Welcome, Guest
Username: Password: Remember me

TOPIC: We are moving the awareness needle

We are moving the awareness needle 5 years 2 months ago #16243

  • DrJames
  • DrJames's Avatar
  • Offline
  • Platinum Member
  • Posts: 1960
  • Thank you received: 7205
  • Karma: 108
Here is a graph of user registrations versus time. If you look at what's been happening over the last week we can see a solid uptick, so people here putting out the word certainly seems to be having an impact! Thanks for the great work to all who have been posting elsewhere.


YMMV
Last Edit: 5 years 2 months ago by DrJames.
The administrator has disabled public write access.
The following user(s) said Thank You: tweakmax, LondonGirl, coral, Vororo, mgalbrai, Paul-Jarman-facebook, Price, Ariel, Gaj, Lynne-Francis-facebook, beaches, IRMA88, isaing4, Hazel, CC2B, MtGoat, Greedfighter, Matt-Kenney-google, Meg, GT2 and this user have 1 others thankyou

We are moving the awareness needle 5 years 2 months ago #16638

Ive had a thought how we can spread awareness without being subject to outright BS from the likes of people and associated organisations who stand to loose a shitload of money from the manufacture and distribution of generic's.

How about the idea of a Fix hep C bumper sticker -

for example -
"Got Hep C?
Fix Hep C
email address here
SVR 24
Last Edit: 5 years 2 months ago by Tina-Hill-facebook.
The administrator has disabled public write access.

We are moving the awareness needle 5 years 1 month ago #16977

  • rohcvfighter
  • rohcvfighter's Avatar
  • Offline
  • Platinum Member
  • Vindecat de HCV cu med. generice. Cured with generics HCV drugs.
  • Posts: 389
  • Thank you received: 1594
  • Karma: 15
I've been monitoring in the last weeks several online articles in Romania about the new interferon-free Hep C treatment and I noticed couple of interesting phenomenons:
- the number of recommendations given by the visitors about generic medication for Hep C increased by compare with March 2016;
- a change in the way people are asking questions about the Hep C medication: the old question was "I have Hep C, how can I get treated?". The new question I've started to see more often is: "How can I get the generic medication?". This would indicate that people are being more and more informed that there exist affordable medication, so now their major concern is how to prevent buying fake medication.

P.S. and yes, I've seen also some F...K words addressed to politicians, government and/or the national healthcare system for not doing too much for the patients.

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
The administrator has disabled public write access.
The following user(s) said Thank You: DrJames, Archer, coral, pat1, mgalbrai, Price, Ariel, Gaj, beaches, isaing4, Meg, GT2, fitz

We are moving the awareness needle 5 years 1 month ago #17009

  • fitz
  • fitz's Avatar
  • Offline
  • Platinum Member
  • Cured with generic DAAs. Hep C kills. Treat now!
  • Posts: 496
  • Thank you received: 1805
  • Karma: 23
I just noted a moment ago that there were 9 members, and 1327 guests on the site :)

Welcome!
Failed Interferon 96', G1a, VL = 9 - 5.5 Million, F3/A3, AST 111, ALT 190, Generic DAA treatment Sof/Led (Mylan - India MYHEP LVIR) - 8 June, 2016
2 Week Results 20 June, 2016 AST 19, ALT 32
4 Week Results 06 July, 2016 AST 22, ALT 30, VL = 35
6 Week Results 20, July 2016 VL only = HCV RNA Detected, Non-Quantifiable <15
8 Week Results 04 August 2016, Labs, LFTs Normal, VL = UND
12 Week Results 31 August, 2016 LFTs Normal, VL = UND
EOT + 4 Weeks, LFTs Normal, VL = UND, "SVR4"
SVR12, 21 Nov 2016. CURED!!!
Last Edit: 5 years 1 month ago by fitz.
The administrator has disabled public write access.
The following user(s) said Thank You: Price, Meg, GT2

We are moving the awareness needle 5 years 1 month ago #17077

  • Paul-Jarman-facebook
  • Paul-Jarman-facebook's Avatar
  • Offline
  • Moderator
  • The gypsy woman told my mother Before I was born
  • Posts: 383
  • Thank you received: 659
  • Karma: 9
fitz wrote:
I just noted a moment ago that there were 9 members, and 1327 guests on the site :)

Welcome!

