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VA in USA urged to invoke emergency powers 6 years 8 months ago #8926

dointime wrote:

splitdog wrote: This whole thread should be deleted. All it will do is divide us, just as politics is doing in the US right now. ;)


I think that if something is censored then the reasons for this should be clear and the rules on censorship should be made known. This is in fact exactly the case here on fixhepC where the Doc has made his rules clear. Just having an opinion which is divisive is not one of the reasons which would justify deleting a whole thread.

The right to free speech (in general, not on this site) has been much in the limelight this week with the 3 hour debate in the UK parliament on whether Trump should be banned from the UK. Many powerful arguments were made on both sides concerning his divisive rhetoric. For those who are interested, here's just one report on that debate.
www.vox.com/2016/1/20/10799886/uk-trump-visa

My point is that we should be very careful indeed about what is censored if we don't want a site where everybody has to sing the same tune to be here.

dt


I agree. Just having a point which may be divisive is no reason to 'Ban' Trump. :) Well said. Either you have free speech, or you don't.
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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
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VA in USA urged to invoke emergency powers 6 years 8 months ago #8927

Emilio, I totally agree but 200K vets x 90K is 18 billion! That buys a lot of private jets and hookers! :evil: :evil: :evil: GREEDIAD!!!!
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
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Last edit: by Greedfighter.

VA in USA urged to invoke emergency powers 6 years 8 months ago #9026

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Would it be technically possible to have a little button next to each post that says something like "Hide/Unhide" or "Shrink/Enlarge"? This would then minimise the message to show only the first line or two, for example?


At the moment I don't think that exists. It probably could. I guess you had something in mind for the readmore like this spoiler where it is collapsed until you open it. The technical problem is that this won't speed download times because it's still there (downloaded), it's just being hidden.

Warning: Spoiler!
YMMV
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Last edit: by DrJames.

VA in USA urged to invoke emergency powers 6 years 8 months ago #9047

Hi Vororo,

"Would it be technically possible to have a little button next to each post that says something like "Hide/Unhide" or "Shrink/Enlarge"? This would then minimise the message to show only the first line or two, for example?

I ask only because there are more and more one-liners on the forum like "Great news!", "Glad you are doing so well!", etc, which are great to see for the first time (especially for the intended recipient) but which become a bit heavy to scroll through when trying to follow the original topic of the thread on a slow connection."


I think this forum is now has grown so much because of its own success. It is now a lot to wade through and while it is all important, being able to get the gist of a thread would help me manage getting through it.

Dr Freeman's suggestion about an expanding facility would be great.

The one liners would still be visible and other stuff that has fallen off the radar for the time being could be sifted through.

Maybe suggesting work for others, but it is growing and one wonders how things will be in another month or so.

yours


J.
GT3a 1990 Failed Inter 1998, comb in 2000. HCC 2012
Started 24/52 Sof/Dac 27th October 2015.
1. Bloods 2 October 2015: AST - 165 (20-40), ALT - 265 (5-40), GGT 189 (5-50)
2, Bloods 20 November 2015: ALT etc normal; VL 19
3. Bloods 8 January 2016: AST - 40, ALT - 59, GGT 48 VL RNA UND
4. EOT 12 April 2016 - blood tests: all is well, CT scan: okay
5. AFP 11 June 2016: 4 ref< 11
6. VL July 2016: DET
7. Oct16 start treat - June17 UND
8. Jun 18, lfts okay, platelets a bit low.

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Last edit: by sabrecat.

VA in USA urged to invoke emergency powers 6 years 8 months ago #9202

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splitdog wrote: This whole thread should be deleted. All it will do is divide us, just as politics is doing in the US right now. ;)


This comment is in error on a number of levels. Firstly, most of my opinions are shared by most posters here, that is, that Gilead have been greedy and that FixHepC and its team are doing a fantastic job. I'm pretty sure that this is a common understanding. Secondly, there is nothing divisive at all about discussing the complexity of an issue rather than turning it into a black-and-white hate festival. From my point of view, the truly divisive comments are by people that express very aggressive hatred toward Gilead while at the same time buying that company's products that have been produced under licence. Criticism here is one thing, but if one truly hates the company, then one shouldn't be using its products.

