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Tonights Newsnight UK Feature Meds, Access, Generics 6 years 9 months ago #11079

  • LondonGirl
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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

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:

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
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Last edit: by DrJames. Reason: Added youtube link

Tonights Newsnight UK Feature Meds, Access, Generics 6 years 9 months ago #11088

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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 :
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
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Last edit: by LondonGirl.

Tonights Newsnight UK Feature Meds, Access, Generics 6 years 9 months ago #11089

  • Chapel
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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 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!
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Tonights Newsnight UK Feature Meds, Access, Generics 6 years 9 months ago #11094

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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
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Last edit: by LondonGirl.

Tonights Newsnight UK Feature Meds, Access, Generics 6 years 9 months ago #11095

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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.

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Tonights Newsnight UK Feature Meds, Access, Generics 6 years 9 months ago #11096

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
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Last edit: by dointime.

Tonights Newsnight UK Feature Meds, Access, Generics 6 years 9 months ago #11098

............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

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Last edit: by dointime.

Tonights Newsnight UK Feature Meds, Access, Generics 6 years 9 months ago #11099

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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

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Last edit: by LondonGirl.

Tonights Newsnight UK Feature Meds, Access, Generics 6 years 9 months ago #11100

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
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Tonights Newsnight UK Feature Meds, Access, Generics 6 years 9 months ago #11101

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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!

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Tonights Newsnight UK Feature Meds, Access, Generics 6 years 9 months ago #11102

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:+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

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Tonights Newsnight UK Feature Meds, Access, Generics 6 years 9 months ago #11103

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.
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Tonights Newsnight UK Feature Meds, Access, Generics 6 years 9 months ago #11104

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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
The following user(s) said Thank You: pat1

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Tonights Newsnight UK Feature Meds, Access, Generics 6 years 9 months ago #11119

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For those who haven't seen the report yet:
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!
The following user(s) said Thank You: DrJames, dointime, Joy, LondonGirl, coral, Vororo, Gaj, Tina-Hill-facebook, re_roll

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Tonights Newsnight UK Feature Meds, Access, Generics 6 years 9 months ago #11121

Man that was awesome!

Dr Andrew Hill and the patients stole the show.
SVR 24
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