power of 3 - FixHepC

This topic has 43 replies, 10 voices, and was last updated 8 years, 9 months ago by Tina-Hill-facebook.

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20 January 2016 at 10:28 am #9898
Joy
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- Guardian Angel
@joy
O yes, excellent TV news clip, featuring Hazel and our very own SuperDoc.
20 January 2016 at 9:19 pm #9923
Tina-Hill-facebook
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- Guardian Angel
@tina-hill-facebook
More news from New Zealand however this is not good news its a bloody disgrace!. The Otago Hepatitis Resource Centre has had its funding slashed. This is mine and Hazels home town in which it is estimated there are 5000 living with HCV.

http://www.odt.co.nz/news/dunedin/370436/hep-c-centre-s-funding-loss-appals

SVR 24
20 January 2016 at 11:47 pm #9925
Hazel
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- Guardian Angel
@hazel
Great surfing, but bring your wetsuit, here in Otago, Ariel, come see us sometime! It is the Tasmania of NZ….

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
20 January 2016 at 11:55 pm #9926
Hazel
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- Guardian Angel
@hazel
and I want to say, people say I am ‘brave’- I don’t see it that way but the reason people do is because of the stigma, which I reject like I do racism and sexism and homophobia and inequality- I know there are people who think like that but they are nothing to do with me or my life. I am very lucky to be not risking my employment or family support or the respect of anyone who has any power over me- that is a freedom I know many haven’t got,. So f** ’em, bring it on. We should all be proud of surviving, not ashamed of contracting HCV.

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
21 January 2016 at 12:13 pm #9983
Ariel
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- Guardian Angel
@ariel
”hazelriannon” wrote:

and I want to say, people say I am ‘brave’- I don’t see it that way but the reason people do is because of the stigma, which I reject like I do racism and sexism and homophobia and inequality- I know there are people who think like that but they are nothing to do with me or my life. I am very lucky to be not risking my employment or family support or the respect of anyone who has any power over me- that is a freedom I know many haven’t got,. So f** ’em, bring it on. We should all be proud of surviving, not ashamed of contracting HCV.

Hear Hear! Oh the people that I learned all about from HCV and their bigotry
You said it so well Hazel
Yes I have a wetsuit and an armoured suit too
21 January 2016 at 12:21 pm #9986
Tina-Hill-facebook
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@tina-hill-facebook
Can we expect to see you here Ariel?

Heaps of surf and a room here if you need it

SVR 24
24 January 2016 at 1:17 pm #10284
Tina-Hill-facebook
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- Guardian Angel
@tina-hill-facebook
and so the saga continues……

I find it mad that anyone would think that Gileads asking price of $84000 is fair and that generic medication sourced through Fix Hep C could be a dud…. God give me strength I’m really beginning to lose my patience with these fence sitters.

http://www.stuff.co.nz/national/health/76120097/drug-companies-committing-legal-robbery-by-patenting-lifesaving-medicines

SVR 24
24 January 2016 at 3:44 pm #10293
Joy
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- Guardian Angel
@joy
Interesting article Tina. Discussed some issues I haven’t seen in the media before. Like:

“It was impossible for Gilead to sue any of Freeman’s patients because they were protected by patient confidentiality under Australian law.” (Some of us aren’t exactly confidential on this site)

“Intellectual Property lawyer Sebastien Aymeric said Freeman’s buyers club might be guilty of “contributary infringement” of patent law by giving people the means to get around it.”

“The secondary drugs were very difficult to make outside of large facilities found in Europe and America” said transplant physician Professor Ed Gane. He’s not very well informed is he.
25 January 2016 at 12:41 am #10325
Hazel
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- Guardian Angel
@hazel
Yup, I noticed that confidentiality thing too, I have given mine away! but the reality is- there is safety in visibility, and more safety in numbers. How would Gilead look if they went after me, what would be the point? Only would bring massive attention to the fact they need reining in. but the medical profession should be out there beside or behind Dr James in their droves, his head above the parapet should be followed by 100’s and where are they? some I know are doing what they can within their systems, but more needed now! what the f** are they afraid of?

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
25 January 2016 at 2:11 am #10335
Tina-Hill-facebook
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- Guardian Angel
@tina-hill-facebook
I have to say I am disappointed with the response from the leading medical professional’s – why couldn’t they say they applaud James Freeman rather than associate this story suggesting the medication is toxic and untested.

SVR 24
27 January 2016 at 1:57 pm #10551
Tina-Hill-facebook
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- Guardian Angel
@tina-hill-facebook
Allison Beck is an amazing advocate, she was a rock for me when I first found out I was HCV+.

I really hope the Otago Hepatitis C Resource Centre gets funding elsewhere.

http://www.dunedintv.co.nz/news/government-cuts-funding-hep-c-support

SVR 24
27 January 2016 at 2:56 pm #10559
Ariel
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- Guardian Angel
@ariel
Tina-Hill-facebook wrote:

Can we expect to see you here Ariel?

Heaps of surf and a room here if you need it

I am so in love with the land of the long white cloud and yes I would LOVE to come over…I have no idea where you are, but I have been all round the Nth Island and done the Marlborough Sounds I stayed out in a Bach on the Queen Charlotte Track it was as close to heaven as I can get without waves lol…..I am so in girls…Hazel and Tina I can get a cheapish fare to Windy Welly later in the year…..
27 January 2016 at 3:16 pm #10560
Ariel
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- Guardian Angel
@ariel
Tina! How disgraceful of the NZ govt to cut this funding. I know super wealthy people who have fancy holiday homes in NZ…grrrrrrr What is wrong with people!!!!!
30 January 2016 at 1:16 am #10755
Tina-Hill-facebook
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@tina-hill-facebook
More from New Zealand, Good work Julie

http://www.nzherald.co.nz/hamilton-news/news/article.cfm?c_id=1503366&objectid=11581116

SVR 24
30 January 2016 at 5:57 am #10786
Dr James
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- Guardian Angel
@fixhepc
RadioNZ are running the story at 0900 local on Monday.

I’ll be having a chat and then Prof Ed Gane will be on.

I’ve had constructive conversations with both the Hepatitis Foundation and Prof Gane this week which, along with the evidence provided by this forum and the brave patients that have spoken out, have helped reduce their perfectly reasonable concerns about the quality, efficacy and supply chain integrity of generics.

With any luck the upshot will be “In a perfect world PHARMAC will fund it, but in the meantime generics are a viable option provided you have confidence in the supply chain.”

Moving forward I’m hopeful that will mean less emails like this from NZ:

Hi Dr Freeman,

I emailed you regards to my husband xxxxx, and you phoned me.

I have seen xxxxx’s GP and spoken to his specialist. neither
will script the drugs here in xxxxx NZ. What do I do
now? His specialist his happy to monitor him on the drugs
tho. He also said there is a risk of them being fake, where
do I go from here?

YMMV
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