Hazel Heal - FixHepC - Page 14 of 14

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5 July 2016 at 5:02 am in reply to: First SVR is in. #20497
Hazel
- Topics: 45
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- Total: 414
- Guardian Angel
@hazel
Brilliant news Sir!

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
5 July 2016 at 2:38 am in reply to: Why I choose to help #20493
Hazel
- Topics: 45
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- Total: 414
- Guardian Angel
@hazel
Welcome and thanks, Geoff, for bumping this thread up, i had never seen it. Seems like quite a good place to put this, which has been bothering me for a while.

This is the first two points from the NZ Medical Code of Practice, everywhere has similar. all the points apply, but these are compelling.

All medical practitioners, including those who may not be engaged directly in clinical practice, will acknowledge and accept the following Principles of Ethical Behaviour:
1. Consider the health and well being of the patient to be your first priority.
2. Respect the rights, autonomy and freedom of choice of the patient.

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
5 July 2016 at 12:09 am in reply to: USA Today article: Help with the high cost of Hepatitis C drugs #20486
Hazel
- Topics: 45
- Replies: 369
- Total: 414
- Guardian Angel
@hazel
Doh! I do these kind of comments all the time…… but this time I ticked, share on facebook, thinking that meant comment visible on their facebook page. But no, of course I shared to my public timeline… doesn’t matter, in fact good because lots of people have shared it now, including a friend in the US just an hour ago, now I have someone wanting info. So, that is good but can’t push it 4 times a week or they will all get sick of 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
4 July 2016 at 9:41 am in reply to: NZ Hep Foundation under investigation #20437
Hazel
- Topics: 45
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- Total: 414
- Guardian Angel
@hazel
It seems it is the opacity that has prompted Charities Commission to take a closer look.

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
4 July 2016 at 9:18 am in reply to: NZ Hep Foundation under investigation #20434
Hazel
- Topics: 45
- Replies: 369
- Total: 414
- Guardian Angel
@hazel
”James-Freeman-facebook” wrote:

How on the one hand are you running a $2 million surplus but on the other hand closing down resource centres?”

It is confusing structures and different pockets of money. The Hep C resource centre that is closing down here gets no funding from the Hep Foundation- they are unconnected. There is also Hepatitis C New Zealand which is a different organisation again. The NZHF gets direct funding for screening and publications- not sure what else. Conferences etc.

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
4 July 2016 at 3:54 am in reply to: NZ Hep Foundation under investigation #20425
Hazel
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- Guardian Angel
@hazel
I just did an interview for it and all agreed there needs to be caution….and it must be a tough day for staff who have been doing what they can, but the publicly available figures there prompt comment from me.
$6m in real estate. Conference spending up from $21k to $115k, for Trustees, many of whom already have the conference fees covered by research money. $2.1 mil surplus, this year of all years, when there is actually something that money can be used for. They have done pretty much no media this year. The journalist asked what I would like to see done with the money. I said, why does there need to be a Hep Foundation? to see people cured of hepatitis- no other reason. What would be a good, measurable outcome for money well spent? people cured. What would be the best way to do that? Give the money to Dr Freeman and Redemption Trial as a fund for NZ’ers. Would save the country a fortune. $6 m of real estate is 2- 3 thousand lives.

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
4 July 2016 at 12:51 am in reply to: USA Today article: Help with the high cost of Hepatitis C drugs #20411
Hazel
- Topics: 45
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- Total: 414
- Guardian Angel
@hazel
I don’t know how all the spreading works- I do comments on this sort of thing all week long, get some hits, sometimes quite a few and occasionally people contact me through those. But this one, I had no sooner posted than it seems everyone on my fb friends are getting it as a notification, so it must just be because it has such a wide readership. Worth the doing. I mix it up depending on the story but have started saying: please tell everyone, we all know someone with hep c. I have also noticed that actual links get taken down often or don’t make it in so i say look up fix hep c as one word, look under Redemption trial etc. or look me up.

