Another success story for Darvoni from Bangladesh

This topic has 3 replies, 3 voices, and was last updated 7 years, 8 months ago by Vororo.

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2 March 2017 at 10:48 pm #25455
Vororo
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- Guardian Angel
@vororo
From the BBC (01-March-2017):

“The Hepatitis C Trust has taken £200,000 in grant funding from US drugs giant Gilead since 2014. Last year, it unsuccessfully took NHS England to court for restricting access to the medicine on cost grounds. The charity denied being influenced by the drugs industry. It said it had always acted in the interests of patients.”

Meanwhile, here is another example of someone in the UK who was successfully treated themselves with generics from Bangladesh:

http://www.bbc.com/news/health-39103389

Hat’s off to Zoe Sharam for standing up and telling her story!

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).
3 March 2017 at 5:03 am #25463
Dr James
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- Guardian Angel
@fixhepc
It’s worth remembering that the Hepatitis Trust in the UK does have a generics page (and indeed was amongst the first to have one)

http://www.hepctrust.org.uk/information/treatment/buying-hepatitis-c-drugs-online

And their CEO Charles Gore treated with PEG/Riba back in the bad old days:

http://www.worldhepatitisalliance.org/story/2015-04/charles-gore

So although taking money from pharma introduces the question of what impact it may have had, the trust seems to have been navigating an honourable path.

YMMV
3 March 2017 at 10:48 am #25479
LondonGirl
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@londongirl
They took their time to come around, thankfully cautious support is now available for generic meds, but I’m not sure they’re totally up do date on the detail. I do believe their association with their sponsors has restricted them in the past. I felt their court case wouldn’t go anywhere, patients money paid for it.

However, there are some good, kind people volunteering there, most ex patients themselves, just not sure they’re totally in the loop and certainly not so informed as this wonderful place.

I called them once and they advised me to wait on NICE etc, so glad I didn’t follow their advise

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
3 March 2017 at 11:43 pm #25490
Vororo
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@vororo
”James-Freeman-facebook” wrote:

It’s worth remembering that the Hepatitis Trust in the UK does have a generics page (and indeed was amongst the first to have one)

http://www.hepctrust.org.uk/information/treatment/buying-hepatitis-c-drugs-online

And their CEO Charles Gore treated with PEG/Riba back in the bad old days:

http://www.worldhepatitisalliance.org/story/2015-04/charles-gore

So although taking money from pharma introduces the question of what impact it may have had, the trust seems to have been navigating an honourable path.

Yes, I was not questioning whether the Hepatitis C Trust were acting honourably or not. I think they did the right thing, and especially if the court case was crowd-funded. Since the Trust could not take Gilead to court, they had no choice but to go after the NHS. Even though they lost the case, it still served to get the issue onto the TV and into peoples living rooms.

Most importantly, the case led to a BBC TV program which says that it is legal for individuals to import personal medication to the UK – and that Darvoni from Bangladesh works!

Here’s a link to the full report that was shown on BBC 2.

http://www.bbc.co.uk/programmes/p04vdlgh

Let’s hope this give more people the confidence to just go and do it themselves as well!

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).
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