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TOPIC: Background info on Sussan Ley's announcement

Background info on Sussan Ley's announcement 5 years 11 months ago #5884

  • sonix
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I was referring to zhuk's 1990 diagnosis. There were no treatment options then. I certainly have encouraged people to fixhepc.
One of my best friends is F4 Gt1a but still wants to wait for PBS. Horse > water > !=drink.
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 11 months ago #5887

  • zhuk
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Yep sonix...think 1990 was the first year there was a screening test for hep C anyway. And I was never any kind of viable candidate for the Int/ribas tx because of my psych history.

Sorry to hear about your mate...at F4 they have little time to wait for the PBS. I hope they come around to that view asap.
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 5 years 11 months ago #5890

  • DrJames
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You haven't said how you know all this.



I can vouch for Seymour. Please check out: fixhepc.com/blog/item/33-pbs-listing-almost-heaven.html
YMMV
Last Edit: 5 years 11 months ago by DrJames.
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Background info on Sussan Ley's announcement 5 years 11 months ago #5917

  • Paul-Jarman-facebook
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So what happens when the ALP and the crossbenchers block the $650 million cuts to health care currently before parliament ?

These bastards are using us heppers as an excuse to further their political agenda to water down the current system. I am sure Ray and his gang of thugs will rail against ripping funds out of the system to treat a bunch of ex junkies.

Cheers
Two time relapser.

SVR 4 achieved 12/16 at last
SVR 12 achieved 22/02/2017 The Bastard has been defeated :):):)

GT 3 - about 28 yrs with HCV
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Background info on Sussan Ley's announcement 5 years 11 months ago #5920

  • Gaj
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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
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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Background info on Sussan Ley's announcement 5 years 11 months ago #5923

  • Paul-Jarman-facebook
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I understand mate but my main concern is we have become political pawns. The LNP want to slowly dismantle the current system and will try and wedge labor over health care cuts to fund the DAA's , which should be opposed .
Two time relapser.

SVR 4 achieved 12/16 at last
SVR 12 achieved 22/02/2017 The Bastard has been defeated :):):)

GT 3 - about 28 yrs with HCV
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Background info on Sussan Ley's announcement 5 years 11 months ago #5924

  • Chester
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Seymour wrote:
<snip>
• 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.

No Seymour says these funds are separate. The doc says we can trust Seymour. That's good enough for me.

Look I was a whistleblower against the ACT Labor government back in the mid noughties. And I can tell you for a fact that if you think the most vile human filth isn't just as prevalent within the ALP as in the LNP, then you are seriously deluded. My cynicism dial is permanently set to 11.

But give credit where credit is due. This decision rocks.
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 11 months ago #5925

  • Gaj
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Hi Paul,

I understand that we have become pawns in the game and I suspect that it was deliberate strategy applied for several reasons and ends. However, as heppers, we come in many political flavours and colours so some will choose to fight this at a political level and others will not.

What we do all need to ensure is that the public for whose benefit this is being played out are aware of our story so they don't just write us off as "once junkies, always junkies" in which case everyone loses.

Edit: And part of that may include pointing out where various groups, be they political parties or professional associations or others, are using us for their own ends without regard for the impact on us.

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 11 months ago by Gaj.
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Background info on Sussan Ley's announcement 5 years 11 months ago #5926

  • Gaj
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And while I am happy to trust Seymour, the cuts happened basically at the same time as the funding. We are already making/disputing that link, the public won't have the benefit of Seymour's knowledge and I believe won't care about the distinctions.

Although they may care if we can point out they are being played for suckers when others do use that strategy.

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 11 months ago by Gaj.
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Background info on Sussan Ley's announcement 5 years 11 months ago #5928

  • Chester
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Ok I've just read the rest of the doc's blogpost and I see there is some suggestion the hep c treatments are being funded by the cuts.

But I'm not convinced that's entirely fair. Maybe it's the AMA who are using us as political pawns here. For starters, there is the money to fund this that would have previously been spent on interferon treatments. Secondly, if they're smart they won't be bothering with a whole lot of tests on hep c patients that are really no longer necessary. For most people, except the borderline cirrhotics, a fibrosure score should suffice to determine treatment length. Saves a bucketload on expensive fibroscans. As we all know, eot PCRs aren't really necessary. Then there's all the savings from not having to treat people with end stage liver disease. If you added up all the costs of those things alone, I'm sure it would go a long way to covering the cost of this programme.
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 11 months ago #5929

  • flyingfox66
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I'll be very interested to see if Fibroscans are a requirement. If you want one here in Brisbane its either pay up or 6 months wait (and that was before this announcement).
I am also a little concerned as to whether 8 weeks is enough for those without Fibrosis. I certainly have some Fibrosis but not much. There has to be some way of calculating who gets 8 weeks and who gets 12 I guess. And they better not try and make me take Riba or I'll rage at them :D

All that said I've made the decision to wait and see. Very grateful indeed to James Freeman for making the refund a possibility for those of us who just ordered. Thanks for being such an honourable and courageous man.
It's going to be a much merrier Christmas in my household.

It's very hard to trust these bastards thats for sure, but I don't see how they can back out of this deal now.
F49HepC25ysGT1a
"mild"
Harvoni 12 wks
Brisbane, Australia
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Background info on Sussan Ley's announcement 5 years 11 months ago #5930

  • mgalbrai
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Now it will interesting to see what the PBMs in the U.S. can negotiate. With our murky importation laws and no Dr. Freeman to pressure Gilead, the 3 plus million may have to continue to innovate or, as many promote, wait.
And get sicker...
And die...
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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Background info on Sussan Ley's announcement 5 years 11 months ago #5932

  • Chester
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I have to say the timing couldn't be better for me. In the unlikely event of me having to retreat, the PBS drugs will be available within weeks, saving me around 4 grand. OTOH, I'll have racked up close to 6 months of wellness before they become available and no tipping over into full blown cirrhosis. Which leaves me very content and without an ounce of regret for having spent the $1500 I did on generics.
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 11 months ago #5935

  • sabrecat
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Hi Chester,

I think the same - the funny looking orange capsules in a blister pack defeated THE WAIT.

By the time PBS pays I expect what is left of my liver would have seen the light of day after it passed out through my anus!

I am too old to be thinking 6 Plus months of good health that started November 2015 is worth trading for dollars and the THE WAIT.


P.S.

Feb 2016 appears to be a leap year - good things will happen.

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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Background info on Sussan Ley's announcement 5 years 11 months ago #5939

  • Seymour
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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.

People on this site are not typical of people with hep C. Many people have complex lives in which hep C is just one of a number of problems. Others are still using (or in prison and using) and realise they might be reinfected, or their lives are too chaotic to manage the treatment. Similar treatment for HIV has been available for 20 years and treatment rates are still below 50% in some jurisdictions (even though HIV is fatal for everyone without treatment). The challenge will be to encourage everyone with hep C to be treated, but I believe it will take at least 20 years, a major effort to tackle stigma and discrimination and a huge expansion in models of care.
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 11 months ago by Seymour.
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