I agree that politics is divided in the US, but the main reason for this is that voters are encouraged to think in simplified, childish terms that sees the difference between parties as choices between Good and Evil. And this is a result of shutting down debate when faced with an point of view you disagree with.

By considering both sides of the argument, I am encouraging readers to think about the issue, not to divide them. If they see my behaviour as being divisive, then maybe it is the education they received that needs to be looked at.

Screaming abuse, blocking ones ears, and calling for censorship is not useful behaviour in a complex and emotional debate..
G4, F4, cirrhosis.

Thank you to Gilead, Michael Sofia, and the terrific folk at FixHepC for making this adventure possible.

YEAR..... ALT..... AST..... GGT... FERRITIN........................................
2009....... 210..... 215..... 953..... 1400........... (Bad health, stupidity)
2015....... 60....... 45....... 150..... 360............. (Improved diet and health, FixHepC treatment)
2016....... 20....... 24....... 25....... 156............. (SVR 12)

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VA in USA urged to invoke emergency powers 6 years 8 months ago #9204

Free speech-can't have democracy without it. Calling for censorship is fine. Getting yor wish is not.
Mike
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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

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VA in USA urged to invoke emergency powers 6 years 8 months ago #9205

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Greedfighter wrote: Emilio, I totally agree but 200K vets x 90K is 18 billion! That buys a lot of private jets and hookers! :evil: :evil: :evil: GREEDIAD!!!!


Gilead did not factor in community outrage when pricing its goods in the US and this let them express their greed. After all, they are a business playing by the rules, not a charity.

But they changed their tunes and have responded in a number of other countries with a licensing compromise. You might even have bought their good through such channels. That they are playing hardball in the United States possibly tells us more about what sort of behaviour is permissible there, but I'm sure that intelligent lobbying will bring them around to a more acceptable pricing strategy in other countries (hopefully including the US).
G4, F4, cirrhosis.

Thank you to Gilead, Michael Sofia, and the terrific folk at FixHepC for making this adventure possible.

YEAR..... ALT..... AST..... GGT... FERRITIN........................................
2009....... 210..... 215..... 953..... 1400........... (Bad health, stupidity)
2015....... 60....... 45....... 150..... 360............. (Improved diet and health, FixHepC treatment)
2016....... 20....... 24....... 25....... 156............. (SVR 12)

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Last edit: by A.L.. Reason: Grammar

VA in USA urged to invoke emergency powers 6 years 8 months ago #9207

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mgalbrai wrote: ...Calling for censorship is fine. ...
Mike


No, it isn't.

Unless there has been a serious violation of community guidelines, calling for censorship is ignorant, vexatious and counterproductive.
G4, F4, cirrhosis.

Thank you to Gilead, Michael Sofia, and the terrific folk at FixHepC for making this adventure possible.

YEAR..... ALT..... AST..... GGT... FERRITIN........................................
2009....... 210..... 215..... 953..... 1400........... (Bad health, stupidity)
2015....... 60....... 45....... 150..... 360............. (Improved diet and health, FixHepC treatment)
2016....... 20....... 24....... 25....... 156............. (SVR 12)

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VA in USA urged to invoke emergency powers 6 years 8 months ago #9209

Free speech-you can call for anything you like. If you can't, then there is not free speech.
M
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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
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VA in USA urged to invoke emergency powers 6 years 8 months ago #9212

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A.L. wrote:
But they changed their tunes and have responded in a number of other countries with a licensing compromise.


Hi A.L.,

Thanks for your comments in your last post (#9202), I agree that we need to discuss both sides and understand where you are coming from on that.

Regarding your comment above, my understanding of the situation with the licensed Indian companies is that Gilead only went down this path when it became apparent to them that they would not be granted patent in India. At that point they approached the Indian pharma companies with licensing agreements in exchange for technical knowledge. This knowledge was not strictly required by the Indian companies but did allow fast tracking for sales into many potential markets of these companies. i.e. They could piggyback their products on Gilead testing and approvals and so only require minimal extra proof on their part.

