Home Forums Main Forum Media & News Tonights Newsnight UK Feature Meds, Access, Generics

Viewing 15 posts - 1 through 15 (of 23 total)
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  • #12121
    Avatar photoLondonGirl
    • Guardian Angel
    • ★★★★★
    @londongirl

    Know anyone with #hepatitis c? Feature on #Newsnight tonight from me & @Studio9films about pricing of and access to new treatments.

    A couple of online activist, film-making & medic friends involved, Fingers crossed it will go ahead & won’t be pulled for bigger news, it’s quite an achievement.

    BBC 2 Tonight – 10.30 pm

    http://www.bbc.co.uk/programmes/b006mk25

    ps Trying to share this in the hope that someone untreated will go for it, our way, please share if you know anyone waiting for meds and considering generics

    Outside the UK you can watch it here:

    [video]https://www.youtube.com/watch?v=lgjJNTx3vvY[/video]


    GT1a Dec14 F2/8.7 VL 900000-2.5M
    Jan16 Hepcivir-L MonkMed/Redemption
    Baseline: VL 913575 Alt 76 Platelets low
    Wk2 VL1157 Alt 23
    DET Wk 8 VL 32 Alt19 ‘In the slow lane’
    June16 Fibro 5.7 F0/1 LIF 1.5
    Wk 11 VL<12 Alt 13 Det/Unq
    Extending tx 12 wks Mylan Sofo/Dac MonkMed
    Wk 14 VL <12 Det/Unq
    Wk 16 VL UNDETECTED
    Wk 22 + 4 Wks Sunprevir FixHepC
    Wk 24 UNDETECTED Alt 13
    Wk 12 post tx SVR12 Wk 26 SVR24
    Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC

    #12130
    Avatar photoLondonGirl
    • Guardian Angel
    • ★★★★★
    @londongirl

    íHmmm it seems like Newsnight may be possibly shortening the feature a little and added an ‘alternative’ view as the final say at a late hour, I wonder who that could possibly be ?

    Meanwhile, a reminder of todays Times article :
    http://www.thetimes.co.uk/tto/health/news/article4692556.ece


    GT1a Dec14 F2/8.7 VL 900000-2.5M
    Jan16 Hepcivir-L MonkMed/Redemption
    Baseline: VL 913575 Alt 76 Platelets low
    Wk2 VL1157 Alt 23
    DET Wk 8 VL 32 Alt19 ‘In the slow lane’
    June16 Fibro 5.7 F0/1 LIF 1.5
    Wk 11 VL<12 Alt 13 Det/Unq
    Extending tx 12 wks Mylan Sofo/Dac MonkMed
    Wk 14 VL <12 Det/Unq
    Wk 16 VL UNDETECTED
    Wk 22 + 4 Wks Sunprevir FixHepC
    Wk 24 UNDETECTED Alt 13
    Wk 12 post tx SVR12 Wk 26 SVR24
    Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC

    #12131
    Avatar photoChapel
    • Guardian Angel
    • ★★★★★
    @chapel

    I am keen to see this but the BBC blocks access to iplayer video outside the UK (I’m in NZ) and somehow blocks even proxies/VPNs from working properly. Has anyone found a way? The url is http://www.bbc.co.uk/programmes/b006mk25
    Or maybe someone could record it and make it available here??


    M, 57, Live in Wellington,NZ.
    Genotype 1a diagnosed in 2013.
    Treating for the first time since October 31 with Buyers Club Sof/Led. Thanks so much guys. Minimal side effects apart from sore throat at the start..
    Viral load 5.4m when treatment started, Undetected at 4 weeks, 8 weeks, End of Treatment and 12-weeks post EOT. Yay!

    #12136
    Avatar photoLondonGirl
    • Guardian Angel
    • ★★★★★
    @londongirl

    It was a brilliant report. Really excellent. Newsnight brought on a woman at the end from the pharmacutical world and she sounded pretty weak and incredibly corporate in comparisson. Dr Freeman got a mention and plenty of time given to all we value – A fantastic job by Kate Brown. I hope it helps some of those ‘sitting on the fence’ to decide rather than risk their health further.


    GT1a Dec14 F2/8.7 VL 900000-2.5M
    Jan16 Hepcivir-L MonkMed/Redemption
    Baseline: VL 913575 Alt 76 Platelets low
    Wk2 VL1157 Alt 23
    DET Wk 8 VL 32 Alt19 ‘In the slow lane’
    June16 Fibro 5.7 F0/1 LIF 1.5
    Wk 11 VL<12 Alt 13 Det/Unq
    Extending tx 12 wks Mylan Sofo/Dac MonkMed
    Wk 14 VL <12 Det/Unq
    Wk 16 VL UNDETECTED
    Wk 22 + 4 Wks Sunprevir FixHepC
    Wk 24 UNDETECTED Alt 13
    Wk 12 post tx SVR12 Wk 26 SVR24
    Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC

    #12137
    Avatar photoSirchinenge
    • Guardian Angel
    • ★★★★★
    @sirchinenge

    Em, BBC does not block UK VPNS I’ve used them for years am not sure why you’re being
    blocked!