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
4 July 2016 at 12:02 am in reply to: USA Today article: Help with the high cost of Hepatitis C drugs #20404
Hazel
- Topics: 45
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- Total: 414
- Guardian Angel
@hazel
done!

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
3 July 2016 at 2:41 am in reply to: FixHepC – Party Playlist #20348
Hazel
- Topics: 45
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- Total: 414
- Guardian Angel
@hazel
Cheers Pat1 ! here is some more Dave Dobbyn- his welcome to visitors and migrants to NZ. Who knows, you might like it so much you will want to stay!
https://www.youtube.com/watch?v=cCq8657CBRc

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
3 July 2016 at 1:45 am in reply to: Hi everyone ! #20341
Hazel
- Topics: 45
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- Total: 414
- Guardian Angel
@hazel
Welcome Fhcn! Best of luck with your treatment start. everyone is different and sounds like you have quite a bit to deal with, but the DAA treatment is pretty smooth these days. Was a breeze for me. As for it working, the odds are extremely good.

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 July 2016 at 12:05 pm in reply to: 2A treatment begins #20239
Hazel
- Topics: 45
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- Total: 414
- Guardian Angel
@hazel
SShady, you have already had 6 days of that brew, and your viral load is already going to be absolutely slashed! Good luck.

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 July 2016 at 8:09 am in reply to: FixHepC – Party Playlist #20228
Hazel
- Topics: 45
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- Total: 414
- Guardian Angel
@hazel
Meg wrote:

His voice and spirit are extraordinary ! So happy you introduced him to us Hazel. Thank you.

The river is famous because nearly all the ponamu/ jade, that is the most prized thing, comes from there, bottom of the South Island. And he is singing about Tina’s great great grandfather, the most famous warrior Chief of the 19th or any century, Te Rauparaha, going down there and taking loads of ponamu off the locals.

Here is something different for people doing ribavirin: Insomnia
https://www.facebook.com/RossKempFanClub/videos/10153374015231386/?pnref=story

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 July 2016 at 2:49 am in reply to: New Zealand reacts to Medsafe #20208
Hazel
- Topics: 45
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- Total: 414
- Guardian Angel
@hazel
Here is Allison from our local hep C resource centre, which has had its funding cut. This was done at very short notice, (she has missed some genotypes, lol) but good job!. She has been doing this for years on virtually minimum wage, she used to get invited to the higher level strategy meetings but asking questions like- hello- what about daclatisvir- (which is virtually unheard of here)- and other inconvenient things, she has only about 3 months left until closure.

And an update on the Medsafe story in this article: Allison, Tina and I have been talking direct to some doctors here and although the wording of the accompanying letter is off putting, they seem happy to sign the necessary letter, that is specific to Redemption. There are only 2 versions; that one and one for all other suppliers and in fact any other medicine. The Redemption one gives them confidence about their patients using their prescription for this supplier only, which is what most doctors obviously prefer. Great job FixHepC getting this set up as we can point to it as a pretty strong endorsement of this supply chain.

http://www.dunedintv.co.nz/news/hepatitis-c-drug-funding-applauded

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 June 2016 at 8:50 am in reply to: Another Success Story, Geno 1a #20158
Hazel
- Topics: 45
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- Total: 414
- Guardian Angel
@hazel
Fifth attempt! Panamajo, it is tough cookies like you that get the research done for the rest of us. You did it! very encouraging, a friend is on fifth go too.

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 June 2016 at 1:04 am in reply to: Mom I am infected with HCV #20123
Hazel
- Topics: 45
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- Total: 414
- Guardian Angel
@hazel
Like RHF, I read Price as just normalising the virus. That is how I see it, and live it etc, but I know I am lucky in my situation and the stigma does upset me- for other people. I do see how it affects people and particularly affects all our health care. I have inadvertently offended people with my own experience of it, but it is mine- I don’t feel like apologising for how it is for me, (and I am happy to apologise for almost anything most of the time!) after all these years of fronting it, but I know like everything I just happen to be on a certain spot on a spectrum about stigma. We all have our own stories and they don’t have to be the same. I do think it can be educative- what stigma do we unconsciously apply to others, for whatever reason?

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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