NZ news - FixHepC

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16 May 2017 at 7:58 am #26067
Hazel
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- Guardian Angel
@hazel
Hi all.
Report from the bottom of the world. Has been a busy week for hep C in the news over here. Last Monday, Tuesday, Wednesday, we had coverage of a Govt plan to lower threshold from meld 15 to meld 12 for Harvoni, for G2-6- yes, i know!- and those G1’s too sick for V-Pak. About 45 people. Calling for submissions on Pharmac website.
Thursday, our local Hep C resource centre is closing : http://www.channel39.co.nz/news/otago-southland-hep-c-resource-centre-close
Friday, we had National Radio in morning, a dispute about access we have with the local hospital:
They said: http://www.radionz.co.nz/…/pressure-on-southern-dhb-to-help…, and I replied: http://www.radionz.co.nz/…/heptatitis-campaigner-slams-dhb’…
Saturday we had this great story about a local music icon: http://www.stuff.co.nz/entertainment/celebrities/92358051/the-chills-dying-front-man-martin-phillipps-is-given-miracle-reprieve-from-hepatitis-c–just-weeks-from-the-end-of-his-final-tour online,
and it was the front page story in the national Sunday paper.
And yesterday, this response from the excellent Russell Brown: https://publicaddress.net/hardnews/the-oncoming-day/

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
18 May 2017 at 2:40 pm #26106
Mnem
- Topics: 3
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- Guardian Angel
@mnem
This Hazel, is a truly impressive news post, and it looks like you are the driving force behind much of it. Thank you for all of your hard work.
The Stuff link to the story of their frontman Martin Phillipps really made an impression on me too, What a great musician, it is heartwarming to know that he is no longer dying of end stage liver disease since he got the DAAs.
Also I liked that link at the bottom of your post in which Russell Brown outlines the sense of pervasive hopelessness that is so easy to fall into when you are told you have HCV yet suffer the inequity of not receiving treatment. He writes with real humanity

G2, infected maybe in 1971?
Diagnosed HVnon-A non-B 1980s, revised to HVC 1990’s.
Treatment naive. Fibroscan & bloods all normal ranges.
Viral load 7million,
began Redemption trial4, 12-week generic Sof/Vel (Incepta) 2017. Week 4 UND, Week 12UND, SVR24
Thank-yous to my doctor for the script, to Jan at FixHepC for wrangling, and to Dr Freeman for courage.
Kia kaha e hoa ma!
30 May 2017 at 4:44 am #26218
Hazel
- Topics: 45
- Replies: 369
- Total: 414
- Guardian Angel
@hazel
I have been meaning to take some action on this topic for a few months, and now I have. Allison Beck, the local advocate whose centre closed recently, woke me up on this issue, as she had been banging her head against this for ages. She was the only person, in New Zealand, going into prisons regularly and educating about BBV risk, and hep C. So, for Allison! Generics could transform custody.
This was an easier experience- good interviewer.
http://www.radionz.co.nz/national/programmes/ninetonoon/audio/201845642/call-to-eradicate-hepatitis-c-in-prisons

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
30 May 2017 at 11:09 am #26221
Mnem
- Topics: 3
- Replies: 101
- Total: 104
- Guardian Angel
@mnem
Hi Hazel, Great advocacy in the radio broadcast you linked thank you. It is good to hear someone speaking up for all those living with HVC who are imprisoned in New Zealand. This country has one of the highest levels of imprisonment per capita, so bringing this to the fore in public discussion is particularly important. Thank you

G2, infected maybe in 1971?
Diagnosed HVnon-A non-B 1980s, revised to HVC 1990’s.
Treatment naive. Fibroscan & bloods all normal ranges.
Viral load 7million,
began Redemption trial4, 12-week generic Sof/Vel (Incepta) 2017. Week 4 UND, Week 12UND, SVR24
Thank-yous to my doctor for the script, to Jan at FixHepC for wrangling, and to Dr Freeman for courage.
Kia kaha e hoa ma!
30 May 2017 at 11:34 am #26222
coral
- Topics: 8
- Replies: 598
- Total: 606
- Guardian Angel
@coral
Hi Hazel, this is a great interview and you managed to get some really key points across. The infection rate within prisons is quite alarming but conversely the environment also lends itself to a high level of cure within the prison population. I also didn’t realise that only treatment for G1 is funded by Pharmac in NZ.

Hopefully the commitment to look at generic treatment options by Department of Corrections representative, Bronwyn Donaldson, will be followed through.
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