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TOPIC: Global Hepatitis Summit

Global Hepatitis Summit 1 year 1 month ago #26759

  • Hazel
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I am in Toronto, having just attended the GHS. Had an info booth, presented a poster, and did a talk about medication pricing. Video link to come



I also made a compilation of stories sent to me by hepsters on facebook:
static1.squarespace.com/static/591fb1cfb...ories+book+FINAL.pdf
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
Last Edit: 1 year 1 month ago by Hazel.
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Global Hepatitis Summit 1 year 1 month ago #26760

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Excellent work Hazel, your dedication to the cause is very admirable.
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Global Hepatitis Summit 1 year 1 month ago #26774

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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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Global Hepatitis Summit 1 year 1 day ago #26932

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Hi, here is a 3 min version of this from last month, better for sharing-

And a handout I made to take - this is for anyone to use, show their doctor

File Attachment:

File Name: Doctorpage.pdf
File Size:1,541 KB
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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Global Hepatitis Summit 1 year 1 day ago #26933

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:)
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
Last Edit: 1 year 1 day ago by Hazel. Reason: submitted twice pl delete.
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Global Hepatitis Summit 1 year 1 day ago #26935

  • coral
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Thanks Hazel. Great work.
G1a probably early 1980's, Biopsy F1(2010), F2-F3(2015). VL 5+mill; 2+mill (2014) Tx naive. Accessed Sof/Led through Dr Freeman at GP2U and Buyers Club (lifesavers!!!)
Commenced tx 12/11/15. 9 wk: VL <15 Detected but LFT = Normal 12 week results: UND (Yay!) Due to slow response commenced Sof/Dac 4 Feb for 12 weeks. EOT @ 24 weeks 27 April 2016. (With thanks to Dr Freeman et al). SVR11 result: VL 1,950,000. It's back!
New tx 030916 (Viekira Pak, Solvadi, Ribavirin UND @ 111116. EOT 170217.
SVR12 and SVR 24...
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Global Hepatitis Summit 11 months 4 weeks ago #26937

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Hi Hazel,

I'm happy to see your presentation. I just want to bring to your attention that TRIPS article 60 allows for the importation of generics to any member nation for a 3 month supply.

"In accordance with Article 60, Members may exclude from the application of these procedures de minimis imports, i.e. small quantities of goods of a non-commercial nature contained in travellers' personal luggage or sent in small consignments."

I received my medication in the USA and I was not part of Dr. Freeman's Redemption trial; and I did declare it to customs. It is totally legal.
Gt 1a, F0, VL 6.5 million, AST 59, ALT 62
Started Twinvir 1/15/16
6 wk. labs, VL UND, AST 27, ALT 20
EOT labs, VL UND, AST 23, ALT 19
SVR 16, VL UND, AST 28, ALT 17
SVR 24, VL UND, 10/8/16
SVR 125, VL UND, 9/22/18
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Global Hepatitis Summit 11 months 4 weeks ago #26938

  • DrJames
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Hi Greedfighter,

Article 60 of the World Trade Organisation says members may, rather than must...

Many countries prohibit personal imports.

The FDA rules are here: www.fda.gov/forindustry/importprogram/im...basics/ucm432661.htm

And basically say it is illegal except if...

So the reality is that personal inportation is not a right in the USA. It is a discretionary power around the “except if...”

The FDA has been clamping down on it so as you’ve said before - if you are sitting on the fence get yours while the getting is good!
YMMV
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