Welcome, Guest |
TOPIC:
Background info on Sussan Ley's announcement 8 years 4 months ago #5884
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 The following user(s) said Thank You: poodle | |
Background info on Sussan Ley's announcement 8 years 4 months ago #5887
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 | |
Background info on Sussan Ley's announcement 8 years 4 months ago #5890
I can vouch for Seymour. Please check out: fixhepc.com/blog/item/33-pbs-listing-almost-heaven.html YMMV The following user(s) said Thank You: Seymour | |
Background info on Sussan Ley's announcement 8 years 4 months ago #5917
| 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 |
Background info on Sussan Ley's announcement 8 years 4 months ago #5920
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 | |
Background info on Sussan Ley's announcement 8 years 4 months ago #5923
| 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 |
Background info on Sussan Ley's announcement 8 years 4 months ago #5924
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 The following user(s) said Thank You: Gaj | |
Background info on Sussan Ley's announcement 8 years 4 months ago #5925
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 | |
Background info on Sussan Ley's announcement 8 years 4 months ago #5926
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 | |
Background info on Sussan Ley's announcement 8 years 4 months ago #5928
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 The following user(s) said Thank You: Joy | |
Background info on Sussan Ley's announcement 8 years 4 months ago #5929
| 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 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 |
Background info on Sussan Ley's announcement 8 years 4 months ago #5930
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 This email address is being protected from spambots. You need JavaScript enabled to view it. 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 The following user(s) said Thank You: zhuk | |
Background info on Sussan Ley's announcement 8 years 4 months ago #5932
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 | |
Background info on Sussan Ley's announcement 8 years 4 months ago #5935
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. | |
Background info on Sussan Ley's announcement 8 years 4 months ago #5939
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! | |
Time to create page: 0.109 seconds