And 5681824 hits :)
Two time relapser.

SVR 4 achieved 12/16 at last
SVR 12 achieved 22/02/2017 The Bastard has been defeated :):):)

GT 3 - about 28 yrs with HCV
The administrator has disabled public write access.
The following user(s) said Thank You: Joy, Price, Ariel, Gaj, fitz

We are moving the awareness needle 5 years 1 month ago #17084

  • rohcvfighter
  • rohcvfighter's Avatar
  • Offline
  • Platinum Member
  • Vindecat de HCV cu med. generice. Cured with generics HCV drugs.
  • Posts: 389
  • Thank you received: 1594
  • Karma: 15
Sometimes I get upset because doctors, teachers, politicians think way tooooo much before deciding to take action in cases where there is news about revolutionary things, like generic HCV medication.

I wonder sometimes what are the students from the medicine universities thinking, when they become aware about such solutions and despite that they see their teachers or master doctors adopting a passive or critical position?

How would the students react if they would see this information on their forums and not on the official university newspaper?
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
The administrator has disabled public write access.
The following user(s) said Thank You: Joy, Price, Ariel, isaing4, fitz

We are moving the awareness needle 5 years 1 month ago #17155

  • fitz
  • fitz's Avatar
  • Offline
  • Platinum Member
  • Cured with generic DAAs. Hep C kills. Treat now!
  • Posts: 496
  • Thank you received: 1805
  • Karma: 23
rohcvfighter wrote:
Sometimes I get upset because doctors, teachers, politicians think way tooooo much before deciding to take action in cases where there is news about revolutionary things, like generic HCV medication.

I wonder sometimes what are the students from the medicine universities thinking, when they become aware about such solutions and despite that they see their teachers or master doctors adopting a passive or critical position?

How would the students react if they would see this information on their forums and not on the official university newspaper?

That's a great point, rohcvfighter. Raising awareness among medical students, and on university campuses!

While the establishment press is beholden to big pharma for advertising revenues - campus newspapers, student forums, and free press outlets are not.

As for establishment docs who tow the party line, I wonder what they would do if they were in our shoes and THEY were denied timely, state of the art treatment until they were "sick enough".

I rather suspect that not a few doctors follow this forum with a great deal of interest.
Failed Interferon 96', G1a, VL = 9 - 5.5 Million, F3/A3, AST 111, ALT 190, Generic DAA treatment Sof/Led (Mylan - India MYHEP LVIR) - 8 June, 2016
2 Week Results 20 June, 2016 AST 19, ALT 32
4 Week Results 06 July, 2016 AST 22, ALT 30, VL = 35
6 Week Results 20, July 2016 VL only = HCV RNA Detected, Non-Quantifiable <15
8 Week Results 04 August 2016, Labs, LFTs Normal, VL = UND
12 Week Results 31 August, 2016 LFTs Normal, VL = UND
EOT + 4 Weeks, LFTs Normal, VL = UND, "SVR4"
SVR12, 21 Nov 2016. CURED!!!
Last Edit: 5 years 1 month ago by fitz.
The administrator has disabled public write access.
The following user(s) said Thank You: LondonGirl, Price, isaing4, rohcvfighter, GT2

We are moving the awareness needle 5 years 1 month ago #17166

  • Ariel
  • Ariel's Avatar
  • Offline
  • Platinum Member
  • Cured, SVR 24
  • Posts: 1064
  • Thank you received: 3083
  • Karma: 31
Tina-Hill-facebook wrote:
Ive had a thought how we can spread awareness without being subject to outright BS from the likes of people and associated organisations who stand to loose a shitload of money from the manufacture and distribution of generic's.

