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- This topic has 24 replies, 8 voices, and was last updated 5 years, 10 months ago by Mar.
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26 April 2018 at 10:54 am #27901
Hi all,
Good day for me here with this page going live, had some wonderful support to get this rolling:
https://seedthechange.nz/hepc-action/
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
26 April 2018 at 4:41 pm #27903Excellent project and really great effort on your part Hazel. The site is also nice and well organized, the only thing you should look at is that one of the main menu pages (impact) gives an error. Best of luck in this endeavour
Making the world a better place – one patient at a time.
15 May 2018 at 2:43 am #28042Thanks Mar, tidied up now I think, but it is a work in progress.
I have made it into the news here again on the subject of drug pricing, US and NZ. This reporter has been great; it never says quite what I want , there is always something but it is all traction of some sort. She did these 2 stories a day apart.
In the first, one of my main motivators to study law finally was the prof in this story, with me and Trump, hmy: hmy: so glad about that.
In the second, I get a couple of different messages and I like that I am backing up what the former head of Pharmac says about exorbitant pricing. The third one, this is a really mainstream commentator railing against the global drug pricing situation and pointing the finger. For enthusiasts only!
https://www.stuff.co.nz/national/health/103850274/president-donald-trump-wants-to-build-a-drug-cartel–and-wants-new-zealand-to-pay-for-it?rm=m
https://www.stuff.co.nz/national/health/103857656/Can-Donald-Trump-really-change-the-cost-of-New-Zealand-drugs
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
16 May 2018 at 1:08 am #28044Great job Hazel exposing the reality of global pharma companies, and helping achieve the goal stated at the end of the third article “New Zealand will not be bullied”. Hopefully no country will be, including the United States.
Making the world a better place – one patient at a time.
29 July 2018 at 5:01 am #28379We finally have a plan to have Maviret for all (some clinical exceptions) here in NZ from October.
Quite a bit in the news with World Hep Day
https://www.odt.co.nz/news/dunedin/health/proposal-fund-hep-c-treatment-welcomedAnd we have had these posters up all around the country this week
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
29 July 2018 at 8:41 am #28380Great effort Hazel. It’s good to see some non accusatory, why should I bother messaging about why get tested for Hep C.
With the tools shortly to be to hand I can see NZ rapidly catching and overtaking Australia in your elimination efforts.
It is bad enough being beaten in the rugby. With a 2 1/2 year headstart weshould be so much further ahead here.
YMMV
29 July 2018 at 11:39 am #28382That was my motivator that got a laugh in a talk I did here on Friday,- come on! Great chance to beat Australia, even with a head start!
Must say though, Australians helped, more than a bit. Here is how good they look huge, also great as a handout size
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
29 July 2018 at 11:45 pm #28384Congratulations Hazel, your hard work and all the other volunteers finally paid off Congratulations to New Zealand, looks like it’s one of the very few countries destined to eradicate the disease in the short term.
P.S. The FixHepC designed poster looks awesome too
Making the world a better place – one patient at a time.
30 July 2018 at 3:50 am #28386Great work Hazel, so many great people in this community it really warms my heart. I was talking to my girlfriend about Dr James just the other day, i was telling her how he gets people medication so they can be cured and also has a forum where he answers people questions and worries and does this at no personal gain other than the fact he has helped people have a longer life, she was quite astonished. A selfless man and community
30 July 2018 at 4:57 am #2838830 July 2018 at 8:27 pm #28390Well said James_ mc85.
S
Diagnosed: 2001 GT1a , HCV since mid-70’s.
Biopsy 2010 F1
Fibroscan and Fibrosure 2018 F2Treated in trial 2010 with Dac/Peg/ Riba and Relapsed.
Resistance test 2017. Have Ns5a Rav Q30r/H58d enhanced from doing Dac.
Start Tx. Jan 18th/18 w/ Vosevi /Riba 12wks. plus 6 wks.Viekira Pak +Sof/Riba(From Dr Freeman @GP2U)
VL start: 1.6mill.ALT 125 AST 88
Wk. 4 Det @LLOQ <15.
VL Wk.8 UND Alt &Ast 22
Wk. 12 UND
EOT:UNDEOT+12 >>>UND (SVR12)! ALT11 AST13
Nov6/18 SVR 24!2 August 2018 at 2:38 am #28397More…
https://www.stuff.co.nz/national/health/105874756/Free-access-plan-for-revolutionary-drug-that-could-eliminate-Hepatitis-C-by-2030
And look! Anywhere, anyone could do this, or posters, would love to see in other countries, ask
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
2 August 2018 at 3:15 am #28398Very catchy and artistic, great job
Making the world a better place – one patient at a time.
12 August 2018 at 11:35 pm #28434Great job Hazel! You should be proud of your tremendous achievements!
14 December 2018 at 4:58 am #28787Dr James helping make noise for us here . Still unequal treatment, only vpak for geno 1 !’s
If it wasn’t for FixhepC, I don’t know what this country would have done. So many of us have been saved this way.
https://www.newsroom.co.nz/2018/12/12/359182/the-race-to-eliminate-hepatitis-c
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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