Welcome, Guest
Username: Password: Remember me
  • Page:
  • 1
  • 2

TOPIC:

Where are the hordes of Newbies? 6 years 7 months ago #15035

I just want to say, I am kind of surprised given all the news Dr. Freeman got that there is not a flood of newbies on the site. Seems like for a day or two there was, but now it died down.

Maybe having Hep C is trendy :ohmy: :-1:

In USA it seems like everyone is constantly on their smartphone, but only checking facebook or ordering products, not reading news.
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

Please Log in or Create an account to join the conversation.

Last edit: by Greedfighter.

Where are the hordes of Newbies? 6 years 7 months ago #15041

  • DrJames
  • DrJames's Avatar
  • Offline
  • Platinum Member
  • Platinum Member
  • Posts: 1980
  • Karma: 111
  • Thank you received: 7261
Hi GF,

Yes there was a blip, but that was it.



While the coverage in the medical press was nice virtually no patients read that sort of thing. What would have been nice, but did not happen was for the New York Times, Washington Post, or Boston Globe to pick up the story and push it into the mainstream media. Sadly the story of generics working was considered insufficiently interesting.

The blips on the traffic chart correspond closely with mainstream media attention, and to get the message out there that's where it has to appear.

There has been interest from doctors across the world, but that will only result in a slow organic growth. What would really kick it is having patients opening the discussion of generics with their doctors, but for now most patients don't know it's a viable option.
YMMV
Attachments:
The following user(s) said Thank You: mgalbrai, CJ, Ariel, Hazel, Greedfighter, Matt-Kenney-google

Please Log in or Create an account to join the conversation.

Where are the hordes of Newbies? 6 years 7 months ago #15044

Hi Dr. Freeman,

There has been one big change: a Google search for Generic Hep C shows your Web MD story and the Fix Hep C site within the first 8 listings. So if people are curious, they will find you! :cheer: :+1:
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
The following user(s) said Thank You: mgalbrai

Please Log in or Create an account to join the conversation.

Where are the hordes of Newbies? 6 years 7 months ago #15046

  • beaches
  • beaches's Avatar
  • Offline
  • Platinum Member
  • Platinum Member
  • The life you save will be your own. START TREATMENT
  • Posts: 760
  • Karma: 25
  • Thank you received: 2254
It would be excellent if a program like the ABC Health Report would cover it
Genotype 1a
Diagnosed in 2004, had HCV for all my adult life. Until 2016!!!!
Harvoni treatment, started 19 March 2016
4 week results Bilirubin 12 down from 14 pre treatment,
Gamma 25 down from 52, ALT 19 down from 63, AST 19 down from 47,
VL <15 down from a lazy 6 million or so

EOT Results
Bilirubin 10, GGT 18, ALT 19, AST 21, VL UND

12 Weeks post EOT
Bilirubin 11, GGT 16, ALT 22, AST 20, VL UND
Cured baby

Please Log in or Create an account to join the conversation.

Where are the hordes of Newbies? 6 years 7 months ago #15047

I would advise anyone in who wants to get treated with generic medication and is apprehensive about approaching their GP print out a couple of the articles about Dr Freemans adventures in Barcelona stating it has been proved that these medication are safe and are just as effective as the branded medication. Make an appointment and show these findings, you have every right to ask and there is the proof that the stuff works.

Knowledge is power.
SVR 24
The following user(s) said Thank You: mgalbrai, CJ, Ariel, Hazel, Greedfighter

Please Log in or Create an account to join the conversation.

Where are the hordes of Newbies? 6 years 7 months ago #15048

  • DrJames
  • DrJames's Avatar
  • Offline
  • Platinum Member
  • Platinum Member
  • Posts: 1980
  • Karma: 111
  • Thank you received: 7261
Yes, this is good but.....

Most sadly patients don't know what a generic is. There is a lot of searching going on - about 2.25 million searches a month according to Google but the words ordinary people (as opposed to people on forums like this use) don't currently bring us up:


YMMV
Attachments:
The following user(s) said Thank You: mgalbrai, Ariel, Greedfighter

Please Log in or Create an account to join the conversation.

