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TOPIC: Background info on Sussan Ley's announcement

Background info on Sussan Ley's announcement 5 years 10 months ago #5973

  • Seymour
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You are probably right Klhilde, but I think some credit is due to the tough negotiators within Government. Australia has a reputation for tough negotiation and we have seen it before. If the access is available for everyone, as has been described, you have to wonder why anyone in Australia would want to import their own medication after 1st March 2016. Can Australia maintain a buyers club serving the international market?
Diagnosed with the filth in 2002
Two unsuccessful battles in the interferon war of attrition
Almost beaten into submission between 2008-2014
Finally got the good stuff in 2015 - awaiting SVR
Currently releasing my inner activist. GRRRRRRR!
Last Edit: 5 years 10 months ago by Seymour.
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Background info on Sussan Ley's announcement 5 years 10 months ago #5974

  • klhilde
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Actually to the best of my knowledge the Buyers Club has never shipped outside of Australia.
It's my (possibly mistaken) understanding that Dr. Freeman negotiated with MonkMed.com specifically to handle international shipment of the REDEMPTION eTrials meds.

I'm more concerned about the website/forum going silent with nobody here to help the new people showing up, and no activity to keep currently active members engaged.

And actually, yes there is still potential need for generics in Australia ... we'll see when the details come out. But I bet many people would pay for their own second 12 weeks of Darvoni to avoid using Riba. And also if the standard treatment calls for 8 weeks people would be fools to not buy another 4 weeks out of their own pocket. We'll see.
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Background info on Sussan Ley's announcement 5 years 10 months ago #5987

  • Chapel
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New Zealanders will need generics for a while yet, an estimated 50,000 of us.I imagine the A$37 deal for Aussies will stir interest over here.
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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Background info on Sussan Ley's announcement 5 years 10 months ago #5988

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What are you saying Kevin? That our government shouldn't offer treatment to everybody because that will kill off our interest in getting them to people overseas? 'Cause that's kinda what it sounds like mate.

We never had to help anybody but ourselves to the generics in the first place you know. But we did anyway.

(And if I just reported Chapel's post to a mod it was a big finger accident. Sorry.)
Huon Valley, Tasmania
Hep C+ since 1980s
Genotype 1b
F3/4
VL 480,000
Started Indian Sof and Riba, BMS Dac (comp access) 28 August 2015
UND at 4 weeks
Finished treatment 19 November 2015
12 February 2016 UND SVR12
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Background info on Sussan Ley's announcement 5 years 10 months ago #5990

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No no, that's not what I'm saying. If you can get the meds for these prices go for it, by all means.

I'm simply pointing out Gilead's motivations. Gilead doesn't give a damn whether I live or die. Gilead doesn't care about any of us.

I am floored when I read people in various places singing Gilead's praises ...
* journalists talking up the compassionate access in the US seemingly unaware of just how few get it and that it's just a publicity stunt.
* or when we read of how generous they've been with pricing in Egypt when we know it's to keep control of that market to preserve the monopoly in the first world.
* or when they try to paint the generics contracts with Indian companies as compassionate when it was in fact to tie the hands of those companies in the face of the expected patent rejection there.

Everything Gilead does is calculated and it seems most frequently it's deceptive. I don't want anyone here to be suckered into thinking Gilead is any less evil just because Australia got a better deal. Australia got a good deal because Gilead wants to stop the discussion of generics anywhere in the first world.

I want to make sure that the generics discussion keeps going. I want to make certain that whether or not a few people got a reasonable deal they understand that Gilead is still evil.

I want to make sure that their evil scheme to make this site quietly disappear does not work.
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Background info on Sussan Ley's announcement 5 years 10 months ago #5992

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Well, in terms of people currently on this site, I think it will be a cold day in hell before any of us feel other than utter and complete loathing for Gilead.

I can tell you that in none of the Australian media I've seen has Gilead even been mentioned let alone held up as benevolent Big Pharma. I really can't see that playing well in this country. It's all been about whether the government should be given credit or if it's just political spin. Personally, at the end of the day I don't really care. "Heaven" to use the doc's analogy would have been to tell Gilead to take a jump we're going with generics for everybody. But that was never going to happen. It's not like the hep c drugs are the only patents they own. They're too powerful and we're too small. Your government is the only one who could fight that battle and have any chance of winning.

What did people want our government to do?

I think we have to look at this as an opportunity. As I said previously, this changes the zeitgeist. We can use this to change it more widely. People need to start saying to their governments "Hey why aren't you offering treatment to everybody like them! Why have you agreed to the outrageous demands of these drug companies!" What's more, because the deal covers all the drugs it will be interesting to see how it plays out. Maybe not as much a bed of roses for Gilead as you might think. Should we spend health dollars on genotype testing when we could just skip it and use Dac?

When life gives you lemons, make lemonade. This appears to be a bit sweeter than lemons. More like oranges.

