Home › Forums › Main Forum › Media & News › Sunday NZ TV piece on FixHepC
- This topic has 11 replies, 9 voices, and was last updated 8 years, 6 months ago by Tina-Hill-facebook.
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5 June 2016 at 1:04 pm #18442
Can someone post a usable link to this Sunday programme from TV One please, it includes Dr Freeman commenting on the NZ situation, I saw it live tonight but it won’t let me watch it on demand,saying my time zone is wrong:
https://www.tvnz.co.nz/ondemand/sunday/05-06-2016/series-2016-episode-18
M, 57, Live in Wellington,NZ.
Genotype 1a diagnosed in 2013.
Treating for the first time since October 31 with Buyers Club Sof/Led. Thanks so much guys. Minimal side effects apart from sore throat at the start..
Viral load 5.4m when treatment started, Undetected at 4 weeks, 8 weeks, End of Treatment and 12-weeks post EOT. Yay!6 June 2016 at 12:53 pm #18507Heya Chapel
Ive just watched it On Demand – the format has changed in that you have to sign up with TVNZ on demand which is no biggie
SVR 24
6 June 2016 at 1:05 pm #18508Yeah I logged in and can watch other on-demand shows, but when I try to watch Sunday it says “wrong timezone,” despite my settings looking OK. I emailed them but it might be something to do with the IP address in my setup. Anyone outside NZ will have difficulty seeing it I think.
M, 57, Live in Wellington,NZ.
Genotype 1a diagnosed in 2013.
Treating for the first time since October 31 with Buyers Club Sof/Led. Thanks so much guys. Minimal side effects apart from sore throat at the start..
Viral load 5.4m when treatment started, Undetected at 4 weeks, 8 weeks, End of Treatment and 12-weeks post EOT. Yay!6 June 2016 at 1:31 pm #18510Definitely, that mob could teach the Chinese a thing or two about geoblocking. Apparently I need to change the residential address on my Apple account to NZ before Apple can even sell me the app!
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
7 June 2016 at 4:19 am #18556Here is a link that should work:
YMMV
7 June 2016 at 6:12 am #18559Good story … except the last few sentences of scaremongering … imported generics can be risky … really?
1983: Hospitalised with Acute non-A, non-B Hepatitis after ICU blood transfusion 3mths earlier => HCV GT2
22/02/16: (pre-tmt) ALT 61, VL 2.48 IU/ml Hepascore 0.32 (F1/2), fatigue, brain fog, bloating (Treatment Naïve)
10/04/16: (Start tmt) Sofovir +DaclaHep (SOF + DCV) by Hetero Labs in India
09/05/16: ALT 34, VL: NOT Detected 🙂 , FBG 11.9
17/6/16 FBG 5.7; PPBG (@14.22) 6.9 (@ 20.45) 7.1; BP 124/72
🙂 (Accu-Chek Mobile & Omron Auto BP Monitor) 🙂7 June 2016 at 6:46 am #18565It’s a great video. Chris Heazlewood looks and sounds really well.
gt 1a VL 6m
F2/3 FibroScan – 9KPa in 2011 and 7KPa in 2015
sof/dac 10 December for 12 weeks
pre tx alt 85 ast 51
4 wk alt 34 ast 31 UND <35
8 wk alt 29 ast 32 UND <15
12wk alt 25 ast 25 EOT 3.3.16
SVR24 UND KPa5.3 F0 in normal range
I am well
.forever grateful to fixhepc7 June 2016 at 9:05 am #18575That’s a nice piece of video material for which I would be willing to make a subtitle in RO and EN.
Too bad it is copyrighted. Does anyone has experience about asking the permission from a TV station to add subtitle and post it on youtube?
Regards,
RHF
In fiecare an HCV ucide peste 500000 oameni.Medicamentele generice pentru hepatita C functioneaza. Nu deveni statistica! Cauta pe Google “medicamente generice pentru hepatita C”.
HCV kills more than 500000 people every year. HCV generic drugs work. Don’t become a statistic.
By sharing this Youtube video you might save someone’s life!
My TX: HEPCVIR-L[generic Harvoni]-India
SVR52 achieved7 June 2016 at 9:53 am #18581Well listening to Chris reduced me to tears. It is so raw, not just the juice he is making.
There is a pathos about this whole thing like he says it is a subculture. Yes this made me very emotional. I think that last little downer bit has to be popped in for the networks ass to be covered, that’s all.
Ariel, BIG huge thanks for this share.7 June 2016 at 12:26 pm #18602rohcvfighter wrote:That’s a nice piece of video material for which I would be willing to make a subtitle in RO and EN.
Too bad it is copyrighted. Does anyone has experience about asking the permission from a TV station to add subtitle and post it on youtube?Regards,
RHF[/quoteHi RHF this is the earlier piece made by the same production team that is much longer than the follow up story (and just as good if not better) well worth the watch and to share on your network.
Regards
Tina
SVR 24
10 June 2016 at 12:31 pm #18812Re the Pharmac proposal talked about on this, I made a submission on that and today I got back the response to submitters report.
It sounds good for genotype 1 but not until after October at least while they train doctors and pharmacists. serious cases referred through clinics until then and no details about numbers or thresholds.
I am going to ask some more questions, but I am fairly pleased that my easily recognisable submission, which was a four page rant, has been nicely summarised as:
“One respondent was unsupportive of
the Gilead (Harvoni) proposal for
clinical, ethical and fiscal reasons.
The respondent considered the supplier’s behaviour has been
profiteering and that, in letting
patients become cirrhotic before
treatment, they create incurring
ongoing costs to the health system
” Pharmac response: Noted.So that gets spread around nicely in the public document. Doesn’t achieve anything but I like Gilead, behaviour and profiteering appearing together for submitters to read.
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
10 June 2016 at 11:16 pm #18852Hazel I had a wee chuckle when I saw that.
Now for another train of thought in relation to recent events in NZ and Australia with the TGA stomping its feet and Med Safe requiring more hoops for people to jump through to import medication. I strongly suspect that the same people/organisations that have complained about Fix Hep C to the TGA have also rattled chains here in NZ with Med Safe – what is of particular concern is how Med Safe has changed their stance practically overnight….
There has been a lot of talk from those opposed to generic importation as to the supply of fake medication which brings me to my next question….in my time being involved with the generic movement I haven’t heard of anyone in NZ receiving dodgy meds and I am pretty sure if that was the case we would of certainly heard about it by now.
I have it on good authority that a request to Med safe under The Official Information Act to explain the reason for these changes is on its way – must say its going to make for some interesting reading when it returns.
Tina
SVR 24
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