Last edit: by DrJames.

Where are the hordes of Newbies? 6 years 7 months ago #15050

Hence the reason for the translators, I hope the information spreads so more people get to find out and do something about it while they still can.

Shame you couldn't put up a pirate message on google whenever anyone searched for Hep C hahaha
SVR 24
The following user(s) said Thank You: mgalbrai, Greedfighter

Please Log in or Create an account to join the conversation.

Where are the hordes of Newbies? 6 years 7 months ago #15055

I want you to know I did just that just this week. Opened the discussion with my doctor. Armed with a printout of the article from WebMD.
After reading for a minute he asked if he could make a copy of it. I said he could have that one because I have more copies already printed out.
I feel it definately helped to push him in the direction to write me a prescription for generic Harvoni, because after reading that he asked, Who should I make it out to, FixhepC or you?
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!
The following user(s) said Thank You: DrJames, coral, mgalbrai, Ariel, Gaj, Tina-Hill-facebook, Hazel, Greedfighter

Please Log in or Create an account to join the conversation.

Where are the hordes of Newbies? 6 years 7 months ago #15056

Matt-Kenney-google wrote: I want you to know I did just that just this week. Opened the discussion with my doctor. Armed with a printout of the article from WebMD.
After reading for a minute he asked if he could make a copy of it. I said he could have that one because I have more copies already printed out.
I feel it definately helped to push him in the direction to write me a prescription for generic Harvoni, because after reading that he asked, Who should I make it out to, FixhepC or you?




Nice one Matt! where in the world are you?
#woohoo!
SVR 24
The following user(s) said Thank You: mgalbrai, Greedfighter, Matt-Kenney-google

Please Log in or Create an account to join the conversation.

Last edit: by Tina-Hill-facebook. Reason: add more in

Where are the hordes of Newbies? 6 years 7 months ago #15081

  • fretboard
  • fretboard's Avatar
  • Offline
  • Elite Member
  • Elite Member
  • Defender-Against Big Pharma!
  • Posts: 175
  • Karma: 3
  • Thank you received: 340

Greedfighter wrote: In USA it seems like everyone is constantly on their smartphone, but only checking facebook or ordering products, not reading news.


Got that right! The US is slow to come around to generics, not sure why. I think US residents are not aware that they can legally buy generics and Customs will allow the drugs delivered to their homes. That's what I was leery about but Customs held my pack for only 2 days and they were really cool about it, no hassle whatsoever. Also, I don't think they pull every pack of drugs, I'm sure it's done randomly. Wake up US!!
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 following user(s) said Thank You: mgalbrai, Greedfighter

Please Log in or Create an account to join the conversation.

Where are the hordes of Newbies? 6 years 7 months ago #15082

Greedfighter wrote:
In USA it seems like everyone is constantly on their smartphone, but only checking facebook or ordering products, not reading news.


Don't get me started... Lol. Everyone is living their life through a 2" screen, when real life is right in front of them.......SMH.
This email address is being protected from spambots. You need JavaScript enabled to view it.

Genotype 3
VL 4,100,000
ALT 101 AST 71
Treatment Naive
Started Sof/Dac Jan 12, 2016
VL= <15 4 weeks in. AST/ALT normal.
VL=UNDETECTED 8 weeks in.
SVR4= Virus back. 3,300,000

Started generic Epclusa Sep. 23, 2017

4 weeks in <15 *Detected.
12 weeks in <15 *Not Detected.
16 weeks in <15 *Not Detected.
Finished 24 weeks treatment 3-17-18
SVR5 <15 Not Detected.
SVR 20 <15 Not Detected.
SVR 44 <15 Not Detected.

Thank you Jesus.
Thank you Dr. James
The following user(s) said Thank You: mgalbrai, Greedfighter

Please Log in or Create an account to join the conversation.

