Welcome, Guest
Username: Password: Remember me

TOPIC: Whack-a-mole

Whack-a-mole 5 years 2 months ago #20940

  • DrJames
  • DrJames's Avatar
  • Offline
  • Platinum Member
  • Posts: 1965
  • Thank you received: 7218
  • Karma: 109


Advocating for access to HCV generics feels a bit like being a mole in whack-a-mole. Shortly after we stick our heads up on the Internet more or less anywhere sites get hacked, accounts get closed, comments get deleted.

Globally the story of generics should be getting out there. With HIV generics it did, with HCV generics it's struggling. Here's a typical scenario:



This issue is amenable to a quiet citizen led protest but I'm here to tell you that without a concerted effort it's entirely possible the powers that be will be able to continue to keep generics from the majority, simply by keeping the knowledge of generics from the majority.
YMMV
Last Edit: 5 years 2 months ago by DrJames.
The administrator has disabled public write access.

Whack-a-mole 5 years 2 months ago #20945

  • Matt-Kenney-google
  • Matt-Kenney-google's Avatar
  • Offline
  • Platinum Member
  • Avatar-Gaelic for "Welcome"
  • Posts: 424
  • Thank you received: 1314
  • Karma: 10
Thanks for the graphics James. No one promised this'd be easy Doc. It may just take longer than we thought :+1:
We're still behind you and growing. :+1: :+1: :+1: :+1: :+1:

Matt
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!
Last Edit: 5 years 2 months ago by Matt-Kenney-google.
The administrator has disabled public write access.
The following user(s) said Thank You: Lynne-Francis-facebook, Hazel, rohcvfighter, fitz

Whack-a-mole 5 years 2 months ago #20946

Would having the right post to go viral be a way to influence an upward spike in the graph?
SVR 24
The administrator has disabled public write access.
The following user(s) said Thank You: mgalbrai, Gaj, Hazel, Matt-Kenney-google, rohcvfighter, fitz

Whack-a-mole 5 years 2 months ago #20949

  • 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
Hello dr. Freeman,

the picture describes perfectly the reality :).
One remark: you used the "wrong" picture having too few moles. To me it looks like you "accidentally" took the picture of Big Pharma trying to justify the high prices and the generic's hammer hitting their heads to lower the prices. The "real" board for HCV generics must have by now hundreds/thousands of moles with Big Pharma desperate in trying to hit all the heads :)

P.s. a picture to start a nice day ;-)

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: Tina-Hill-facebook, fitz

Whack-a-mole 5 years 2 months ago #20954

  • 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
Hello again dr. Freeman,

your post from today made me reflect on how the people around me reacted when they heard about the generic treatment I took and I just realized, thinking on their questions, that their concerns were not so much related to the efficacy of the drugs rather on how to access the treatment without going to jail or be cheated.

In terms of efficacy, I am asked whether it worked and people get amaized when I tell them I got UND results after 4 weeks of treatment and again at the end of the treatment.
But the sensitive questions were:
- is it legal to buy it?
- if I would order it, how can I be sure I will not get fake drugs?
- how to convince my doctor to give me the script?
- aren't you affraid to talk about generic medication? (Many people seems to think that if the government did not approved the sale of generic drugs then it is not allowed to talk about it -> please remember that I live in a former comunist country where the freedom of speech is still seen by many as a kind of special thing allowed only for some people).
- would the healthcare system pay for my generic drugs?

All these questions make me think that many people are already aware that the treatment with generics is working, they just need to know how to take the "real generics" and not risk about breaching the law or offending their doctor by asking for the script.

Strange how much the things changed in the last 12 months....

