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power of 3 8 years 3 months ago #9744
| 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 The following user(s) said Thank You: Ariel |
power of 3 8 years 3 months ago #9746
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 The following user(s) said Thank You: Ariel | |
power of 3 8 years 3 months ago #9797
Keep 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 Go Gen 1a Peg/inf/riba 2012(!) stop @ Wk 43 potassium low +issues (rlps week 4 post tx, VL120,000) scnds eg. adenomas. pre sof/led VL 240,000 Fibsc F0 Day 25 <30 Day 32 UND Week 10 UND EOT UND ALT11AST17GGT19 SVR4 UND ALT10 AST16 GGT13 SVR8 UND ALT <9 AST16 GGT15 SVR12 UND ALT14 AST19 GGT12 Bili 5 EOT +18 ALT13 AST20 GGT9 Bili 5 EOT +21 ALT11AST15 Cured SVR12 Dysplasia Adenomas RemvdAug '16 SVR24 UND ALT11AST16 ColonoscopyClear Nov17 LumpectomyClear ‘18 LithotripsyCytoscopyBiopsy 4/18 | |
power of 3 8 years 3 months ago #9821
and here is the excellent interview, NZ Hepatitis Foundation congratulates Dr James Freeman on supply chain integrity this morning www.radionz.co.nz/national/programmes/ni...et-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 | |
power of 3 8 years 3 months ago #9836
| Such 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 |
power of 3 8 years 3 months ago #9862
It'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 | |
power of 3 8 years 3 months ago #9915
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 | |
power of 3 8 years 3 months ago #9917
| Article about yesterdays Radio NZ interview posted on the New Zealand Hepatitis Foundation social media page. Its a written article from Radio New Zealand. www.radionz.co.nz/national/programmes/ni...titis-c-buyers'-club SVR 24 |
power of 3 8 years 3 months ago #9919
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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 The following user(s) said Thank You: Ariel |
power of 3 8 years 2 months ago #10181
| SVR 24 |
power of 3 8 years 2 months ago #10185
Fantastic Tina Moving forward in beautiful Aretorea The lobbying you do is fantastic Sending warm greetings from Oz Gen 1a Peg/inf/riba 2012(!) stop @ Wk 43 potassium low +issues (rlps week 4 post tx, VL120,000) scnds eg. adenomas. pre sof/led VL 240,000 Fibsc F0 Day 25 <30 Day 32 UND Week 10 UND EOT UND ALT11AST17GGT19 SVR4 UND ALT10 AST16 GGT13 SVR8 UND ALT <9 AST16 GGT15 SVR12 UND ALT14 AST19 GGT12 Bili 5 EOT +18 ALT13 AST20 GGT9 Bili 5 EOT +21 ALT11AST15 Cured SVR12 Dysplasia Adenomas RemvdAug '16 SVR24 UND ALT11AST16 ColonoscopyClear Nov17 LumpectomyClear ‘18 LithotripsyCytoscopyBiopsy 4/18 The following user(s) said Thank You: Tina-Hill-facebook | |
power of 3 8 years 2 months ago #10204
| Thanks 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 |
power of 3 8 years 2 months ago #10918
Good news from Dunedin (NZ) that a doctor is discussing prescribing DAA's www.odt.co.nz/news/dunedin/373136/risk-t...stem-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 The following user(s) said Thank You: Tina-Hill-facebook | |
power of 3 8 years 2 months ago #10925
| That 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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