TOPIC:

Thanks Mike,

... But a PhD thesis takes 3 years to write, and then no-one reads it

I was thinking more along the lines that for each of us who wants to do something, we could try to pick off and answer one of those questions ourselves. Or just track relevant business and health sources in a systematic way and post quick summaries and links here. Lots of people are already doing this. But they end up getting scattered across the forum.

For my part, one of the things that is really bugging me at the moment is who is behind all these so-called Hep-C "support" forums, and how they are funded. I have a hunch that > 90% are funded by Big Pharma but I want to shift that from a hunch to hard facts.

Another burning question, probably more important but harder to answer just by searching on-line, is just what are the numbers? How many people get turned away each year because of the extortionate price of the treatment?

Best,

Hey V,
Headed to the doc now to get my "official" 4 week lab results. When I return, I will pick an area to pursue. As far as denials of treatment based on price: given that HCV has been proven to be a potentially life-threatening disease and there is a proven, extremely effective "cure" available, I would argue that every denial was cost based.
Mike

Yeah, we gotta keep socking the B*rds with the facts.

All The Best for your own Week-Four Facts!

Vororo.

Thanks V. All good questions.

"The main problem with hepatitis C today is the price of treatment set by Gilead, coupled with the fact that they have managed to secure a near-global monopoly through crafty licensing deals and market segmentation."

I think the main problem, and not just for today, is that Gilead have set a precedent and gotten away with it. Do you really think that this crap stops with Gilead? I don't see other companies advertising that their new drugs are going to be half the price. I hope the future proves me wrong.

What has happened is due to systemic failure of all the parties. Gilead just happen to be at the sharp end right now. The government is at the base and there are many other moving parts in the middle. I don't advocate a root and branch clearout, and I'm not clever enough to figure out what "tweaks" are needed to turn this around, but I do think that pointing the finger just at Gilead is not going to cut it. The Gilead monster didn't just happen on its own. It is the tip of the iceberg. It was spawned by a whole system that made it virtually inevitable that this would happen sooner or later.

Geez, when I started this I really didn't expect this concept to be so roundly rejected, it seemed so self-evident to me. I've been scared of the virus, I've been scared of ordering the gererics, but I'm more scared now because if you guys don't get it then nobody will. Which means that it's a done deal for all the Gileads of the future, and that future looks even more bleak.

dt

Hi dointime,

Sure, I agree, its not just Gilead. It has been going on for years. Take tamiflu for example (oops, there's another famous Gilead production). Tamiflu (generic name olsetamivir) has made Merck about $18 billion since 1999, of which about $2 billion went to Gilead in royalties. It was stock-piled by the US and many european governments, and each year doctors still prescribe it and many families buy it each winter.

www.bmj.com/content/348/bmj.g2524

But a thorough review by the Chochrane Group concludes that it saves only about half a day's worth of symptoms, and then only if it is taken in time:

community.cochrane.org/features/tamiflu-...ull-evidence-picture
community.cochrane.org/features/tamiflu-...w-effective-are-they

So I totally agree, there is something terribly wrong when Big Pharma can get away with this kind of thing...

Even worse, today with Hepatitis C, everything has gone up a gear....

I am sorry if you think "we don't get it" (I suppose you mean me and Mike and Miko3 and GAJ). I think we all get it. The question is what to do about it?

Me, I don't claim to have a solution. But we have to start somewhere and we all have to do our bit. And every bit counts.

Even if we don't agree on what to do about it, I still want to thank you for really opening this thing up.

Lets never give up on this!

Vororo.

Well, right now, we are being forced to react. It it working to some extent. We can keep running an "end around" until the other team decides to focus on stopping it. Then we can adjust. The Vietnamese strategy of the elephant and the tiger. It worked then and it will work now.
We will win in the end, but it will be costly. People will die.
Mike

Yes, right! I am sure Dr James is still pushing forward. The rest of us can help by collecting little bits of ammunition in the background.

Thank you Vororo, your posts here have been very well put.