    Sob/Dac from Oct 29 2015
    Geno 1b
    Fiberscan 9.9 Pre treatment
    Fiberscan 7.4 week 10
    VL 1.3 million pre treatment
    Week 2.5 VL 96
    Week 5.5 VL 17
    Week 10 VL UD
    SVR 3 UD
    SVR 16 UD
    Cured:
    All liver functions in normal ranges.

    #12138
    Avatar photodointime
    • Guardian Angel
    • ★★★★★
    @dointime

    So the time has come. FixhepC on the Beeb. Can’t get any more mainstream than that. Anybody who doesn’t know about it now must be wearing an eyemask and ear muffs. Cheaper drugs in India were also mentioned, actually whispered about quickly in passing.

    That bitch at the end, Virginia Acha of the Association of the British Pharmaceutical Industry actually had the gall to say that if she had hepC she would get her drugs via the proper NHS sources only, because she “knows what can happen” via less legitimate sources. Which proved to me right there that she had no clue what she was talking about. I’d like to see her with her liver rotting away waiting for the NHS to come across with the meds, swooning at talk of the buyers club. Oh yeah? I think not.

    Well, that was a big day, that was.
    dt

    #12140
    Avatar photodointime
    • Guardian Angel
    • ★★★★★
    @dointime

    …………Or maybe the lovely Virginia was just smiling for the cameras and lying through her teeth. (Sigh)
    You couldn’t be in the pharmaceutical industry and be that clueless, could you.
    dt

    #12141
    Avatar photoLondonGirl
    • Guardian Angel
    • ★★★★★
    @londongirl

    Cheaper drugs in India were also mentioned, actually whispered about quickly in passing.

    Really? Patient was clutching his bottles throught his interview and mentioned ‘talking to a physician in Australia who tested the meds saying they could be accessed much more cheaply’ ? Don’t think they’d actually be allowed to blatantly advertise a such? Clever move having the patient talking to his own Dr and hearing he was SVR 12 (edit sorry UND at EOT thx dt) was an excellent call. Also thought Dr Andrew Hill excellent with his nice calm Dr demeanour stating that we won’t be able to rid the world of HCC at this cost.
    Agree with you re Virginia Archer, a non biased person watched it with me and said she came across as totally weak after the previous feature. Pity they put her on at the end though.

    It’s the best report we’ve had yet :-)


    GT1a Dec14 F2/8.7 VL 900000-2.5M
    Jan16 Hepcivir-L MonkMed/Redemption
    Baseline: VL 913575 Alt 76 Platelets low
    Wk2 VL1157 Alt 23
    DET Wk 8 VL 32 Alt19 ‘In the slow lane’
    June16 Fibro 5.7 F0/1 LIF 1.5
    Wk 11 VL<12 Alt 13 Det/Unq
    Extending tx 12 wks Mylan Sofo/Dac MonkMed
    Wk 14 VL <12 Det/Unq
    Wk 16 VL UNDETECTED
    Wk 22 + 4 Wks Sunprevir FixHepC
    Wk 24 UNDETECTED Alt 13
    Wk 12 post tx SVR12 Wk 26 SVR24
    Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC

    #12142
    Thurl
    • Topics: 4
    • Replies: 20
    • Total: 24
    • Treatment Warrior
    • ★★★
    @thurl

    Good to see Dr James Freeman and the Fix Hep C Buyers Club get a mention on the BBC. It could well encourage more hepatitis c sufferers in the UK to access generics from abroad. Interesting that Gilead bottled out of the chance to put a representative on the programme to defend their pricing policy.

    Dr Andrew Hill from Liverpool University put the question effectively: why is a course of medicine that is, to use his words, “fundamentally cheap”, costing £100 to produce, being sold to the very hard-pressed UK National Health Service at a list price of £35,000.

    Virginia Acha, the representative from the Association of the British Pharmaceutical Industry failed, IMHO, to convincingly answer either of the two most pertinent questions put to her by the programme presenter, namely: wouldn’t it help prevent this kind of high pricing if the length of time of the monopoly granted by a pharmaceutical patent was reduced; and, secondly, if she had hepatitis c, and couldn’t access treatment on the NHS because of its high price, wouldn’t she join a buyers’ club to access patent-free drugs from abroad?


