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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.
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
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
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
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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
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