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#Latest NZHF magazine (Generic Ledipasvir) 6 years 7 months ago #14004

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Greedfighter wrote: SAVE $1112 a pill....No more hookers and private jets for these douchebags :cheer: :+1:


Wow! Talk about biting the hand that feeds you!

Further, if Gilead tripled their investment in buying Pharmasset for $11 billion and making about $30 billion to date (with Pharmasset getting hundreds of percent return on their investment), how much are the unlicensed manufacturers making on intellectual property that they have paid nothing for?

Sure, they are selling it a little cheaper than the licensed Asian manufacturers, but with a much smaller investment. Do you think they are doing it out of the goodness of their blessed hearts? As a social service?

I've criticised Gilead for their greed myself, but if you take a couple of seconds to think about it, their behaviour is absolutely unremarkable for this part of the business world. Everyone is out to make a buck and, if they think like you, spend it on hookers and private jets.

While you have your private hate festival, don't forget that Gilead is also the major actor in bringing this very useful drug to the market and doesn't deserve the one-sided vitriol it is getting. Please give the angry, ignorant man-of-righteousness routine a break, will you?
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: Italics

#Latest NZHF magazine (Generic Ledipasvir) 6 years 7 months ago #14005

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mgalbrai wrote: Gilead seems to feels comfortable outsourcing their components to Chinese manufacturers. I would imagine Incepta feels the same.


I'd hope so if they don't have the necessary technology themselves. They seem to behave like professionals from what we have seen so far.

I guess we will be much better informed after a few months as the SVRs roll in. I don't anticipate any shocks, to be honest.
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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#Latest NZHF magazine (Generic Ledipasvir) 6 years 7 months ago #14006

No A.L. I won't give it a break

I feel if you can only make money hurting or cheating people, then you should not be in business. There is a difference between luxury items and health care. Charging $100,000 for a watch you make for $1,000 is fine. But not the same thing with a life saving drug. There is a thing called GOUGING....a fair profit margin is perhaps 1000%, not 10,000%. Gilead is a perverse joke. You give it a break
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.

#Latest NZHF magazine (Generic Ledipasvir) 6 years 7 months ago #14007

Well, I might agree with you if we were talking about dental implants or a cure for male pattern baldness. There are people dying because they can't afford these medicines.
How much profit is enough?
As much as they can make and pay Irish taxes on? The government is to blame here. Not enough pressure is being applied. What if Salk had tried to make the equivalent amount? Something tells me things would have played out a bit differently.
The U.S. government could stop patent-infringing generic imports with the swipe of a pen. I believe that has not occurred because the powers that be seem to dislike the idea of totally restricting access to affordable, life saving medications, especially when the party suffering from such a policy has embraced the concept of price gouging at the expense of people's health.
Australia used the generic threat to negotiate a deal.
Gilead is a hedge fund. The rich get to live, the poor......
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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.

#Latest NZHF magazine (Generic Ledipasvir) 6 years 7 months ago #14008

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I think Prof Gane's comments about dodgy Ledipasvir are political, so that he is seen as super cautious about generics at the same time as he is supportive of FixHepC. The NZ Hepatitis Foundation facebook page (Prof Gane is on the board) has positive stories about FixHepC all over it.
He has raised this dodgy Ledipasvir theory in three interviews I am aware of. At first we were warned about generics from China and Bangladesh, now just Bangladesh.
If this was occurring - people taking ineffective Led - we would know about it by now. And of course the Prof must be aware that authentic Chinese APIs get the job done.
M, 57, Live in Wellington,NZ.
Genotype 1a diagnosed in 2013.
Treating for the first time since October 31 with Buyers Club Sof/Led. Thanks so much guys. Minimal side effects apart from sore throat at the start..
Viral load 5.4m when treatment started, Undetected at 4 weeks, 8 weeks, End of Treatment and 12-weeks post EOT. Yay!
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Last edit: by Chapel. Reason: grammar

#Latest NZHF magazine (Generic Ledipasvir) 6 years 7 months ago #14009

Hi Mike,

For the moment I think generics are safe. Too many Americans don't know about the availability from overseas, or are afraid of them. Like you, I told people I was going to get these generic meds, only to be told I was crazy. How could it work if it was so cheap? I told my Brother I was undetected and he was shocked! That is when he finally got it, and said good for you!

This opportunity will remain I believe for those who won't take no for an answer! But only until it gets to a point where it impacts Gilead's bottom line. Gilead has made statements basically accepting the idea that some people will go abroad for treatment.
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.

#Latest NZHF magazine (Generic Ledipasvir) 6 years 7 months ago #14042

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Thanks Gaj, for reorganising threads like this. I have tidied up my post here.

I will just say, he has recently said that people who are not F4 can afford to wait 5 years: Tina's story shows us all why that would be a criminal waste of the only life we have. You will notice she said, she has never told anyone these things- it is a gift from her, for other people to take strength from.
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
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Last edit: by Hazel. Reason: thread moved thanks

#Latest NZHF magazine (Generic Ledipasvir) 6 years 7 months ago #14046

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Yeah, I can understand its annoying when you start a thread and the replies always seem to end up going off the topic. So I just want to say a big thank you to Tina for telling her story to the world.

And as as far as I'm concerned, any doctor who says people with F4 can wait 5 years should be taken out and shot...