Let's make orange juice.
Huon Valley, Tasmania
Hep C+ since 1980s
Genotype 1b
F3/4
VL 480,000
Started Indian Sof and Riba, BMS Dac (comp access) 28 August 2015
UND at 4 weeks
Finished treatment 19 November 2015
12 February 2016 UND SVR12
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Background info on Sussan Ley's announcement 5 years 10 months ago #5993

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Absolutely right Chester,

Lets hope that the Australian deal will set the starting point for the next round of price negotiations between Gilead and the national health services in UK, France, Germany, etc. This can only be a good thing.

As Kevin says, most certainly Gilead have done their math, and most certainly they are still not doing anyone any favours as far as their income stream goes. They are still going to walk away from Australia with their pockets full.

But the cost cap is an amazing opportunity for Australia to maximise the number of people who get treated.

Lets also hope that the deal is backed up by massive advertising campaign and a minimum of red tape for access.
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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Background info on Sussan Ley's announcement 5 years 10 months ago #5994

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Throughout my involvement with FixHep I have received extraordinary care by Dr James, Greg Jeffereys and the FixHep team. I have witnessed selfless effort to address the toll of HCV.

Many of us are of an age where we can painfully recall the cruel treatment meted out to HIV sufferers, the focus then being on the gay community. Individuals also waited for meds, and better meds, maintained themselves as best they could at huge personal cost and a horrifying toll. Finally, in the face of such inhumanity the collective mobilised themselves. An inspiring testament to our capacity as human beings – to look after each other.

Though HCV sufferers are greater in number we appear to have been less effective advocates of our cause – perhaps because due to our isolation in diversity and lacking a critical mass within a mutually supportive network, an active and existing subculture. It seems when individuals have “stumbled” upon an HCV forum – they have bonded in sharing their challenges with physical treatment and psychological alienation. However, the HCV experience being the primary basis of this bond – after successful treatment many individuals do just move on, some remain for a number of years and others longer. I imagine that this may be determined by the ongoing value of the shared experience and/or a desire to assist others.

Klhinde, my feeling is that individuals’ motivation to remain on this or any site is more likely to be based on the intrinsic satisfaction experienced around these issues rather than the sourcing of generics through Government agency. In fact the only occasion when I have seen a forum diminish has been as a result of interpersonal conflict or over controlling moderators. Though admittedly at no time have we been without the bonding dynamic of painful or absent treatment – so perhaps time will tell a different story.

I see a number of individuals here who feel strongly about the HCV cause and many of us know there is a long way to go before others throughout this global village have no need of treatment or some sanctuary. But if by some remote likelihood in the future; such support becomes sustained only by those remaining inflicted and this forum eventually winds up – no amount of wanting or anger against the greed which we experienced; will change how members lives’ demand or their spirit leads them.

Perhaps on a more pragmatic note; it seems it may be some time before everyone receives treatment; during which many mayl not wish to wait and there may always be some who wish to manage their health independently. Additionally, and more sadly numbers will re-generate whilst this disease is not managed globally; as is required for its ultimate containment.
Fem. Gen 1a.18.4 kPa. IL28b - CT. Cirrhosis 4B/c. MELD 11. Portal Hypertension. Ascites. Varices. (Gr.3). post surgical Coma 2011- Tx denied. 15/09 - INR 1.2 platelets 58 (150-450) albumin 32 (35-50) bilirubin 40 (2-20) ALT 183 (0-45) AST 281(0-41) GGT 39(0-45). Liver lesions AFP 16 <8.
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Thank you to Gilead, Michael Sofia, and FixHepC 5 years 10 months ago #5997

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Chester wrote:
Well, in terms of people currently on this site, I think it will be a cold day in hell before any of us feel other than utter and complete loathing for Gilead.

Please don't speak for all of us.

I am very grateful to Michael Sofia (the inventor of Sofosbuvir and after whom the drug is named), to Gilead who risked 11 billion dollars to buy and produce it, and especially to FixHepC, who are helping many people to get access to this medicament.

I am taking the drug that Gilead make and so far, it seems to be working. I got it for a very good price from these guys here. Believe me, I am not going to complain about anyone who is part of this chain of cooperation that might be returning me to health.
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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Background info on Sussan Ley's announcement 5 years 10 months ago #5999

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Seymour wrote:
GAJ wrote:
I share your concerns Paul, so we need to ensure that people are aware that not everyone caught it that way and that those of us who did have been typical Australian workers, taxpayers, parents, grandparents and valuable contributors to society in the often many decades since then.

G

Everyone is equally deserving of treatment, even people who used to, or currently inject drugs. There are no undeserving patients and we must be careful not to stigmatise people whose experience is different from ours. We all suffer the stigma of hep C because of its association with injecting drug use so let's not add to the stigma by using discriminatory language or suggesting that some people are more deserving than others because their experience is different.

Hi Seymour,

I agree. This is very poorly worded on my part. As an ex user myself, my intent was to say that drug use or non-use did not make someone more or less deserving of treatment and that we all have something to give to society as can be seen in the valued and caring people I have interacted with on this site. And that this needed to be conveyed to anyone intending to influence, and any being influenced by, divisive tactics such as heppers vs pathology costs. But yes, in cold light of day it it could be read as almost the opposite.

