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Twitter 4 years 11 months ago #20962

  • DrJames
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I have to admit I'm something of a Twitter illiterate, but given spreading the news via other channels is becoming problematic - see fixhepc.com/forum/geopolitics/1250-whack-a-mole.html - I think the time to pay attention to it has arrived. Thanks to the patient who suggested pulling the proverbial finger out.

If you're on Twitter please please wander over and follow:

twitter.com/@fixhepc

What will be on it is a daily update of the most interesting story/image we can find. It will be more political than the treatment related stuff you find here.
YMMV
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Twitter 4 years 11 months ago #20963

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Awesome Doc. I admit to the same illiteracy as far as social media goes ... but hey ... it's been proven ... you CAN indeed teach an old dog new tricks.
Trepedaciously yours,

Matt :+1: :+1: :lol:
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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Twitter 4 years 11 months ago #20964

  • rohcvfighter
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Hello dr. Freeman,

Great idea, for sure spending some minutes on Twitter, watching some tutorials, will develop the necessary skills. At least this is what I will do.

With regard to the fact that spreading the news is becoming problematic, I see things slightly different:
- ~1 year ago the idea of treating HCV with generics was ridiculed/disconsidered by many
- today it is fiercly opposed, as you already experienced (and also others)
- "tomorrow" the world will admit as self-evident that HCV will be eradicated via generic drugs.

When a fight is weak, most people are not even aware of it, but when the fight intensifies, it does make people aware of it, so.... I take the current status quo ("generics being fiercly opposed") as a good sign for the way the news is spreading.

The World Hepatitis Alliance, having also Big Pharma companies as sponsors, already recognized (indirectly) that generic drugs are effective and advices governments to make use of voluntary licensing and flexibilities of Trips to treat HCV patients.
www.worldhepatitisalliance.org/en/news/j...ll-being-denied-life -> here the above mentioned statement needs to be read between the lines.

In the end, I would add that when a fight intensifies, both sides are incressing their efforts, thus fighting also on Twitter is a great idea !

Cherrs,
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: 4 years 11 months ago by rohcvfighter.
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Twitter 4 years 11 months ago #20965

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I have followed Lucinda Porter on Twitter for years. I learned of Greg Jefferys through her Twtter retweets. Because of Greg's posts I became familiar with Dr Freeman's work. Now we will be able to retweet Dr Freeman's posts. Great news.
G4
F0-F1
diagnosed in 2006
Tx naive
Treatment started 8/12/16, Ledipasvir/ Sofosbuvir (Harvoni) supplied by Monkmed
8/1/16 ALT 36 AST 40
1/4/17 ALT 17 AST 21
7/13/17 ALT 17 AST 25
12/28/17 ALT 22 AST26
2/22/18 ALT 19 AST 25
7/10/18 ALT 26 AST 32
1/8/19 ALT 16 AST 28
7/2/19 ALT 16 AST 26
Hcv Rna, Quantitative Real Time Pcr <15 NOT DETECTED (IU/mL) NOT DETECTED
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Twitter 4 years 11 months ago #20967

Sounds exciting and its another channel of spreading the word and more places for comment bombs :woohoo:
SVR 24
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Twitter 4 years 11 months ago #20978

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Thank you.
I will visit your twitter page often and #love and retweet often. From little things big things grow.
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
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Twitter 4 years 11 months ago #20984

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Thanks beaches,

Hints, tips and advice from people who understand the dynamics of Twitter would be appreciated.
YMMV
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Twitter 4 years 11 months ago #20988

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If I can help that's great, however I'm definitely not one of the twitterati. :) I don't feel the Twitter love. :unsure:
One thing I will do is follow the federal Health Minister (is it still Petty Cash?).
Every time you follow a politician they follow you back, so if their staff get hammered with fixhepc tweets, who knows they might just pay attention
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
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Twitter 4 years 11 months ago #20992

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I'm sure there are people here who tweet under various nom de plumes, it's a funny world, twitter.
I certainly have seen some corporate people who I know create very amazing profiles for themselves on Twitter! You can really become anything to anyone on Twitter. I don't think it's a great place to lobby, but you can spread the existence of FHC using it, which I think is great.
Anyhoooooo only my opinion and I will possibly be shot down for it.
Letter writing is good. I'm a letter writer. That way I can put my real name, my academic letters after my name, and write up my projections etc as data in a quantitative predictive way as I reconcile it, and try to make the power players see the big picture fiscally. Haha Beaches re the Health minister ;) :P
Well, happy tweeting and yes it is an interesting cyber world Twitter so wishing all the best with attracting people to generics.
A #flower
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
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Twitter 4 years 11 months ago #20995

  • Greedfighter
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Can you start a twitter account named "Generic Harvoni" or something like that? Might get some interest ;) The word Harvoni is known to any Hep C sufferer with a brain.
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: 4 years 11 months ago by Greedfighter.
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Twitter 4 years 11 months ago #21050

  • rohcvfighter
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I created my Twitter account and enjoyed reading the fixhepc tweets :+1: (well done dr. Freeman & Fixhepc team !!! )
I does not seem to be complicated at all.
For those who had no experience so far with Twitter, here is a short "definition" about what Twitter is (from Wikipedia):

Twitter (/ˈtwɪtər/) is an online social networking service that enables users to send and read short 140-character messages called "tweets". Registered users can read and post tweets, but those who are unregistered can only read them. Users access Twitter through the website interface, SMS or mobile device app.

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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Twitter 4 years 11 months ago #21052

Good idea Greed - I reckon you are onto something there.
SVR 24
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Twitter 4 years 10 months ago #21375

  • rohcvfighter
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In the past 2 weeks I've been a little bit lazy regarding Twitter, however I spent some more time on it in the last 2 days and I made a very good experience

It is a fast way to have access to the latest news about the topics I am interested in (by the way, congratulations to Fixhepc for the interesting tweets ans re-tweets) and I was able to create some minutes ago my first tweet. Incredibly simple :). What is also nice and funny, is that your followers get what you tweet, so if you find an interesting tweet or news somewhere, it is very easy to retweet or make a tweet in order to keep your followers uptodate.

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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