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, 5 months ago by Gaj.
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14 June 2016 at 8:45 am #19036
Everyone here seems to get it except you A.L.
Beaches set the nail and khilde hammered it home. GF, fitz and Ariel all exercised that thing you got all up over. Freedom. It’s true, freedom to work wherever they’ll have you is a nice concept but not the real issue here is it. Freedom of speech is a nice concept too and should be cherished, but it can be abused. They weren’t abusing it and neither were you. Just a misunderstanding … happens when people exercise their freedoms without forethought of how others might misread their intent. The person being interviewed at the end of the video was exercising her freedom of speech, though clearly under the restraints placed on her by her employers. IMHO, she was telling me I should be silently, happy enabling billionaires to become even richer, so that they and their offspring can continue to live in luxury beyond my imagination into the indefinite future, while spending my families future to procure there “branded” cure. Made me think of Oliver Twist. “May I have a little more porridge … please sir?”
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”20 June 2016 at 11:46 am #19541Hi Everybody,
I just finished the translation work for this video and I would need some support:
– I have a problem in understanding the names of the people from this video. Could someone write it to me?
– Does anybody know a good video tool to preserve the quality of the video and embedded the subtitle in it? The software I use creates a huge video file. I prefer to embed the subtitle instead of using Youtube caption stuff….
– Does anyone know if it is allowed to post such a video on youtube? Do I have to ask for BBC newsnight permission? I would like to avoid that the video is removed by not having copyright bla bla….Thanks
In fiecare an HCV ucide peste 500000 oameni.Medicamentele generice pentru hepatita C functioneaza. Nu deveni statistica! Cauta pe Google “medicamente generice pentru hepatita C”.
HCV kills more than 500000 people every year. HCV generic drugs work. Don’t become a statistic.
By sharing this Youtube video you might save someone’s life!
My TX: HEPCVIR-L[generic Harvoni]-India
SVR52 achieved20 June 2016 at 1:36 pm #19546The issue with the video tool has just been fixed.
I would still need some additional support with the English for the timeslot 3min16 – 3min25. Could perhaps someone write me what the lady is saying? I do not clearly understand what she is saying.SOLVED !!! I received the text Thank you V.
Thank you,
Cheers
In fiecare an HCV ucide peste 500000 oameni.Medicamentele generice pentru hepatita C functioneaza. Nu deveni statistica! Cauta pe Google “medicamente generice pentru hepatita C”.
HCV kills more than 500000 people every year. HCV generic drugs work. Don’t become a statistic.
By sharing this Youtube video you might save someone’s life!
My TX: HEPCVIR-L[generic Harvoni]-India
SVR52 achieved20 June 2016 at 4:07 pm #19552rohcvfighter wrote:I would still need some additional support with the English for the timeslot 3min16 – 3min25. Could perhaps someone write me what the lady is saying? I do not clearly understand what she is saying.
SOLVED !!! I received the text Thank you V.
Thank you,
CheersHi ROHCVfighter, are you saying you don’t need assistance with the timeslot 3 min 16 to 3 min 25?
If you still need it, I’ve written it down.And btw a few years ago my dentist handed me a questionnaire about that very thing among others. I asked her did she not have confidence in the practice’s sterilisation and protection procedures. I had no conscience issue at all in answering no to all the questions which she had no right to be asking anyway
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 baby20 June 2016 at 4:24 pm #19555Hi B,
Thank you for your willingness to support me with the text 3m16-3m25, the issue has been solved in between and there is no need for you to write it.
What I would need further is an opinion about standard youtube licensing. Am I allowed to upload the movie with the Romanian subtitle, provided that I will specify that the original source is from BBC Newsnight?
Cheers,
RHF
In fiecare an HCV ucide peste 500000 oameni.Medicamentele generice pentru hepatita C functioneaza. Nu deveni statistica! Cauta pe Google “medicamente generice pentru hepatita C”.
HCV kills more than 500000 people every year. HCV generic drugs work. Don’t become a statistic.
By sharing this Youtube video you might save someone’s life!
My TX: HEPCVIR-L[generic Harvoni]-India
SVR52 achieved20 June 2016 at 4:38 pm #19556Hey, R
Have you looked at this?
https://www.youtube.com/static?gl=AU&template=termsthis might help as well
http://www.kobaltmusic.com/page-youtube-licensing-faq.phpI’m no expert so my opinion is not worth anything. Maybe there are some lawyers on the forum?
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 baby20 June 2016 at 4:46 pm #19558Hi B,
I am not a lawyer neither… My understanding, but I need to read the terms again, it that I can use anytime a link (on whatever website I want) pointing to a video resource from youtube. What I am not clear is whether I could upload the same video on youtube, containing the subtitles, as long as I will specify that the video is sourced from BBC newsnight.
In fiecare an HCV ucide peste 500000 oameni.Medicamentele generice pentru hepatita C functioneaza. Nu deveni statistica! Cauta pe Google “medicamente generice pentru hepatita C”.
HCV kills more than 500000 people every year. HCV generic drugs work. Don’t become a statistic.
By sharing this Youtube video you might save someone’s life!
My TX: HEPCVIR-L[generic Harvoni]-India
SVR52 achieved20 June 2016 at 5:17 pm #19560Maybe the “it’s better to seek forgiveness than permission” strategy is the most appropriate here. Meaning if the Gods of Youtube don’t like it they’ll take it down.
