Home Forums Main Forum Patient Stories Threads best left unread, containing things better left unsaid BBC Newsnight – mostly talk about media representation & greed

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  • #18921
    Avatar photoGreedfighter
    • Guardian Angel
    • ★★★★★
    @greedfighter

    Great video. Reinforces that in many countries (including USA, Great Britain and many others) if you are willing to spend your own money, treatment is available for under $2000 USD.

    #18922
    Avatar photobeaches
    • Guardian Angel
    • ★★★★★
    @beaches
    Greedfighter wrote:

    Great video. Reinforces that in many countries (including USA, Great Britain and many others) if you are willing to spend your own money, treatment is available for under $2000 USD.

    Great video except for the puppet at the end
    Thanks for posting


    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

    #18923
    Avatar photoGreedfighter
    • Guardian Angel
    • ★★★★★
    @greedfighter

    Yes beaches, I agree. She sounds like an American!

    #18928
    Avatar photorohcvfighter
    • Guardian Angel
    • ★★★★★
    @rohcvfighter

    @beaches: I think nowadays it is a MUST for the news makers, TV channels, etc. to include such puppets in order to show or better say, defend their position of neutrality and allow the people to choose whatever version they consider as being true.
    ——–
    On the other side, the message was quite clear: there exist affordable HCV medication and if you want to take it and you can do it, just think on what the puppet said at the end and make sure you take it from a trusted source :). So the role of the puppet was to make one think twice, MHO, but not to give up.

    I loved this video, thank you for sharing it.


    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 achieved

    #18934
    A.L.
    • Topics: 3
    • Replies: 61
    • Total: 64
    • Recovery Champion
    • ★★★★
    @a-l
    Greedfighter wrote:

    Yes beaches, I agree. It’s very interesting, I listened to her again, she is an American! How is it that she is on a British pharmaceutical committee? What a corrupt world we live in.

    Two points – having an accent or American heritage does not exclude you from being British.
    – Even if she were an American, there is such a thing called freedom of labour movement.

    For you, it is unacceptable that an American or a person of that heritage can work in Britain? That it follows that the world is therefore corrupt?

    Thank you for so definitively demonstrating what reflexive bigotry looks like. Well done.


    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)

    #18935
    Avatar photoGreedfighter
    • Guardian Angel
    • ★★★★★
    @greedfighter

    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.

    #18938
    Avatar photomgalbrai
    • Guardian Angel
    • ★★★★★
    @mgalbrai

    Pigeons or Statues?
    Take your pick.


    Curehcvnow@gmail.com
    http://forums.delphiforums.com/generichcvtx

    G 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

    #18939
    Avatar photofitz
    • Guardian Angel
    • ★★★★★
    @fitz

    The accent sounds like Maryland, or Virginia (DC area), but she’s obviously been in the UK long enough to pick up a fair amount of UK inflection. My guess – a former DC ‘fed’ of some type, now working internationally for big pharma.

    Not uncommon at all for govt. officials, especially mid to high level officials to ‘retire’ to, or go over to corporate jobs in the private sector where they earn a lot more money. Not saying that is who she is. It is just a best guess.

    #18946
    Avatar photoVororo
    • Guardian Angel
    • ★★★★★
    @vororo

    For those people who are new to FixHepC, there is an old thread on this that was started by LG back in February.

    https://fixhepc.com/forum/media-news/720-tonights-newsnight-uk-feature-meds-access-generics.html?limitstart=0

    To my (British) ears, Virginia Acha sounds like a Brit who has spent many years in the USA (her CV is available on LinkedIn).

    Either way, Brit or American, she is speaking as Executive Director of the Association of British Pharmaceutical Industry, and to my (British) ears she talks like she is representing Big Pharma:

    Ewan Davis: “We know that drug companies have to be recompensed for the billions they spend on research and development. Do you think there should be any limit on the price they should be allowed to charge?”

    Virginia Acha: I think we are focusing a lot on price and what I didn’t hear at all was the value that we’re getting through the way these medicines are being introduced in healthcare, and when NICE gives an approval, that’s not just a tick because we think its just a curative treatment, that’s because they’ve looked at does it make sense to spend the British [tax] payers pound on this medicine as opposed to any other intervention that we could do to really care for them…”

    Dead right Virginia. I didn’t hear anything about that either. Just in case you didn’t understand it Virginia, the story was about how Sean Reading had to go to FixHepC because the treatment was too expensive for the Irish health service to be able to treat him. So he got himself treated with perfectly effective generics instead. I hope you will take this into account, Virginia, the next time you talk about “negotiating value” with the NHS.

    Brit or American, corporate BS is always the same (grrrr)…


    Diagnosed Jan 2015: GT3, A0+F0/F1. Fatigue + Brain-Fog.
    Started Sof+Dac from fixHepC 10-Nov-2015. NO sides.
    Pre-Tx: AST 82, ALT 133, Viral Load 1 900 000.
    Week4: AST 47, ALT 58. VL < 15 (unquantifiable). Week12 (EOT): AST 30, ALT 26, VL UND Week16 (EOT+4): AST 32, ALT 28, GGT 24, VL UND Week28 (EOT+16): AST 26, ALT 22, GGT 24, VL UND Ever grateful to Dr James. Relapsed somewhere after all that... Bummer! Jan 2018: VL 63 000 (still GT3).