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
Last Edit: 5 years 2 months ago by rohcvfighter.
The administrator has disabled public write access.
The following user(s) said Thank You: Lynne-Francis-facebook, beaches, Meg, fitz

Whack-a-mole 5 years 1 month ago #21101

  • Sven
  • Sven's Avatar
  • Offline
  • Platinum Member
  • Posts: 333
  • Thank you received: 1212
  • Karma: 24
My issue is different.
My Gastrointestinal Doctor is now refusing to release my UND results to me. His admin stated that after 4 weeks I was UND and that was then the doctor has made excuses going on 3 weeks, not to give me my results. They, US Gastrointestinal Doctors, see generics as a threat to their income. My doctor at first tried to talk me out of generics by saying they could be false, cloned, black market etc but then I said the alternative is certain death for me, he relented. Now that I am UND after 4 weeks he knows it is legit, he will not return my calls and has his assistant tell he was on vacation and would not release results to me until he signed them, now she tells me he is so far backed up he doesn't know when I'll get them! This is because of all the luxurious gifts they get from big Pharma reps who shower them for using Gilead Abbevie Vikere Pak Harvoni etc, and it will ruin their income stream and perks. Once low-cost meds come on to the marketplace the testing and monitoring will not be as expensive and they will not be able to charge as much so their income level will drop. He is now denying me my results because he's afraid of what the future may bring even though there's no way he can stop it. I'm going there tomorrow to demond my tests if he will give them to me I will say I'll call our local TV news station and let them know what's happening if he doesn't? We'll see what happens. Pathetic!
Contracted HCV 1980's
Geno Type 1a
F3 ( doc says once treated I'll be F2 maybe F1)
Meds shipped 6/17/2016 arrived early 7/2016

Viral count - 3,471,080

4 week quantitative bloods: August 17, 2016. I have been diagnosed as <15 (told undetected)

8 week quantitative bloods: September 14th. I have been diagnosed as <15 (told undetected)

11 week PCR RNA Qualitative bloods: September 26th 2016 - Undetected

December 19th 2016: Cured!
Viral count: zero!!!
2018 viral count: still zero!
Cured!
The administrator has disabled public write access.
The following user(s) said Thank You: beaches, fitz

Whack-a-mole 5 years 1 month ago #21102

  • Tommy
  • Tommy's Avatar
  • Offline
  • Premium Member
  • Posts: 104
  • Thank you received: 210
  • Karma: 1
@sven,
you should share his name and location so I could put it out on every hep c forum and blog out there with your story. His phone won't stop wringing. Write a letter to the editor of your local paper. File a complain with the medical board to.
Genotype 1A
ALT 473
AST 226
Virus Load 3,119,030
Results as of May-2016
5 week viral load/undetected as of 12/02/2016
Liver Biopsy Results from Feb 2013
Portal/Periportal chronic inflammation and mild interface hepatitis (Grade 2)
Focal Lobular chronic inflammation (Grade 1)
Portal/Periportal fibrosis (stage 1-2 trichrome and reticulin stains utilized)
Negative Iron stains.
The administrator has disabled public write access.
The following user(s) said Thank You: beaches, Matt-Kenney-google, fitz, Sven

Whack-a-mole 5 years 1 month ago #21104

  • Sven
  • Sven's Avatar
  • Offline
  • Platinum Member
  • Posts: 333
  • Thank you received: 1212
  • Karma: 24
I would but I have been advised by very respected people here to continue getting the verbal updates on my tests and at the end contact my insurance company and get them involved to get my tests.
Do I want to expose them, you bet, is it feasible as I'm trying to get well, unfortunately no.
It is hard but it is what it is.
Contracted HCV 1980's
Geno Type 1a
F3 ( doc says once treated I'll be F2 maybe F1)
Meds shipped 6/17/2016 arrived early 7/2016

Viral count - 3,471,080

4 week quantitative bloods: August 17, 2016. I have been diagnosed as <15 (told undetected)

8 week quantitative bloods: September 14th. I have been diagnosed as <15 (told undetected)

11 week PCR RNA Qualitative bloods: September 26th 2016 - Undetected

December 19th 2016: Cured!
Viral count: zero!!!
2018 viral count: still zero!
Cured!
The administrator has disabled public write access.
The following user(s) said Thank You: Tommy, rohcvfighter, fitz

Whack-a-mole 5 years 1 month ago #21107

  • 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
Hi Sven,

as the name of this thread says, it is a "Whack-a-mole" game :).

