incite and create a cause of action.
No one here took the bait, or gave him that opening.
Well done.
30 June 2016 at 5:46 am #20139The moderators are under no obligation to make public the reasons for their actions or decisions, however this thread has been moderated twice up until now. Once to note that the moderator saw an escalating range of issues that started to include a number of participants and request EVERYONE to abide by the terms of use of this site and the second time to remove a direct non compliance with that moderator request while leaving the argument accompanying it intact.
Should members feel that either the moderation or content on this site is inappropriate, untimely or insufficient then there is a ‘report to moderator’ button on the bottom right of each post which sends a message to all Moderators and Administrators or alternatively they can PM other Moderators or Administrators with their concerns.
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
30 June 2016 at 10:13 am #20162Thanks for clearing that up Gaj,
Really never doubted that the moderators here try their best. It can sometimes be a thankless job I’m sure. So, thank you.I will not only think before I press submit, but I will use the report to moderator button as well when I see what appears to be, inappropriate, untimely or insufficient moderation. Judiciously of course.
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”30 June 2016 at 5:50 pm #20189I have just deleted a post from this thread. Continued attempts to ignore moderator requests will result in the thread being locked.
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
30 June 2016 at 7:37 pm #20193Well kids……
Gaj and I have an unofficial agreement: He minds the store, I weed the garden. But, can’t we take the tit for tat personal sniping to the PM format?
If not, he’s probably going to ask me to help behind the counter so he can get some rest or just close down the damn store.
m
Curehcvnow@gmail.com
http://forums.delphiforums.com/generichcvtxG 1a F-1
Started tx 10/23/15 (Meso sof & led) ALT 48 AST 28 v/l 1.6 mil
11/17/15 4 wk lab ALT 17 AST 16 <15
11/18/15 Started Harvoni
12/16/15 8 wk lab ALT: 15 AST: 13 V/l UND
1/14/16 Fin. Tx
7/07/16 UND SVR 24 -
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