    #18947
    rememberdecember
    • Topics: 1
    • Replies: 17
    • Total: 18
    • Acolyte
    • ★★
    @rememberdecember

    Great video. Loved the first half of it.

    But that silly jargon-speak woman at the end. She’s totally lying: if she had HCV and wasn’t being offered treatment, of course, she would go the generic route.

    It’s fine for her to say that the National Institute of Clinical excellence has approved these drugs in the UK. It did that on the 1st of March, but the problem we have is that NHS England – who have the ultimate control of the purse strings – have placed a monthly cap on what each hospital can spend on DAAs, which effectively means that the NHS has to ration these drugs and give them to the most needy (i.e. people with cirrhosis) first, and everyone else has to wait until each hospital has worked its way through those patients before they can be treated….

    …and in that time – which could take a couple of years in the busier hospitals – everyone else with HCV is getting sicker; to the extent that a significant proportion of these people will be unable to work and thus place a greater cost burden on the taxpayer through a llfe time of benefits than the cost of treatment of treating them now would do.

    Short term thinking. Don’t wait, is what I say.


    45 yo male; UK; HCV since 1996; G4; F2-3 (fibroscan score 9.1);
    Null responder interferon/ribavirin 2008;
    4/16 Harvoni 8 weeks; Pre-tx VL 2.1 million; week 4 VL 269; EOT UND; but…
    6/16 Tx extended w/ generic sof/dac x 12 weeks due to concerns around my slow response to Harvoni. UND at end of 2nd round of treatment and EOT+4.

    #18955
    Avatar photoAriel
    • Guardian Angel
    • ★★★★★
    @ariel

    Yup
    TREAT NOW
    :+1:

    #18959
    Avatar photobeaches
    • Guardian Angel
    • ★★★★★
    @beaches
    A.L. wrote:

    Two points – having an accent or American heritage does not exclude you from being British.
    – Even if she were an American, there is such a thing called freedom of labour movement.

    For you, it is unacceptable that an American or a person of that heritage can work in Britain? That it follows that the world is therefore corrupt?

    Thank you for so definitively demonstrating what reflexive bigotry looks like. Well done.

    Hello A L
    I am struggling to understand how you can think that comment shows bigotry.
    I just listened to the woman at the end of this clip and she is being very careful to be neutral. The talk about value vs price is quite frankly insulting to anyone with HepC and to anyone capable of thinking critically.
    Her comments about the price the British Govt is paying for the DAAs and the deal they have negotiated mean nothing at all, firstly because she is not committing to them and just generalising, and secondly because they are probably not true. I know the Australian Govt paid just under $AUD70,000 for my treatment, and if the Govt thinks they got a good deal they weren’t trying very hard.
    Another thing… Anyone who talks about Gilead developing Harvoni is either misinformed or lying. Gilead did not develop it. They had a choice of 3 products to buy and I guess they won Lotto when they picked Harvoni. They have made their money back many times over.
    And as for an American being a spokesperson, for an American to be Executive Director of the Association of British Pharmaceutical Industry (a public service) and then to publicly plug big pharma…. if you call that bigotry you are welcome to your opinion but so am I and my opinion is that you are misinformed or missing the point.


    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

    #18960
    Avatar photofitz
    • Guardian Angel
    • ★★★★★
    @fitz

    Corporate mercenaries know no allegiance to anything but the bottom line.

    It doesn’t matter what language they speak, or what accent slithers off their forked tongues. The attorneys write the corporate talking points, the public relations types polish up the turd for public consumption, and the corporate mouthpiece delivers it with perfect diction.

    #18999
    Avatar photoklhilde
    • Guardian Angel
    • ★★★★★
    @klhilde

    Gil’s Tire: “Well certainly sir, I can get your tire fixed in twelve minutes … just go ahead and write me a check for twenty thousand dollars.”

    Fly Guy: “$20,000! That’s insane!”

    Gil: “No sir …. it’s the middle of the night. Go ahead and try, none of the other repair guys will even answer their phone this late.”

    Fly: “It’s just a tire!”

    Gil: “Oh no sir, you’ve already explained to me that if this tire doesn’t get fixed quickly you’ll miss your flight. And you’ve said that if you miss that flight you’ll miss your contract signing and you won’t make the sale. You’ll personally be out $25,000. That being the case I think it’s entirely reasonable that I charge you $20,000 for the service. After all, I’m saving you $5000.”

    Fly: “It’s just a tire, you do this all the time and $20,000 is a totally unreasonable amount of money.”

    Gil: “I think we are focusing a lot on price and what I didn’t hear at all was the value that you’re getting through the way I’m enabling you to save your deal. Now you can make out the check and we’ll get this done … write it to me personally …. My name is Gilead.”

    #19011
    Avatar photobeaches
    • Guardian Angel
    • ★★★★★
    @beaches

    Fly Guy: “Screw you, I’ll take a cab. Oh and I’ll tell everyone I know what a greedy POS you are.”


    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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