TOPIC:

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:

www.bbc.com/news/health-39103389

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

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)

www.hepctrust.org.uk/information/treatme...titis-c-drugs-online

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

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.

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

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)

www.hepctrust.org.uk/information/treatme...titis-c-drugs-online

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

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.

www.bbc.co.uk/programmes/p04vdlgh

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