How about the idea of a Fix hep C bumper sticker -

for example -
"Got Hep C?
Fix Hep C
email address here

Fabulous idea Tina with lots of thankyous means people agree with your idea which I can support (I am sure lots of people can also support but just offering anyway)

I'm able to have stickers produced excellent quality waterproof high gloss and it's what I do (I have a range of surf decals and car stickers I own) my producer is local to me and extremely reasonable.
If this is a go I am willing to assist.
Regards
Ariel
Gen 1a
Peg/inf/riba 2012(!) stop @ Wk 43 potassium low +issues (rlps week 4 post tx, VL120,000) scnds eg. adenomas.
pre sof/led VL 240,000 Fibsc F0
Day 25 <30
Day 32 UND
Week 10 UND
EOT UND ALT11AST17GGT19
SVR4 UND ALT10 AST16 GGT13
SVR8 UND ALT <9 AST16 GGT15
SVR12 UND ALT14 AST19 GGT12 Bili 5
EOT +18 ALT13 AST20 GGT9 Bili 5
EOT +21 ALT11AST15
Cured SVR12
Dysplasia Adenomas RemvdAug '16
SVR24 UND ALT11AST16
ColonoscopyClear Nov17
LumpectomyClear ‘18
LithotripsyCytoscopyBiopsy 4/18
The administrator has disabled public write access.
The following user(s) said Thank You: Price, Gaj, Tina-Hill-facebook, Hazel, rohcvfighter, GT2, fitz

We are moving the awareness needle 5 years 1 month ago #17184

  • fretboard
  • fretboard's Avatar
  • Offline
  • Elite Member
  • Defender-Against Big Pharma!
  • Posts: 175
  • Thank you received: 340
  • Karma: 3
Tina-Hill-facebook wrote:
Ive had a thought how we can spread awareness without being subject to outright BS from the likes of people and associated organisations who stand to loose a shitload of money from the manufacture and distribution of generic's.

How about the idea of a Fix hep C bumper sticker - for example -
"Got Hep C?
Fix Hep C
email address here

Yeah, I really like that idea a lot. Stickers or T-Shirts, I'll buy and wear proudly!!

G1a dx'd in 1992, Biopsy F2 VL 8mill +. Tried tx with Interferon/Riba, back in 2008 didn't last long it felt horribly ugly!! I stopped tx, after 5 weeks!!
Started tx 6/1/16 with Harvoni.
12 Month Labs= UND
The administrator has disabled public write access.
The following user(s) said Thank You: Price, Tina-Hill-facebook, rohcvfighter, GT2, fitz

We are moving the awareness needle 5 years 1 month ago #17210

  • cowboyjavajoe
  • cowboyjavajoe's Avatar
  • Offline
  • New Member
  • Posts: 16
  • Thank you received: 46
  • Karma: 0
The word "exponential" comes to mind when I see the sharp upturn at the and of the graph. I don't think there is any stopping it now. The word is getting out. Thank you Dr. Freeman and Greg Jefferys for making it all happen. Thank you for coexisting peacefully, because it took both of you to make a believer out of a very skeptical me. - Jeff's simple blog to make me say "Hey this guy really did this and he got well", and to Dr. Freeman for educating and providing a way that we could have actually obtained the meds. (Happily, in our case, the Harvoni appeal was finally approved, but I'll have to say a very tiny part of me wishes Joe was taking the generic just so I could be more believable when I spread the word, as I know he would have gotten well either way) Many others are going to jump in to try to get a piece of the pie now that you two have blazed a path....some will have motives very different than yours - there is lots of money to be made here, even at generic prices - but no matter what their motives are, at least more people will get well. Sadly, you will probably never get the worldwide recognition you deserve. -- MsJoe ***edited to add - I just saw fritz mentioned the exponential upturn in the graph on another thread - stated much more eloquently than here.....It would be awesome if the word would spread as fast as the virus replicates!***
GT 1b
Diagnosed 2014
tx naive
alt 309
ast 174
fibrotest 0.73 (f3/f4)
acti test 0.93 A3
VL 14,660,000+ (Jan 2016)
Started Harvoni 5/16/16
5/31/16 VL 239
Last Edit: 5 years 1 month ago by cowboyjavajoe. Reason: add note
The administrator has disabled public write access.
The following user(s) said Thank You: Price, Gaj, Hazel, GT2, fitz