But I don’t know if they could come after you legally…..
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 baby21 June 2016 at 7:34 am #19626the video material with the Romanian subtitle has been published.
The location is here:I hope it will stay there and will not be removed….
Cheers
RHF
In fiecare an HCV ucide peste 500000 oameni.Medicamentele generice pentru hepatita C functioneaza. Nu deveni statistica! Cauta pe Google “medicamente generice pentru hepatita C”.
HCV kills more than 500000 people every year. HCV generic drugs work. Don’t become a statistic.
By sharing this Youtube video you might save someone’s life!
My TX: HEPCVIR-L[generic Harvoni]-India
SVR52 achieved21 June 2016 at 7:43 am #19628Great work Rohcv! I’m not a lawyer yet, law student, so don’t trust me either but by the looks of it the worst that can happen is it will get taken down if someone notices. It must happen constantly. We must have all watched heaps of copyrighted stuff that survives.
I will send the link to Sean Reddin who is in it, he will be so pleased that you have done this!
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
21 June 2016 at 7:53 am #19629Hi Hazel,
thank you very much for your message. I’ve been reading the youtube terms again, still not clear.
But, I’ve seen that on Youtube some other channels have been taken over the video material so I thought that it should be ok to publish as long as it is not for a commercial purpose.
In order to make sure no other copyright issues will arise, I preferred to add some more information (who published it, the original location of the video material and a kind of small disclaimer related to the quality of work) in both languages, Romanian and English.
I hope BBC will not have anything against this….Cheers
RHF
In fiecare an HCV ucide peste 500000 oameni.Medicamentele generice pentru hepatita C functioneaza. Nu deveni statistica! Cauta pe Google “medicamente generice pentru hepatita C”.
HCV kills more than 500000 people every year. HCV generic drugs work. Don’t become a statistic.
By sharing this Youtube video you might save someone’s life!
My TX: HEPCVIR-L[generic Harvoni]-India
SVR52 achieved21 June 2016 at 12:06 pm #19634A big thanks RHF for all of your hard work in translating this video and getting it online. Hopefully it will be seen by the people who need to hear it in Romania.
I saw it a while ago and it makes some great points. Sean’s reaction still brought a tear to my eye and
Virginia’s spiel at the end still put my teeth on edge.Yes Virginia there is a Santa Clause or at least a way to provide low cost treatment to the millions of people who need it without the billion dollar price tag.
Multumire!
24 June 2016 at 7:04 pm #19885Greedfighter wrote:No AL, simply pointing out that she sounds American. I thought she was a government official.
I did a little searching, and found out that the organization she represents is not affiliated directly with the government. It’s a pharma trade organization, and she was an executive at Amgen and Pfizer before taking this role.
So I revised my previous comments.
Thanks for revising your comments.
In any case, an interesting video, except that the narrator describes HCV as being “highly contagious”, which unfortunately is completely wrong. Her misrepresentation of this point severely undermines the credibility of the rest of her story, which is a shame, as she had the chance to educate the public rather than spread misinformation.
G4, F4, cirrhosis.
Thank you to Gilead, Michael Sofia, and the terrific folk at FixHepC for making this adventure possible.
YEAR….. ALT….. AST….. GGT… FERRITIN………………………………….
2009……. 210….. 215….. 953….. 1400……….. (Bad health, stupidity)
2015……. 60……. 45……. 150….. 360…………. (Improved diet and health, FixHepC treatment)
2016……. 20……. 24……. 25……. 156…………. (SVR 12)25 June 2016 at 12:08 am #19887Hey, what can I say? Modern media likes to sensationalise everything.
While I agree that in an ideal world more precise language by the presenter may have been educationally helpful, after reviewing I wonder if that was not a deliberate ploy to keep the viewer attention focussed in a field where most people have little knowledge or often interest.
By the way, your statement that she is “completely wrong” in your attempt at dismissal is just you falling into a similar trap to her, assuming her words were not deliberately chosen. Here is the Oxford dictionary definition of contagious:Definition of contagious in English:
contagious
Pronunciation: /kənˈteɪdʒəs/
ADJECTIVE1(Of a disease) spread from one person or organism to another, typically by direct contact:
And general ‘googly’ type definition:
contagious
kənˈteɪdʒəs/
adjective
1.
(of a disease) spread from one person or organism to another, typically by direct contact.
“a contagious disease”
synonyms: infectious, communicable, transmittable, transmissible, transferable, spreadable; MoreSo her use of the qualifying word “highly” could mean that it is an infectious disease almost exclusively spread by contact, in this case blood to blood contact. Of course if she had used “very” to qualify then she would have been wrong.
English is such an imprecise language.
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
25 June 2016 at 3:26 am #19891AL, I revised my comments as the woman is not a government official. She is a corporate shill. I guarantee her next job will be a senior position at a pharma company, reward for a job well done.
She’s not corrupt only because she plays for the greed team. I can’t call her a tiger if the team uniform is orange and black stripes.
She’s not corrupt; she is a piece of shit.
If you listen to her, I can’t help but want to kick her in the mouth, however she is not corrupt, since she represents the pharma manufacturers, who are delighted by high prices at the expense of human life. Yay team!
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