G
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:
Last Edit: 5 years 10 months ago by Gaj.
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Background info on Sussan Ley's announcement 5 years 10 months ago #6022

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klhilde wrote:
Actually to the best of my knowledge the Buyers Club has never shipped outside of Australia.
It's my (possibly mistaken) understanding that Dr. Freeman negotiated with MonkMed.com specifically to handle international shipment of the REDEMPTION eTrials meds.

I'm more concerned about the website/forum going silent with nobody here to help the new people showing up, and no activity to keep currently active members engaged.

And actually, yes there is still potential need for generics in Australia ... we'll see when the details come out. But I bet many people would pay for their own second 12 weeks of Darvoni to avoid using Riba. And also if the standard treatment calls for 8 weeks people would be fools to not buy another 4 weeks out of their own pocket. We'll see.

Suggesting that people could /should make their own decisions on what drug combination they need and how long their treatment should last is extremely dangerous practice and is the prime concern in the medical community regarding the buyers club. Treatment guidelines provide indisputable evidence based recommendations on which medication is suitable for patients depending on genotype, fibrosis, treatment history, comorbidity, etc. Nobody should undertake hep C treatment without the supervision of a suitably qualified doctor.
Diagnosed with the filth in 2002
Two unsuccessful battles in the interferon war of attrition
Almost beaten into submission between 2008-2014
Finally got the good stuff in 2015 - awaiting SVR
Currently releasing my inner activist. GRRRRRRR!
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Background info on Sussan Ley's announcement 5 years 10 months ago #6024

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Seymour wrote:
Nobody should undertake hep C treatment without the supervision of a suitably qualified doctor.
Nobody in Australia can legally buy or import any listed meds without consulting a doctor and getting a prescription. My GP refused to prescribe as he was not familiar with the treatment options but was happy to order tests. I then consulted a suitably qualified doctor (Dr Freeman) with the results and was prescribed the appropriate treatment.
M 61yo HCV+ ~ 30 yrs Gt1a F2 VL 223,000 ALT 54 AST 42 Tx start Sof/Dac 17Dec15.
SVR4 at 7Apr16 ALT 22 AST 22
SVR12 at 9Jun16 ALT 23 AST 25
Melbourne, Australia
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Background info on Sussan Ley's announcement 5 years 10 months ago #6025

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Who would you call a 'suitably qualified doctor' though? Apart from the public clinics who have had some experience already with those taking generics as well as overseeing pharma-sponsored clinical trials, and Dr J who would be arguably the most experienced GP in the country re the new meds, most GPs would have little to no experience supervising tx (mine certainly wasn't prepared to, but I was fortunate my public liver clinic specialist agreed)
GT1a since 1988, diagnosed 1990
F0, tx naive
VL 262,000 ALT 40 AST 26 GGT 13 Fibroscan 04/12/15 - 2.9
Started Mesochem sof/dac 12 weeks 01/01/2016
11/02/2016 - 6 weeks UNDETECTED
AST 26
ALT 26
Last Edit: 5 years 10 months ago by zhuk.
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Background info on Sussan Ley's announcement 5 years 10 months ago #6029

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More than anyone else, it's the accountants that are pushing for the shorter treatments. With the price of generics that is much less necessary.

Read the trial results for yourself, or read what Dr. Freeman himself has said on the subject in this forum. There are quite a number of incredibly well informed people here ... we've been reading for ourselves rather than cowering before authority.

I can tell you this for a fact: Four and three months ago respectively, neither my GI doctor in the US nor my GI doctor in Thailand were aware of the differences in treatment recommendations between the US establishment and the EU establishment. I told my specialists what was going on, not the other way around.

Edit: For clarification, this was in response to Seymour way up the thread.
Last Edit: 5 years 10 months ago by klhilde.
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Background info on Sussan Ley's announcement 5 years 10 months ago #6030

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zhuk wrote:
Who would you call a 'suitably qualified doctor' though? Apart from the public clinics who have had some experience already with those taking generics as well as overseeing pharma-sponsored clinical trials, and Dr J who would be arguably the most experienced GP in the country re the new meds, most GPs would have little to no experience supervising tx (mine certainly wasn't prepared to, but I was fortunate my public liver clinic specialist agreed)

GPs are not suitably qualified to manage treatment unless they have undertaken the ASHM s100 hep C prescribing course. Several hundred GPs across Australia have completed the course over the past few years and there is a course running in Sydney in March. It is exactly the same with HIV treatment. Only specialist GPs are qualified to manage issues like drug/drug interactions.
Diagnosed with the filth in 2002
Two unsuccessful battles in the interferon war of attrition
Almost beaten into submission between 2008-2014
Finally got the good stuff in 2015 - awaiting SVR
Currently releasing my inner activist. GRRRRRRR!
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