TOPIC:

see greg jefferys attached blog hepatitisctreatment.homestead.com/velpatasvir.html

most of us here on fixhepc know the situation but for the newbies and uninformed who are
searching for answers and cures, read the latest from Greg. It would have been interesting
to have been a fly on the wall of that meeting.

bottom line....stay away from the World Hepatitis Alliance.....

Hi re_roll,

it is great that you placed here the link to Greg's blog. Thank you for this.

As far as I understand, WHA and other non-profit organizations who pretend to care about HCV patients, are in fact gathering the hoardes of people having HCV to create pressure on the governments to pay more money.
The good thing that I see is that all this pressure requires a relief valve and the relief valve is in fact the generic medication for HCV. It might be that Big Pharma knows this already so it is desperate to make some more money while it can...until the "relief valve" of generic medication will run at full capacity.

Cheers,
RHF

I've moved this discussion from Pharma's Market to here (and relinked the Velpatasvir/Sofosbuvir launch article in the original thread) as it is an important discussion though not directly related to the generics manufacturer it was posted under.

While I don't disagree with Greg's point regarding generic medication and advocacy groups such as WHA and many of their partners I would point out that these groups do provide a means of publicising the existence of the hepatitis pandemic and that there are now medications available that can cure HCV for over 90% of the 180 million people infected worldwide. To me it appears to be a double edged sword.

We have some large advocacy groups providing valuable publicity and information to the generally unaware public on the extent of the hepatitis problem while lobbying politicians for better health services. To achieve this they require funding which governments (and I would suggest many of the public) are not prepared to dip into their pockets to provide. Big Pharma are prepared to put up a large proportion of that funding but in return their expectation is presumably that the advocacy groups don't rock the boat by mentioning the availability of (to us) far cheaper and just as effective generic versions of medications, often licensed by those same manufacturers for what are still very high prices to their target markets.

So on one hand, as someone with HCV who sees and experiences the lack of knowledge of the general public regarding this disease I welcome the advocacy groups' generation of publicity and their lobbying of government for more widespread treatment. On the other, I am appalled by the greed of Big Pharma in the prices they charge for these life saving medications. Prices that drive the huge costs that currently constrain government or insurance company from treating all patients.

But as RHF states, there is a pressure relief valve provided by generic medications that all taxpayers and the insured need to be made aware of whether they have hepatitis or not because currently everyone ends up paying for those extortionate prices. That is where I see people like ourselves and organisations like FixHepC having input into the process by using the opportunities like World Hepatitis Day that these organisations support to nudge that relief valve open a few more turns by opening up the discussion and educating others about the availability of generics.

edit: In other words, we should recognise that many of these advocacy groups may well be used as pawns to do Big Pharma's lobbying but we should make use of the opportunities that they provide to spread the word about generics availability and efficacy.

Hi Gaj,

well said .

I would have couple of points to add:
When thinking to eradicate a disease, the main drivers that I know are: awareness, prevention, diagnosis and treatment (this one being by far the key to solve the problem).
I do agree with the fact that people need to become aware of HCV, to know about prevention means and how to get diagnosed. So the advocacy groups are quite welcomed to do their part here and I am happy that they exist.

However, when talking about the treatment, this is the point that makes the difference and reveals the true intentions: acting for making profit or for eradicating the disease. And this is also the point that reveals the nature of the advocacy groups: puppets of Big Pharma or true fighters of HCV. Up to the point of treatment, distinguishing between them is not so easy, but when discussing about the treatment options, things become much clear.
When an advocacy group (like the one that is very active today in Romania) starts complaining about how hard it is to negotiate with the government (well, I do believe it is) and is illustrating that people proceed with desperate measures by buying (generic) drugs over the internet, drugs which they claim are very often fake in order to increase the pressure on the government to allocate more money, but at the same time DOES NOT USE the opportunity to push forward the idea that CHEAP & EFFECTIVE GENERICS MAY TREAT PEOPLE IN MASS, this tells me that such an advocacy group is a Big Pharma puppet.
In principle, the main goal of an advocacy group must be to ensure that more and more people can get treated, thus it should not waste the opportunity provided by the generics, rather it should seek how people could access the "real generics" knowing that on the market there are scams and fake drugs.

At this stage I can say that I am really thankful to Greg for his blogs and to Fixhepc for providing this space for sharing information as it enabled me to have trust that generics will work and guided me on how to source my medication.

Cheers,
RHF

Great post re_roll!
I enjoyed Gregs take as well, on the other hand what you say Gaj, makes a great deal of sense. If you go to Hazel's post "Gilead Singled Out" and go to the UPI report she has there, reading through the comments on that article you can clearly see Gaj's point.
There remains a huge section of the public that is woefully ignorant when it comes to HVC and generics. You can easily pick out the Big Pharma shills used to spread their propaganda and keep people that way. If hep c advocacy groups help people cut through the fog, that can only work to our advantage to spread the truth about as Gaj put it, "generics availability and efficacy."
Well done to you all. - MK

I agree with Gaj too, partly or mostly, because we do need entities to actually take blood, do fibroscans, print leaflets, help people get generics etc and we may as well, in some cases, use existing structures and services. But it is true to say- any advocacy group that is not pretty active telling people how to get cured, or investigate how to get cured, and telling people about generics is not doing its job. Because it is urgent, lifesaving information.
So, shine a light on them, examine the agenda and where possible get them working for the people they exist for. I wanted more from the NZHF, then they put up that great post I put in the activism thread which is really useful. It comes from the EASL results, it is becoming irresistible. It is a clear test- put it to these organisations now: "Do you support people getting information about generic medication?" if yes, then they have a role to play. If no, they are no use to people so it is a money-go-round. Gilead etc use their funding of charitable groups to avoid tax too and try to appear like good corporate citizens.

Ha ha, I'm taking pride on this one. I got em' right in the eye, their little shill outlet Barron's let my "Steve" posts slide. They actually deleted them and then reposted....could it be even the corporate media is tiring of this disgusting greed?

blogs.barrons.com/stockstowatchtoday/201...&ru=yahoo&yptr=yahoo

Hi GF,

that's a great article, I kind of liked to read that the HCV market for Gilead, Abbvie, etc is shrinking, as the market for generic drugs is in fact increasing .
I struggled a little bit, but I was finally able to place couple of comments (but not all that I prepared, some where not uploaded...like the link to the press release from ILC Barcelona regarding the HCV generic drugs ).

Cheers,
RHF