I suspect that multinational companies such as Gilead are outside the control or influence of any individual or national government, however I do know that they are adverse to bad publicity especially when it is ongoing and from multiple directions. Probably not because of any moral embarrassment but because it tends to undermine investor confidence.
There is a lot of injustice in the world but this site is about helping people with Hep C. There are at least 150 million world wide with this virus of whom at least half a million per year die from its effects. There is currently one drug that (when used with others) offers promise to all those people and this drug is Sofosbuvir. This drug and its pricing is largely under the control of Gilead who have chosen to take the low road of maximum profit (obscenely so) ahead of the health, wellbeing and lifespan of those with the virus.

So, yeah, I'm happy to contribute to anything that can embarrass Gilead into reviewing their policy on pricing of Sofosbuvir. Change has to start somewhere and initial focus in one area is a proven method to success.

G

I think i get what your saying Dt, they are assholes, collectively, corporately and as individual cogs in their corporate machine doing what evils they do, they sure as hell bear a lot of responsibility for this crap. Like the assholes who walked away with billions from the various world governments who bailed out their bad bets after they crashed the economies.
Remember the 60 minutes expose where the health insurance exec went rogue and ratted out the owners of the health ins corps for eating exotic delicacies on solid gold dinnerware as they flew over the bedraggled 'flyover' areas with people lining up in pig farms in the US to get basic dental care? WTF?? They get no sympathy from me, but from what i hear they have built private bunkers and islands to hide out on in case the masses wake up and come after them. I think i heard some are planning to hide in New Zealand actually.

One thing that may help people searching the net for data about Gilead, or pretty much anything else is a "Site" search in case you are not aware how to use them.

Not very sophisticated but is useful where you know a site name and suspect there may be useful info that you want to find. Especially useful for forums where the search engine is rubbish, as many are

or the site only allows members to search

So open your favourite search engine and type in:

Site: nameofsite.com [words, to, search, for]

Hope that helps.

G

hepatitiscnewdrugs.blogspot.com.au/2015/...nds-revenue.html?m=1

Gilead under the pump from US lawmakers.

www.wsj.com/articles/BL-270B-1639

Good old Gilead...,,

Gilead Sciences "Greed Manifesto" rearing its ugly head, I live in hope to see it severed from humanity.

Makes me ill to see it fully declared in all its ugliness.

encrypted-tbn1.gstatic.com/images?q=tbn:...WFuiHF0-JyoJpldSBaVT

Foxes in charge of the henhouse, huh

"shareholders will be allowed to vote on resolutions that would require the drug makers to publish reports evaluating the risks of the pricing policies for the medicines

....As a result of some pricing strategies, there may be real and practical consequences with payers and policy implications in the form of potential oversight or regulation,” says Meredith Miller, the chief corporate governance officer for the trust.

Specifically, the trust wants to know drug development costs; relationships between pricing, clinical benefits and patient access; price disparities between the U.S. and other countries; price sensitivity of payers and patients; and whether payers are increasingly likely to use cost-effectiveness techniques to make reimbursement decisions."

Nausea? There may be some underlaying humanitarian method to Gilead's strategy?

While some may think it is just obnoxious greed and a disregard for everything of value that is not money, I have to say:

1. Gilead's cunning methods led me to read in the paper (SMH Sept 2015) about Dr Freeman and Mr Jeffries offering affordable generics that saw me seek treatment and have me UND now. My thanks to both of them as well as this saved me a long sick wait until next year.

2. Gilead's methods have forged an international community of people on this forum who appear to care about one another other then just money.

3. being part of this forum I got to see a video about some young bloke running around through the city jumping over railings and things (wish I could remember which post).

While an OA for Dr Freeman et al. is in order, in the case of Gilead, well their shear deprecating genius of using greed to assist me to get better....., should I say maybe the big one (Nobel PP) is in order?

If not the PP for Gilead, then the OA for Dr Freeman and Mr Jeffries will suffice, along with a hint at where the young bloke jumping down steps and over railings is located.

As you may guess I got good bloods!

J.