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TOPIC: Advocacy and Big Pharma - Puppets or Pawns?

Advocacy and Big Pharma - Puppets or Pawns? 5 years 2 months ago #20909

  • re_roll
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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.....
contracted Gen 1a in the 70's, dx in 2007...ast 27 to 35...alt 43 to 96...vl 1.2 mil to 8.6 mil.
biopsy F-2 (2012)..pre tx results 1/23/16 ast 32, alt 46, vl 3.1 mil
tx started 2/11/16.... lab results 2/24/16 ast 18, alt 18, vl <15 IU/ml
28 days later.............lab results 3/9/16 ast 21, alt 21, vl UND
56 days later.............lab results 4/6/16 ast 20, alt 22, vl UND
139 days later...........lab results 6/29/16 ast 28, alt 30, vl UND...EOT
SVR24
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Advocacy and Big Pharma - Puppets or Pawns? 5 years 2 months ago #20910

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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
In fiecare an HCV ucide peste 500000 oameni.Medicamentele generice pentru hepatita C functioneaza. Nu deveni statistica! Cauta pe Google “medicamente generice pentru hepatita C”.
HCV kills more than 500000 people every year. HCV generic drugs work. Don't become a statistic.
By sharing this Youtube video you might save someone’s life!
My TX: HEPCVIR-L[generic Harvoni]-India
SVR52 achieved
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Advocacy and Big Pharma - Puppets or Pawns? 5 years 2 months ago #20936

  • Gaj
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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
:cheer: :cheer: :cheer:
Last Edit: 5 years 2 months ago by Gaj. Reason: Correcting initials
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Advocacy and Big Pharma - Puppets or Pawns? 5 years 2 months ago #20941

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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
In fiecare an HCV ucide peste 500000 oameni.Medicamentele generice pentru hepatita C functioneaza. Nu deveni statistica! Cauta pe Google “medicamente generice pentru hepatita C”.
HCV kills more than 500000 people every year. HCV generic drugs work. Don't become a statistic.
By sharing this Youtube video you might save someone’s life!
My TX: HEPCVIR-L[generic Harvoni]-India
SVR52 achieved
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Advocacy and Big Pharma - Puppets or Pawns? 5 years 2 months ago #20942

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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
GT1a; Got it some time in the 70's; Diagnosed @1976
Tx naive
METAVIR: A2-F2
SOT May 18, 2016: CMP: AST 162 ALT 241 VL 13000000
3 weeks after SOT: AST 27 ALT 31 VL 138
Reached EOT Aug. 10, 2016 / Received svr4 results Sept. 20, 2016: AST 22 ALT 24
Hep C RNA "NOT DETECTED"
AS OF 3/20/2017 ,Hep C RNA PCR "NOT DETECTED" THAT'S SVR24!
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Advocacy and Big Pharma - Puppets or Pawns? 5 years 2 months ago #20950

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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.
Genotype 3 30 years, 2x treatment interferon/ribavirin non responder. Cirrhosis 17 years. Fibroscan, decompensating, 40 down to 22 by 29/3/16- now down to 6.5, normal, no cirrhosis. Started Buyers Club Sof/Dac 14 Nov 15. SVR 12 29/0716
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Advocacy and Big Pharma - Puppets or Pawns? 5 years 2 months ago #20957

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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
Gt 1a, F0, VL 6.5 million, AST 59, ALT 62
Started Twinvir 1/15/16
6 wk. labs VL UND, AST 27, ALT 20
EOT labs VL UND, AST 23, ALT 19
SVR 16, VL UND, AST 28, ALT 17
SVR 24 , VL UND, 10/8/16
SVR 125, VL UND, 9/22/18
SVR 230, VL UND, 10/3/20
Last Edit: 5 years 2 months ago by Greedfighter.
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Advocacy and Big Pharma - Puppets or Pawns? 5 years 2 months ago #20977

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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 :D.
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
In fiecare an HCV ucide peste 500000 oameni.Medicamentele generice pentru hepatita C functioneaza. Nu deveni statistica! Cauta pe Google “medicamente generice pentru hepatita C”.
HCV kills more than 500000 people every year. HCV generic drugs work. Don't become a statistic.
By sharing this Youtube video you might save someone’s life!
My TX: HEPCVIR-L[generic Harvoni]-India
SVR52 achieved
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