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TOPIC: Background info on Sussan Ley's announcement

Background info on Sussan Ley's announcement 2 years 4 months ago #5789

  • Seymour
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• There is $1b of government funding committed in MYEFO to treat 62,500 people over 5 years – it means the price ‘on average’ is well below that for current treatments.
• The $100,000 price noted by the Minister is I believe the “List Price” – i.e. the price prior to the negotiated discounts – it is not the price that govt will pay once discounts are applied, but for complex reasons is the one they will quote.
• There is absolutely no limit on how many people can be treated in any given year in terms of the government funding. Once the $1b threshold is reached the government stops paying for the treatment and the Pharmaceutical companies have to start paying for it. This is called the risk-sharing arrangement and they are locked into the arrangement as part of the negotiations.
• The funds for hep C treatment do not come directly from cuts to pathology or imaging as some media commentators today have suggested (E.g. Sue Dunleavy in the Daily Telegraph and the Northern Territory Times). The funds for the PBS listing have been committed in MYEFO.
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 2 years 4 months ago #5791

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There is absolutely no limit on how many people can be treated in any given year in terms of the government funding. Once the $1b threshold is reached the government stops paying for the treatment and the Pharmaceutical companies have to start paying for it. This is called the risk-sharing arrangement and they are locked into the arrangement as part of the negotiations.

If this is correct, they've agreed to fund all patients who fall past the $1bn/62,500 threshold...up to the total 230,000+?


Impressive...a world-first negotation re Gilead?
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: 2 years 4 months ago by zhuk.
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Background info on Sussan Ley's announcement 2 years 4 months ago #5796

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If this is correct, they've agreed to fund all patients who fall past the $1bn/62,500 threshold...up to the total 230,000+?


Impressive...a world-first negotation re Gilead?



Theoretically, but many of them will not seek treatment right away, or ever, for a variety of health and lifestyle reasons. So they probably wont be spending too much on this. In five years time competition will have forced the price down and it will be a whole different ball game.
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: 2 years 4 months ago by DrJames. Reason: Fixed the formatting separate quote from answer
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Background info on Sussan Ley's announcement 2 years 4 months ago #5800

  • Chester
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You haven't said how you know all this.
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 2 years 4 months ago #5815

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I really don't buy the idea that many people won't want treatment. Of course they will!
They'll be coming out of the woodwork in droves.
You'd have to basically be suicidal not to give it a go, especially now the community has formed so people can compare symptoms.
I'm not keen on being fobbed off with 8 weeks either.
F49HepC25ysGT1a
"mild"
Harvoni 12 wks
Brisbane, Australia
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Background info on Sussan Ley's announcement 2 years 4 months ago #5817

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Yes Seymour, source please,even a broad description would do.
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 2 years 4 months ago #5819

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flyingfox66 wrote:
I really don't buy the idea that many people won't want treatment. Of course they will!
They'll be coming out of the woodwork in droves.
You'd have to basically be suicidal not to give it a go, especially now the community has formed so people can compare symptoms.
I'm not keen on being fobbed off with 8 weeks either.

And I would guess the $1bn previously allocated (and largely unused) to peginterferon/riba treatment has simply been swapped over to the new DAA's.

As you say fox, if the Govt is expecting a slow, gradual take-up/demand for that 1 bil, they'd better think again.
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
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Background info on Sussan Ley's announcement 2 years 4 months ago #5821

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About an avalanche of patients, I dunno, I had expected thousands to buy through Buyers Club back in October but it was a relative trickle of tens of people, although it has grown to thousands world wide now probably, still a fairly low response. There seem to be many people who know they have Hep C but won't take action, even if it was free and in front of them. Many have been advised to wait. Members of this forum are the early movers.
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 2 years 4 months ago #5825

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... No doubt there are many people (mostly F0-F2) who do not know they have Hep-C.

Has anyone seen any figures on this?
Diagnosed Jan 2015: GT-3, 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.
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Background info on Sussan Ley's announcement 2 years 4 months ago #5829

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Chapel wrote:
About an avalanche of patients, I dunno, I had expected thousands to buy through Buyers Club back in October but it was a relative trickle of tens of people, although it has grown to thousands world wide now probably, still a fairly low response. There seem to be many people who know they have Hep C but won't take action, even if it was free and in front of them. Many have been advised to wait. Members of this forum are the early movers.

True enough mate. Also its easy to be complacent when your symptoms aren't particularly obvious - or if you attribute them to other causes.
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: 2 years 4 months ago by zhuk.
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Background info on Sussan Ley's announcement 2 years 4 months ago #5849

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Its true there are some people who just want to forget they have this thing and hide. They might be thinking they wont get as sick as some other people they know , besides they feel ok ... I was shocked when I tried to tell people when the club was open day 2, far as I know they havent taken it up and dont want to talk about it. Horses to water. Jill
Geno1a 35years fibrosis 2 or 3 different results from different hospitals ??
24weeks mesochem sof/led as unsure of fibrosis status.
currently UND. No bad side effects
Have svr12 ... waiting for svr 24
I now have SVR 36 weeks.
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Background info on Sussan Ley's announcement 2 years 4 months ago #5864

  • zhuk
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True that, Jill. When I was diagnosed in 1990 I was (coincidentally) in a pretty bad state mentally, and couldn't have cared less at the time about having hep. It took a lot of years to get to the point where I gave enough of a shit that I started to be concerned about my viral status. As you say, if people don't care or are in denial, no amount of info about impressive cure rates is going to sway them.
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
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Background info on Sussan Ley's announcement 2 years 4 months ago #5871

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Yes Zhuk sad but true. I can understand, thing is I was so worried the club would stop and the opportunity would be lost to them. Sometimes you just cant let an opportunity pass you by no matter how bad you feel. Anyway all you can do is let people know and wish them well.
Geno1a 35years fibrosis 2 or 3 different results from different hospitals ??
24weeks mesochem sof/led as unsure of fibrosis status.
currently UND. No bad side effects
Have svr12 ... waiting for svr 24
I now have SVR 36 weeks.
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Background info on Sussan Ley's announcement 2 years 4 months ago #5872

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Not giving a shit can be a way of coping with the fact that giving a shit would be pointless with no treatment options.
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 2 years 4 months ago #5881

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I understand your point but Iam talking about since fixhepc was started, and encouraging people to help themselves.
Geno1a 35years fibrosis 2 or 3 different results from different hospitals ??
24weeks mesochem sof/led as unsure of fibrosis status.
currently UND. No bad side effects
Have svr12 ... waiting for svr 24
I now have SVR 36 weeks.
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