You can..... make a difference

This topic has 40 replies, 13 voices, and was last updated 8 years, 5 months ago by Price.

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16 May 2016 at 11:21 am #17295
Tricia
- Topics: 1
- Replies: 38
- Total: 39
- Treatment Warrior
@tricia
The Desert Sun article,
I had to join facebook to read the comments and unfortunately I wasn’t able to post because of my recency with facebook (my f&fs will be gobsmacked that I’m finally on facebook now, thank fixhepc for that )…
but I don’t think it needed further comment anyway because Price and hazelriannon totally nailed it.

______________________________________

Something I’ve been thinking since I saw the link to here in the comments………
Fixhepc comes up grey with a question mark with Norton because it’s untested. Maybe the same with Mcafee etc . For me it was never an issue because we had already met the good doc when we were fortunate enough to find him when seeking safe and affordable DAAs, but possibly it may have some people unsure.

It’s not a problem on ipad, phone or anything that isn’t running these antivirus software.

reg nurse and wife of:
genotype 3 (probably since ’75), f4, cirrhosis, Tx naive
Oct ’15 – Dx hcc
Pre Tx — VL: 330,000……, AST 202, ALT 137, Bil 24, ALB 30
04/11/15 -Sof & Dac
30/11/15 -VL: 80……………., AST 28, ALT 18, Bil 12, ALB 32
06/01/16.-VL: not detected, AST 29, ALT 16, Bil 13, ALB 34
01/02/16 -VL: not detected, AST 28, ALT 16, Bil 13, ALB 36

.
17 May 2016 at 2:33 am #17330
Ariel
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- Guardian Angel
@ariel
Thanks so much Tricia the WHO 44 Pages is read. Took a while to get back to you
I have pulled some platforms for arguing the case for generics
If we look we see it’s the only viral epidemic with an increaaing linear gradient related to deaths by illness.

Then I note the spread and lack of testing etc in Asia and third world countries.

The projections are meagre in tx terms let alone eradication according to WHO objectives. Three mil treated by 2020

Fiscal issues which are our only pitch I feel. The individuals suffering goes without saying. The cost to community I looked at for Australia in earlier writing as I said, but to assess the global cost is difficult.
Generics clearly make these WHO objectives look like Noahs Ark. Our goal in a perfect world is the eradication of HepC.
There are holes here for me to construct my letter.

And

I’m keen for more information I send your links to myself too now Tricia.
Thanks again
When I look at the info from the EASL, and Hazels recent links and the info on here and in the global Hep orgs there’s a lot to pick through to make a very clean argument for generics globally. I have the Gilead vile information on that monopoly of genocidal type mentality. Yuk.
It takes time to construct a good letter especially as I plan to use a new format not using myself as a case study going in, but using a larger sample so I have more reading yet.
Tricia thanks again I will be a busy girl again
I’m glad you popped up here it’s coincidental that I was in conversation re my plans to hit the WHO. My health professionals thoughts were not the UN as well ha! I was thinking of them too
Ariel
17 May 2016 at 3:38 am #17334
Greedfighter
- Topics: 28
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- Guardian Angel
@greedfighter
In USA at least, I think the reluctance of media to push the Hep C generics may come down to the fact they are technically illegal to import. Someone on here posted a letter they sent to FDA asking if it was legal to import the meds. They were told no it’s illegal. Yet no one has been blocked. So it has to be spread via guerilla marketing, posting on the comment section of Hep C articles. etc. People can get the meds, although there is always the chance it could be seized. That was what I was told when I bought my meds, there is no guarantee.

It all comes down to how bad you want it. I was ready to fly to Dhaka and tape them to my leg.
18 May 2016 at 2:45 pm #17413
Tricia
- Topics: 1
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- Total: 39
- Treatment Warrior
@tricia
Ariel,
It’s excellent how you’ve put that post together.
The figure 2 graph just hits you doesnt it.
If we think about what’s been said about North American, and half of the people with hepc don’t even know they have it and the recommendation for testing of people born between 1945 – 1965, imagine how much more the hepatitis line would rise.

In another one of your posts you had the name of the regional director of WHO Western Pacific. Thanks for that because it gave me the idea to send a letter to all of the regional directors.
http://www.who.int/about/regions/en/

I really think that’s about all we can do with WHO, just ask them to do all they can in the view that the cost of medication is now the crisis etc. I think Greedfighter has hit on the crux the problem with it being all tied to legality and patents. For that reason I still think WHO are quite powerless (sadly, like many advocacy groups etc) and I doubt there’s much WHO can do apart from raising awareness and asking for reform.

reg nurse and wife of:
genotype 3 (probably since ’75), f4, cirrhosis, Tx naive
Oct ’15 – Dx hcc
Pre Tx — VL: 330,000……, AST 202, ALT 137, Bil 24, ALB 30
04/11/15 -Sof & Dac
30/11/15 -VL: 80……………., AST 28, ALT 18, Bil 12, ALB 32
06/01/16.-VL: not detected, AST 29, ALT 16, Bil 13, ALB 34
01/02/16 -VL: not detected, AST 28, ALT 16, Bil 13, ALB 36

.
19 May 2016 at 2:15 am #17453
pat1
- Topics: 5
- Replies: 334
- Total: 339
- Guardian Angel
@pat1
To James Ariel GF Hazel Tina Tricia Mike Gaj and all
I thank you for your efforts, research and activism. It was by reading a very small article in the Australian that I found out about fixhepc on November 2015. Promoting and intervention consumes much time and energy to reveal truths.
we can all make a difference

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 fixhepc
20 May 2016 at 9:07 am #17547
Tina-Hill-facebook
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- Guardian Angel
@tina-hill-facebook
Thanks for the article Ariel – it really kicks home about greed when mortality from HCV is on an upward trend even though there is a cure.