Gilead were not doing this out of the goodness of their heart or to develop a generics market, it was done purely to salvage some return via licensing fees and in the hope of retaining some control of distribution.
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
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Last edit: by Gaj.

VA in USA urged to invoke emergency powers 6 years 8 months ago #9217

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I also don't have an issue with providing fair and reasonable reward for investment, either intellectual property or financial under patent laws. However, Gilead's excessive greed in this instance was part of my decision process to source my meds via the FixHepC Buyers Club which used non patent APIs from China.
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:
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VA in USA urged to invoke emergency powers 6 years 8 months ago #9221

A.L. wrote:

splitdog wrote: This whole thread should be deleted. All it will do is divide us, just as politics is doing in the US right now. ;)


This comment is in error on a number of levels. Firstly, most of my opinions are shared by most posters here, that is, that Gilead have been greedy and that FixHepC and its team are doing a fantastic job. I'm pretty sure that this is a common understanding. Secondly, there is nothing divisive at all about discussing the complexity of an issue rather than turning it into a black-and-white hate festival. From my point of view, the truly divisive comments are by people that express very aggressive hatred toward Gilead while at the same time buying that company's products that have been produced under licence. Criticism here is one thing, but if one truly hates the company, then one shouldn't be using its products.

I agree that politics is divided in the US, but the main reason for this is that voters are encouraged to think in simplified, childish terms that sees the difference between parties as choices between Good and Evil. And this is a result of shutting down debate when faced with an point of view you disagree with.

By considering both sides of the argument, I am encouraging readers to think about the issue, not to divide them. If they see my behaviour as being divisive, then maybe it is the education they received that needs to be looked at.

Screaming abuse, blocking ones ears, and calling for censorship is not useful behaviour in a complex and emotional debate..



What I meant was, we have a loving, mutual, trusting relationship here with everybody helping everybody. We are all after the same thing. But when you start putting politics in, lots of other things come into play. People's feelings can get hurt, and bonds can be broken fast. I have seen it countless times. I love to debate politics as much as the next guy, but at the end of the day, it would be counterproductive to our camaraderie and Hep C. Been there, done that. The internet is famous for 2 people liking the same 10 or 15 things in common, and all it takes is 1 thing to break that all up. It's not worth it to me. But by all means, continue. As an Independent, I am for freedom as long as it doesn't hurt anybody. And that doesn't include feelings. ;)
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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
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Last edit: by splitdog.

VA in USA urged to invoke emergency powers 6 years 8 months ago #9222

Gilead's price gouging presents a conundrum of sorts; Do we limit the amount someone can charge for a product? If so, it fast becomes a slippery slope. Where do we stop? I agree that something should be done, but it needs to be done carefully, and right. I am in no way sticking up for Gilead, read my sig.
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

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VA in USA urged to invoke emergency powers 6 years 8 months ago #9251

Gilead is getting away with this because HCV sufferers are stigmatized as doped up, inked up, locked up or screwed up in their youth. Many people think we somehow deserve this as punishment for past deviant behavior.
So, the rich can easily pay $100,000. The poor qualify for all sorts of patient assistance programs. The people in the middle, they are always getting screwed. Gilead based its price on what the market would bear, not research or healthcare savings. Yes, I could have bought Harvoni, but I would have had to sell or refinance our home on the verge of retirement and work until I was 77. But if you are dead or your quality of life sucks, why worry about retirement.
Imagine, Gilead comes up with a vaccine that will prevent breast cancer. It must be administered before age 10 to effective. They price the shot at $100,000, stating research costs and potential health care savings as justification.

How long would that fly?
The CEO would be drawn and quartered, probably within hours.
The Board would be crucified.

Mike
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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
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Last edit: by mgalbrai.

VA in USA urged to invoke emergency powers 6 years 8 months ago #9255

Gilead is getting away with this because HCV sufferers are stigmatized as doped up, inked up, locked up or screwed up in their youth. Many people think we somehow deserve this as punishment for past deviant behavior.


Sadly, I believe this to be true.
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 'In the slow lane'
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC
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