    Male Geno 1a F3-4 Tx Naive
    Contracted early 1970s Diagnosed 2012
    Started 12 wks TWINVIR (Sof/Led) on 15 Nov 2015
    Pre-treatment VL 1.8 million
    UND at 8 Dec 2015; UND at 12 Jan 2016
    Ended 12 wks TWINVIR on 6 Feb 2016
    9 Feb 2016 EOT VL test <15 PCR Negative
    UND at 3 May 2016 SVR12

    #12143
    Avatar photoChapel
    • Guardian Angel
    • ★★★★★
    @chapel

    A great report, I managed to watch it using Hola VPN.


    M, 57, Live in Wellington,NZ.
    Genotype 1a diagnosed in 2013.
    Treating for the first time since October 31 with Buyers Club Sof/Led. Thanks so much guys. Minimal side effects apart from sore throat at the start..
    Viral load 5.4m when treatment started, Undetected at 4 weeks, 8 weeks, End of Treatment and 12-weeks post EOT. Yay!

    #12144
    Avatar photoLondonGirl
    • Guardian Angel
    • ★★★★★
    @londongirl

    :+1:


    GT1a Dec14 F2/8.7 VL 900000-2.5M
    Jan16 Hepcivir-L MonkMed/Redemption
    Baseline: VL 913575 Alt 76 Platelets low
    Wk2 VL1157 Alt 23
    DET Wk 8 VL 32 Alt19 ‘In the slow lane’
    June16 Fibro 5.7 F0/1 LIF 1.5
    Wk 11 VL<12 Alt 13 Det/Unq
    Extending tx 12 wks Mylan Sofo/Dac MonkMed
    Wk 14 VL <12 Det/Unq
    Wk 16 VL UNDETECTED
    Wk 22 + 4 Wks Sunprevir FixHepC
    Wk 24 UNDETECTED Alt 13
    Wk 12 post tx SVR12 Wk 26 SVR24
    Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC

    #12145
    Avatar photodointime
    • Guardian Angel
    • ★★★★★
    @dointime

    LG – I meant the woman who was on before that patient with the bottles, just mentioning India.
    Also, I don’t think that was an SVR12 report I think it was an EOT report, but who’s quibbling it was a good call.

    #12146
    Avatar photoLondonGirl
    • Guardian Angel
    • ★★★★★
    @londongirl

    Dr Andrew Hill from Liverpool University put the question effectively: why is a course of medicine that is, to use his words, “fundamentally cheap”, costing £100 to produce, being sold to the very hard-pressed UK National Health Service at a list price of £35,000.

    Yep. I thought all angles were covered. How HepC affects the patients., how some are accessing and the possibilities for those that haven’t yet. A Drs incredulous view of the price charged to a struggling NHS and pharmacuticals response (the weakest link I feel).

    The presenter actually laughed at Virginia Acha denying she would access medicines abroad if she was in the same boat and she came across as if she was in a team leader corporate meeting orvsomething and totally lacking empathy.

    I wanted to hug the three patients :-)

    Great job Kate Brown.


    GT1a Dec14 F2/8.7 VL 900000-2.5M
    Jan16 Hepcivir-L MonkMed/Redemption
    Baseline: VL 913575 Alt 76 Platelets low
    Wk2 VL1157 Alt 23
    DET Wk 8 VL 32 Alt19 ‘In the slow lane’
    June16 Fibro 5.7 F0/1 LIF 1.5
    Wk 11 VL<12 Alt 13 Det/Unq
    Extending tx 12 wks Mylan Sofo/Dac MonkMed
    Wk 14 VL <12 Det/Unq
    Wk 16 VL UNDETECTED
    Wk 22 + 4 Wks Sunprevir FixHepC
    Wk 24 UNDETECTED Alt 13
    Wk 12 post tx SVR12 Wk 26 SVR24
    Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC

    #12161
    Avatar photoChapel
    • Guardian Angel
    • ★★★★★
    @chapel

    For those who haven’t seen the report yet:
    https://www.youtube.com/watch?v=lgjJNTx3vvY


    M, 57, Live in Wellington,NZ.
    Genotype 1a diagnosed in 2013.
    Treating for the first time since October 31 with Buyers Club Sof/Led. Thanks so much guys. Minimal side effects apart from sore throat at the start..
    Viral load 5.4m when treatment started, Undetected at 4 weeks, 8 weeks, End of Treatment and 12-weeks post EOT. Yay!

    #12163
    Avatar photoTina-Hill-facebook
    • Guardian Angel
    • ★★★★★
    @tina-hill-facebook

    Man that was awesome!

    Dr Andrew Hill and the patients stole the show.


    SVR 24

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