We are moving the awareness needle 5 years 1 month ago #17220

  • Price
  • Price's Avatar
  • Offline
  • Elite Member
  • Posts: 237
  • Thank you received: 342
  • Karma: 9
Fitz, I offered to have all the nursing students visit my dept so they can see what we do. So I get them two at a time for a whole shift and I have their undivided attention. ;)

I've also been talking to the doctors. I tell them that there are now generics of the expensive meds for hep c and they are backed up by the International Liver conference and hand them a handwritten card with the FixHepC link.



P.
Last Edit: 5 years 1 month ago by Price.
The administrator has disabled public write access.
The following user(s) said Thank You: Joy, Debs, IRMA88, isaing4, Hieupham, Hazel, GT2, fitz

We are moving the awareness needle 5 years 1 month ago #17221

  • fitz
  • fitz's Avatar
  • Offline
  • Platinum Member
  • Cured with generic DAAs. Hep C kills. Treat now!
  • Posts: 496
  • Thank you received: 1805
  • Karma: 23
Awesome, Price!

ETA: Figured out the private chat function. It's so simple its embarrassing! :lol:
Failed Interferon 96', G1a, VL = 9 - 5.5 Million, F3/A3, AST 111, ALT 190, Generic DAA treatment Sof/Led (Mylan - India MYHEP LVIR) - 8 June, 2016
2 Week Results 20 June, 2016 AST 19, ALT 32
4 Week Results 06 July, 2016 AST 22, ALT 30, VL = 35
6 Week Results 20, July 2016 VL only = HCV RNA Detected, Non-Quantifiable <15
8 Week Results 04 August 2016, Labs, LFTs Normal, VL = UND
12 Week Results 31 August, 2016 LFTs Normal, VL = UND
EOT + 4 Weeks, LFTs Normal, VL = UND, "SVR4"
SVR12, 21 Nov 2016. CURED!!!
Last Edit: 5 years 1 month ago by fitz.
The administrator has disabled public write access.

We are moving the awareness needle 5 years 1 month ago #17222

Great stuff. And just to think that none of this would be possible without the internet. Doesn't bear thinking about.
45 yo male; UK; HCV since 1996; G4; F2-3 (fibroscan score 9.1);
Null responder interferon/ribavirin 2008;
4/16 Harvoni 8 weeks; Pre-tx VL 2.1 million; week 4 VL 269; EOT UND; but...
6/16 Tx extended w/ generic sof/dac x 12 weeks due to concerns around my slow response to Harvoni. UND at end of 2nd round of treatment and EOT+4.
The administrator has disabled public write access.
The following user(s) said Thank You: Debs, GT2, fitz

We are moving the awareness needle 5 years 1 month ago #17395

  • Hazel
  • Hazel's Avatar
  • Offline
  • Platinum Member
  • Posts: 414
  • Thank you received: 1699
  • Karma: 39
New plan with comments sections on stories I come across. Instead of just stories that focus on hepc , hit the big popular ones on any health or corporate greed topic. Left one today on a John Oliver story, tenuous connection but has attracted more likes quicker than any other. As the saying goes, everyone knows someone and the bigger the audience the more likely it is someone will see it.
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
The administrator has disabled public write access.
The following user(s) said Thank You: Joy, Gaj
Time to create page: 0.098 seconds

Copyright © 2015-2020 FixHepC

Back to Top