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Look, lots of interesting stuff but from within NZ, and Buyers Club, I’d like to say:
1) Prof. Ed Gane is an ally- not an enemy. The NZ Hep Foundation has been giving advice to people for over a month and anyone visiting any of their sites would have found their way here because of the prominence it has been given, from people who work there who care deeply about rapid access. If Prof Gane didn’t approve of that, it would not stay up. It has. This is much better govt sponsored access to information than other countries have experienced. He said anyone who couldn’t wait should look at generics, and directly congratulated Dr Freeman. In voicing his concerns, on RNZ, it gives him, as an advisor, more leverage when advising Pharmac to fund DAA’s and get the best price. It is perhaps the unequal weight he gave to his concerns, rather than congratulations that has concerned people. Being interviewed live is difficult and it is easy to repeat one’s important messages.
2) I too always want to know where the money comes and goes from, but it is, as noted, not possible for him to responsibly fill his position without running drug company sponsored trials.
3) Dr Freeman soaks up an enormous amount of pressure from all sides on our behalf, which isn’t going to let up until the SVRs roll in. I don’t think we should add to it- by showing our full confidence in him to manage the testing, the media, the medical support, trials, and everything else. This thread puts further pressure on him, to defend or respond- another burden he doesn’t need from us. He has answered all of these things before, and speaks highly of Ed Gane in another thread.
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
It is a process, and I am happy with how it is going and pretty impressed with the speed of it from NZHF. The response I would expect of them to such an unconventional, dynamic situation is: 1) caution, with interest and a bit of investigation, followed by 2) cautious optimism – that was yesterday’s interview and has been evident in their willingness to signpost generics on their website and facebook page for the past month- and 3) optimism plus endorsement when SVR results come in, which is entirely as it should be, and can’t be hurried. His caution is predictable, in no way affects my complete confidence in Dr James.
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
I really wouldn’t worry at all about Prof Gane’s comments if you went through Buyers Club. He was making a strong case for people not shopping themselves on the internet and the sort of dangers that could come up. It is just a responsible warning. In the context of everything else he said, it was showing the difference between that kind of online medication purchase and the secure supply through Redemption and Buyers Club. The first part of the interview was Dr James and he addressed the same issues. SVR12 here is as secure as a govt purchased trial or treatment.
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
I thought this interview was a much stronger endorsement of Redemption/ Buyers Club meds as being absolutely reliable than the position statement. Prof Gane said that he congratulated Dr Freeman on the system and testing/ follow up. Both he and Dr Freeman made it clear as medical professionals their main concern was supply chain integrity, and that is what was being highlighted as well as efficacy.
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
and here is the excellent interview, NZ Hepatitis Foundation congratulates Dr James Freeman on supply chain integrity this morning
http://www.radionz.co.nz/national/programmes/ninetonoon/audio/201787577/australian-‘buyers-club’-helps-nzders-get-cheap-hep-c-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
Hepsters brea down the door
https://www.youtube.com/watch?v=7PCsBSB_SWc
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
That is brilliant news; but is the only sensible, responsible stance that can be made. It will be a great year for these doctors and specialists too when they embrace it.
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
my name is in those stories, I’m easy to find, get in touch if you want.
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
Hi Arron really glad you showed up here, I have been suggesting to all the journalists your patient group follow up this model, act quickly, from what I understand it will depend on whether the patent for Keytruda is invalid in some countries so generic is an option. You will need to know that, get a doctor and patient advocate, look at what is being done here, very best wishes.
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
saw this quote related to something else, puts me in mind of this topic for sure:
“When a true genius appears in your world, you may know him by this sign; that all the dunces are against him in a confederacy.”
—Jonathan Swift
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
Yup, I noticed that confidentiality thing too, I have given mine away! but the reality is- there is safety in visibility, and more safety in numbers. How would Gilead look if they went after me, what would be the point? Only would bring massive attention to the fact they need reining in. but the medical profession should be out there beside or behind Dr James in their droves, his head above the parapet should be followed by 100’s and where are they? some I know are doing what they can within their systems, but more needed now! what the f** are they afraid of?
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
teeth and gums…. mine are shot. in fact teeth, what teeth pretty much. 3 weeks into the first round of treatment on the old non peg barbaric interferon/riba in 99, I woke up one morning and all my front teeth were loose- never had been at all. went to get help/advice, they pulled them out, right then.I was 36. asked to get the drug company to pay for the treatment or some help, they said I couldn’t prove it was related. we have a med/dental school here, and one really good gum specialist. went to him, he made it clear while I had my mouth full of his hands it was probably some personal moral failing of mine, as he had tested positive for HCV antibodies but because he was a far superior person with stronger will, he had been able to clear it himself. Not keen on them at all now. My hair fell out both times on int/rib too, at least thinned drastically, and when I just did 4 weeks riba this time was coming out again, but has stopped now. But one big difference for us women to the guys I have found- the whole horror of monthly periods, infectious blood escaping into the world somehow- really different way for us to have to deal with normal women stuff, my body has been my family’s enemy.
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
need to fix hepc? no problem, life is very short, we can work it out…
https://www.facebook.com/thekitschbitsch/videos/2307067075264/?theater
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
and I want to say, people say I am ‘brave’- I don’t see it that way but the reason people do is because of the stigma, which I reject like I do racism and sexism and homophobia and inequality- I know there are people who think like that but they are nothing to do with me or my life. I am very lucky to be not risking my employment or family support or the respect of anyone who has any power over me- that is a freedom I know many haven’t got,. So f** ’em, bring it on. We should all be proud of surviving, not ashamed of contracting HCV.
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
Great surfing, but bring your wetsuit, here in Otago, Ariel, come see us sometime! It is the Tasmania of NZ….
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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