... with a US Army JetGun!
Diagnosed Jan 2015: GT3, A0+F0/F1. Fatigue + Brain-Fog.
Started Sof+Dac from fixHepC 10-Nov-2015. NO sides.
Pre-Tx: AST 82, ALT 133, Viral Load 1 900 000.
Week4: AST 47, ALT 58. VL < 15 (unquantifiable).
Week12 (EOT): AST 30, ALT 26, VL UND
Week16 (EOT+4): AST 32, ALT 28, GGT 24, VL UND
Week28 (EOT+16): AST 26, ALT 22, GGT 24, VL UND
Ever grateful to Dr James.

Relapsed somewhere after all that... Bummer!

Jan 2018: VL 63 000 (still GT3).
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#Latest NZHF magazine (Generic Ledipasvir) 6 years 7 months ago #14047

Yes,
The threads tend to take on a life of their own. For better or worse. At least we don't have an Evil Joy who can keep everything just the way she likes it.
It is totally unacceptable for the CDC to recommend all boomers get tested, but have other experts say you can wait for years for tx.
Frankly, the knowledge I was infected and there was a cure I could not access was the worst part of my personal HCV experience. I went public twice to air my frustrations in our state newspaper.
I didn't rate a picture though...
Way to go Tina!
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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Last edit: by mgalbrai.

#Latest NZHF magazine (Generic Ledipasvir) 6 years 7 months ago #14051

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:blush: :blush: :blush: :blush: :blush: :blush: :blush:

Well....with my usual ten thumbed approach and the good graces of Dr James I have finally managed to split this thread off from the one congratulating Tina so that we can celebrate her decision to go public with her story without being distracted by the issues in this one. Thanks Hazel.

Tina's celebratory thread can be found here: fixhepc.com/forum/media-news/873-tina-in...t-nzhf-magazine.html


Normal programming will now resume! :whistle:
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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Last edit: by Gaj.

#Latest NZHF magazine (Generic Ledipasvir) 6 years 7 months ago #14061

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On the subject of Prof Gane's comment about those who are not F4, all I can say is that I was not F4 two years ago and was considered to be able to wait. The cliff edge of cirrhosis and its complications that I fell over 18 months ago suggests that was not the case!!!
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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#Latest NZHF magazine (Generic Ledipasvir) 6 years 7 months ago #14063

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Saying people who are F4 can wait 5 years is pretty much criminally irresponsible...when there are medicines right here, right now that can cure them. That is just totally F'..D UP!
GT 2b; since 80's, no prior tx, sofosbuvir and daclatasvir compounded from API's at Kingswood Pharmacy in Sydney, started tx nov 6,2015, undetected at 4 wks, UND at 8 weeks, UND at 1 week after EOT, UND at 4 weeks after EOT and UND at 8 weeks after EOT. " I feel GOOD!! I knew that I WOULD!"
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#Latest NZHF magazine (Generic Ledipasvir) 6 years 7 months ago #14066

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"And as as far as I'm concerned, any doctor who says people with F4 can wait 5 years should be taken out and shot...

... with a US Army JetGun![/quote]"

I like it Vovoro but it was: treatment for F4 now, certainly, but everyone else can wait. We beg to differ. I have been F4 17 years but have seen and heard people suffering much more day to day than I did who show far less damage. I am aware that comment has personally distressed quite a few people who feel rubbed out by that analysis. I understand he is doing liver transplant work and sees the very sickest of us but it is disheartening that he doesn't seem aware of how limiting all the years up to that point are.
The experience, positions held and (justifiable) respect for Prof Gane's work means he is able to set the authoritative tone for treatment here in NZ, where there is not even a discussion about funding or supplying daclatisvir for us G3's, Harvoni only is the option for compassionate treatment, Why waste that money. He also says the total cost of treatment is $60-100k, well it might be for 12 weeks but you can double that for nearly all of us getting close to qualifying for compassionate access because we will nearly all be tx experienced and obviously cirrhotic so will need 24. I was told repeatedly (before I got my script from GP2U) i needed 12 weeks Harvoni, on the strength of Prof Ganes study, that it showed 97% success. But my category, G3 tx exp. was buried in brackets below all other results at 82%. I sent it back and forward and eventually had to print and highlight 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
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Last edit: by Hazel. Reason: grammar

#Latest NZHF magazine (Generic Ledipasvir) 6 years 7 months ago #14070

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totally agree, Greedfighter.
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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#Latest NZHF magazine (Generic Ledipasvir) 6 years 7 months ago #14072

Wow Hazel, that's shocking :ohmy:

GT3s struggling in UK, they're tending to put them on Int/Sofo/Riba ...
DAC is very expensive here, along with the other meds. it seems. The whole one treatment fits all concerns me too you know? we are all unique. One size may fit many, but what about the ones that don't fit one size, you know?

I can see things hopefully improving in the future, there are a few articles coming out re tailoring treatment to fit the individual patient, but if course, cost will still be an issue , but they're talking about SVR predictions, shortening some treatments but also extending others. No doubt they have their eye on shortening, but that could hopefully help patients needing other treatments to access too? That's the feeling I get coming from a few good Drs. who can think 'outside the box' and don't just amble along getting paid and just accepting health authority guidelines without question .

www.idse.net/Hepatitis/Article/04-16/Imp...alized-Therapy/35876

One poor patient relapsed in this trial, they said that patient could have benefited with another week of Sofo/Led - So feel for that anonymous patient and so grateful I have the chance to consider my own options.
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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