The funny part is that on our side, we may also play the "Whack-a-mole".
Why is that? Because as long as the healthcare system, Big Pharma, uninformed or miss-informed medical staff are playing the song of "legal compliance", "ensuring low risks for the benefit of the patients" and all such things, an HCV patient can / may play also the song of acting with legitimacy in order to get cured.
What I had in view in my case when I decided to get treated with generics:
- it was MY LIFE in charge so the decision to use the generics was mine.
- it was/is my right to be healthy (see Universal Declaration of Human Rights)
- it was my money in place. I was aware from the beginning that I will not be refunded any cost (nor for the drugs, nor for the blood tests), but as long as I pay for the blood tests, I should receive the results.
- thanks to dr. Freeman and Greg, I found out that via Art. 60 from TRIPS, the path to get the generic drugs was in compliance with the legal provisions.

So, now it is my turn to play "Whack-a-mole":
- I reached UND with generic drugs. As of today I have several weeks to wait till week #12 after EOT, however I do believe that it worked very well.
- I did not had to wait (not anymore) for the mercy of the healthcare system or the Big Pharma and I got treated with an affordable cost. Every time I say these to people around me, everyone gets amazed and say the "WOW".
- whenever someone tells me that the generic drugs might be fake, or not efficient or illegal, I take my "hammer" and talk about me being UND, the importance of the supply chain integrity for generic drugs and the Art. 60 from Trips. And last but not least the results presented by dr. Freeman at ILC Barcelona, the trip made by Greg Jefferys to India, etc.

Yes, I do agree that many people (doctors or not) are still very reluctant to the idea of generic drugs, however the fact that they are reluctant it is NOT because the generic drugs are having an issue, rather it is their own (I would say wrong or incomplete) perception about the generic drugs.

P.S. sorry for all the bolds and underlined words in this post.

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: beaches, fitz, Sven

Whack-a-mole 5 years 1 month ago #21108

  • Sven
  • Sven's Avatar
  • Offline
  • Platinum Member
  • Posts: 333
  • Thank you received: 1212
  • Karma: 24
RHF
Thank you. You know I agree with what you said and before I sign out of here I wanted to say that.
The big pharma reps shower these docs with huge gifts of gratis when they play kind with billion dollar companies, when they don't though they get their friends to hate them by forming cliques against them, and to think they were once friends! The cliques are ever present even in our group of like minded patients, all in theory on the same page BUT if you sway from them in the slightest their nails get long and they react by forming their own cliques too. So who the hell knows "who's on first" anymore? So I thank you for your brilliant commentary and social equilibrium, ah what a refreshing read that was.
Cheers my friend but watch your back here your Karma will disappear if you don't kiss the right booty!
:)
Contracted HCV 1980's
Geno Type 1a
F3 ( doc says once treated I'll be F2 maybe F1)
Meds shipped 6/17/2016 arrived early 7/2016

Viral count - 3,471,080

4 week quantitative bloods: August 17, 2016. I have been diagnosed as <15 (told undetected)

8 week quantitative bloods: September 14th. I have been diagnosed as <15 (told undetected)

11 week PCR RNA Qualitative bloods: September 26th 2016 - Undetected

December 19th 2016: Cured!
Viral count: zero!!!
2018 viral count: still zero!
Cured!
The administrator has disabled public write access.
The following user(s) said Thank You: Tina-Hill-facebook, rohcvfighter, fitz

Whack-a-mole 5 years 1 month ago #21172

Sven wrote:
RHF
Thank you. You know I agree with what you said and before I sign out of here I wanted to say that.
The big pharma reps shower these docs with huge gifts of gratis when they play kind with billion dollar companies, when they don't though they get their friends to hate them by forming cliques against them, and to think they were once friends! The cliques are ever present even in our group of like minded patients, all in theory on the same page BUT if you sway from them in the slightest their nails get long and they react by forming their own cliques too. So who the hell knows "who's on first" anymore? So I thank you for your brilliant commentary and social equilibrium, ah what a refreshing read that was.
Cheers my friend but watch your back here your Karma will disappear if you don't kiss the right booty!
:)


Too bloody right Sven!!!!!!!
SVR 24
The administrator has disabled public write access.
Time to create page: 0.087 seconds

Copyright © 2015-2020 FixHepC

Back to Top