SVR 24
25 May 2016 at 12:04 am #17710
Ariel
- Topics: 3
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- Guardian Angel
@ariel
Hi friends
I’m listening to the live stream of the 69th World Health Assembly at this link:

http://who.int/mediacentre/events/2016/wha69/webstreaming/en/

I sent the WHO a decent letter, and am nagging them in my usual anonymous way as well I found a way to communicate live, but I feel very strongly about the apparent “celebratory” vibe that came from the HepOrg Newsletter where I live yesterday announcing: (and I know they’re govt funded so have to say these things but……

“Dear …..
This week is a momentous time in the course of history for viral hepatitis. At the 69th World Health Assembly (WHA) governments will decide whether to adopt or reject the Global Health Sector Strategy (GHSS) on viral hepatitis, which sets a goal of eliminating hepatitis B and C by 2030.”

This is exactly what I argue against! I’m arguing that the virus in 14 years can take off (even more than our current diagnosed 150/180mil) and without global equality in terms of testing, tx and follow up we sound like fools aiming for 2030. The goal by 2020 is to TREAT 3mil. I posted graphs earlier showing same pulled from the WHO. I’m going back to check the validity of this statement from my HepOrg too I don’t actually think full eradication was mentioned for 2030.

I say USE GENERIC medicines act NOW it’s IMPERATIVE!

Overall surely governments see the approaching medical and fiscal nightmare that’s going to result from NOT acting more efficiently and fast.
Another intention was to write to the UN well from the UN a Mr Michael Molar (sp?) is present as a guest delegate.

It’s hard to get people fired up here to really lobby loudly
The HepOrg apparently ran an awareness day but I only found out via a newsletter saying it had already happened
That’s not unusual here. Those who have thought “oh Australia yep they have the PBS” no it’s not that simple although it is available apparently I have had enough! After lobbying for the release of the DAAs for the last couple of years flat chat and been bullied been laughed at because of becoming my own Messiah and buying my cure I feel sickened when I visit clinic and people STILL ARE NOT GETTING TX not on pbs not from major hospitals.
This makes it very frustrating
We need to pull together globally
We need to be even louder.
Yesterday I watched and listened to Dr James presentation at the EASL. You most probably have heard it if not it’s here:

http://youtu.be/UcnIly5Ypcw

Okay I am leaving after this rant. Please don’t bite my head off anyone remember that I am a person too and although you might not like something about me you don’t know my story or me. Thanks!
I’m simply trying to lobby and I am alone in it. I refuse to align myself with any organisation as most receive govt funding etc and yes there is competing for attention etc out there (ridiculous!)
Ariel
25 May 2016 at 12:09 am #17711
Ariel
- Topics: 3
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- Guardian Angel
@ariel
Just checked
80% treated by 2030 is the “Aim” yet to be agreed
So the press release locally is incorrect I thought as much
Ariel
26 May 2016 at 1:47 am #17784
Debs
- Topics: 6
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- Total: 249
- Guardian Angel
@debs
Just a quick update to say I did speak to the journalist lady last week and she said the article was already done and anyhow she needed named quotes, which I didn’t want to do ( small balls) but will keep an eye out for the article.
However on a more positive note, spoke to the specialist nurse on Monday and from being the only one on generics at 8 weeks in, she said now there are “a few” on. So word is spreading up north in England, at least!
26 May 2016 at 2:21 am #17786
Hazel
- Topics: 45
- Replies: 369
- Total: 414
- Guardian Angel
@hazel
Regarding the comments sections on newspaper articles, I have had 2 hits from that in past week- excited emails from people, 1 in Phil and one in Canada, maybe they are seeing this post? Having my own name, being findable might help that but also, I just put in the words fixhepc not the link as people have ad blockers, and comments section moderators might remove links or see them as marketing. Easy enough for people to search the words.

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
27 May 2016 at 2:47 pm #17909
Price
- Topics: 6
- Replies: 231
- Total: 237
- Guardian Angel
@price
Tricia,
In June, the US is having a “National Strategy for the Elimination of Hep B and C” meeting. Two of the topics are called:
“Global Momentum for Viral Hepatitis Elimination” by Stefan Wiktor, Team Lead, Global Hepatitis Program, WHO
“An Australian Perspective on Hepatitis Elimination” by Benjamin Cowie, Director, WHO Collaborating Centre for Viral Hepatitis, The Doherty Institute, University of Melbourne.

P
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