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- This topic has 43 replies, 10 voices, and was last updated 8 years, 10 months ago by Tina-Hill-facebook.
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30 January 2016 at 6:10 am #10790
Thanks for the good news James, can you please post the link for the radio interview when you get it so it can be shared.
I’m over the moon!
SVR 24
30 January 2016 at 6:23 am #10792That 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
31 January 2016 at 4:17 am #10843Keep the pressure on NZ
AWESOME work team NZ love your passion
Lobbying is a draining and sometimes most frustrating task. My letter to then PM Tony Abbot was hand delivered via a secret route and his reply indicated he had not read my letter
I disclosed my identity my degrees my interferon debacle my loss of income
I explained the matter of the burden to the health industry and the causal effect it would have in Australia to deny tx
He wrote back the most inane drivel
It was a personal letter not written by a staffer but by himself
It just made the hair on my neck stand up at his complete head in the sand retort.
Same type of reply from two other leaders here.
Lobbying is hard work when $$$$$$$ are involved at this level of greed. Also the scaremongering trying to con people into waiting eternally for the PBS that never came that’s been promised but hmmmm ve vill see!
Go NZ Go1 February 2016 at 1:15 am #10868and 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
1 February 2016 at 5:49 am #10883Such an encouraging interveiw for the NZ Hepatitis C population.
Nice to at long last to have endorsement from the NZHF for generic DAA’s providing the integrity of the supply chain.
Today is a good day for NZ.I think something that should be said is this is not only a good interview but also has hopefully allowed another entry into PHARMAC’s consideration for DAA management of Hepatitis C at a far better fiscal opportunity and similar cure results offered by other pharmaceutical suppliers.
Nice one to both speakers.
SVR 24
1 February 2016 at 3:13 pm #10908It’s a process.
Patients need doctors to be skeptical of any marketing BS. It protects us all.
While I know we are less marketing, and less BS, I do understand the need for caution.
When I spoke with Prof Gane last week he was, without a shadow of a doubt, one of the most switched on patient advocates I’ve ever talked to.
You guys are lucky to have him.
As the results flow in I expect the evidence will be allowed to speak for itself.
YMMV
2 February 2016 at 5:24 am #10962It 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
2 February 2016 at 5:57 am #10964Article about yesterdays Radio NZ interview posted on the New Zealand Hepatitis Foundation social media page. Its a written article from Radio New Zealand.
SVR 24
2 February 2016 at 6:16 am #10966It is a process, and I am happy with how it is going and pretty impressed with the speed of it from NZHF[/b]. 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.
Totally agree Hazel! it is moving with impressive speed – especially when you consider government process and decision making in New Zealand. Such a huge change in direction from the New Zealand Hepatitis Foundation and a positive one at that. On a personal note I’m rather delighted that this interview was in some way able to “flip the bird” to Gilead from NZ.
SVR 24
5 February 2016 at 7:33 am #112295 February 2016 at 8:52 am #11233Fantastic Tina
Moving forward in beautiful Aretorea
The lobbying you do is fantastic
Sending warm greetings from Oz5 February 2016 at 1:13 pm #11251Thanks Ariel
Its just baby steps atm but steps in the right direction nonetheless and now Hep C is getting the media attention bringing it into the spotlight at long last. For too long now its been swept under a rug like a piece of dust so big props to all those Kiwis getting the message out there. Its making a difference.
If any Kiwis haven’t yet checked out Hepatitis C NZ facebook page please head on over – they are doing a fantastic job spreading the word and while you are at it head over to the Hepatitis Foundations too.
Love from Dunedin
SVR 24
15 February 2016 at 1:53 am #11956Good news from Dunedin (NZ) that a doctor is discussing prescribing DAA’s
http://www.odt.co.nz/news/dunedin/373136/risk-two-tier-health-system-specialist-says
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
15 February 2016 at 7:38 am #11963That is awesome news.
At long last the genie is coming out of the bottle in New Zealand.Now its time to get the monitoring moved into the DHB’s so that the financial burden of private care is removed. At present these 13 patients (me included) have saved the SDHB approximately 1.5 million dollars within a few months.
SVR 24
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