Where are the hordes of Newbies? 6 years 7 months ago #15102

  • EC2
  • EC2's Avatar
  • Offline
  • New Member
  • New Member
  • Posts: 6
  • Karma: 1
  • Thank you received: 20
Couple of thoughts on this topic:
1. spreading the news ww is one parameter which is time consuming, having trust that generics do works is the 2nd parameter.
2. Barriers: Big pharma, perhaps NHS from each country, doctors not being informed about generics from India, patients not knowing there exist the cure.
3. Further barriers: distrust of patients/doctors that generics do work; place of manufacturing - low income countries (India, Bangladesh, Egypt,etc) do raise the level of distrust; sourcing possibilities: fear of getting fake medication due to scams.
4. and further barriers: literacy of patients (medical knowledge as well as english knowledge), IT resources (computer, internet, skills to search on internet)

Looking at the barriers from above, I believe this explains somehow why spreading the news will take some time. Sad that in all this time more people will die of HCV.....

Cheers
The following user(s) said Thank You: DrJames, Matt-Kenney-google

Please Log in or Create an account to join the conversation.

Where are the hordes of Newbies? 6 years 7 months ago #15106

I am reading this topic with a smile on my face...
Someone got a prescription written for generics.based on an article printed from the Internet. We have a long way to go, but look how far we've come!
7 months ago, I sent $2000 to a stranger in China, based on the advice of some stranger strangers in Tasmania.
Now, it seems so "easy".
That's why I am smiling!
The US doctors & patients are frustrated by these high prices and insurance denials. The patients are also mad as hell if they are anything like me.
You can't sell something to somebody if they don't know about it.
The doctors, or the APNs who handle most HCV cases in the U.S., need to be educated. Do they have an annual convention? A place where a few of us could go and get their attention.
Every profession has to "convene" once in a while.
The professional journals and publications could be another way to get the information where it needs to go. We have been carpet bombing. Maybe we need to snipe for a while.
The doctors are the keys.
m
This email address is being protected from spambots. You need JavaScript enabled to view it.
forums.delphiforums.com/generichcvtx

G 1a F-1
Started tx 10/23/15 (Meso sof & led) ALT 48 AST 28 v/l 1.6 mil
11/17/15 4 wk lab ALT 17 AST 16 <15
11/18/15 Started Harvoni
12/16/15 8 wk lab ALT: 15 AST: 13 V/l UND
1/14/16 Fin. Tx
7/07/16 UND SVR 24
The following user(s) said Thank You: DrJames, Joy, Vororo, Ariel, Gaj, Tina-Hill-facebook, IRMA88, Hazel, Greedfighter, Matt-Kenney-google

Please Log in or Create an account to join the conversation.

Last edit: by mgalbrai.

Where are the hordes of Newbies? 6 years 7 months ago #15135

Hi Mike,

I totally agree, the doctors are the key. Going to a convention is a great idea.

A couple of months ago I investigated the ability to email US Gastrointestinal specialists. There are lists available of their emails, but they cost money I don't have. A well done pdf file about generics including Dr. Freeman's WebMD article and FixHepC contact info might also be another option. Maybe mentioning the Redemption trials and / or Incepta contact info.

It's going to come down to the patient in the end in the USA to make the purchase, but the doctor could make them aware of the opportunity, either offer support via an RX or suggest GP2U.com. I know in NJ, doctors can only write an RX that will be redeemed in NJ, so GP2U will be a critical link in many states.
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
The following user(s) said Thank You: mgalbrai, Ariel

Please Log in or Create an account to join the conversation.

Last edit: by Greedfighter.

Where are the hordes of Newbies? 6 years 7 months ago #15142

  • Ariel
  • Ariel's Avatar
  • Offline
  • Platinum Member
  • Platinum Member
  • Cured, SVR 24
  • Posts: 1064
  • Karma: 31
  • Thank you received: 3084
It breaks my heart reading the hardships in the US and Canada.
:dry:
#love
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 following user(s) said Thank You: mgalbrai, Greedfighter, Matt-Kenney-google

Please Log in or Create an account to join the conversation.

  • Page:
  • 1
  • 2
Time to create page: 0.664 seconds

Copyright © 2015-2020 FixHepC

Back to Top