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TOPIC: Activism

Activism 3 years 4 months ago #19395

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cheese wrote:
I saw The Doors / Jim Morrison live in the old Boston Garden way way back in the day.

Wow. That trumps my having seen Bob Marley and the Wailers at the Sydney Hordern Pavilion, for sure. :ohmy:

Beware the columnist. Might I suggest you ask to see what they write before they publish?
Genotype 1a
Diagnosed in 2004, had HCV for all my adult life. Until 2016!!!!
Harvoni treatment, started 19 March 2016
4 week results Bilirubin 12 down from 14 pre treatment,
Gamma 25 down from 52, ALT 19 down from 63, AST 19 down from 47,
VL <15 down from a lazy 6 million or so

EOT Results
Bilirubin 10, GGT 18, ALT 19, AST 21, VL UND

12 Weeks post EOT
Bilirubin 11, GGT 16, ALT 22, AST 20, VL UND
Cured baby
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Activism 3 years 4 months ago #19397

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Good advice Beaches,

Am not social media savvy and tend to wear my heart on my sleeve.

Wow Bob Marley is a biggie, brings back fond memories of MO Bay (Montego) and Negril beach in Jaimaica back in the early 70"s. R/T flight from Miami to Jamaica a whopping $64 USD. :)
GT 1a
VL 4.9M
F0-1
Since Late 60's
Meds Cipla SOF/LED
Start June 7, 2016
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Activism 3 years 4 months ago #19399

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Remember this guy cheese? :lol:
GT1a; Got it some time in the 70's; Diagnosed @1976
Tx naive
METAVIR: A2-F2
SOT May 18, 2016: CMP: AST 162 ALT 241 VL 13000000
3 weeks after SOT: AST 27 ALT 31 VL 138
Reached EOT Aug. 10, 2016 / Received svr4 results Sept. 20, 2016: AST 22 ALT 24
Hep C RNA "NOT DETECTED"
AS OF 3/20/2017 ,Hep C RNA PCR "NOT DETECTED" THAT'S SVR24!
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Activism 3 years 4 months ago #19400

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Yes I do, remember, Matt even while being on all kinds of mind altering substances that shall remain unnamed B)
GT 1a
VL 4.9M
F0-1
Since Late 60's
Meds Cipla SOF/LED
Start June 7, 2016
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Activism 3 years 4 months ago #19402

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beaches wrote:
cheese wrote:
I saw The Doors / Jim Morrison live in the old Boston Garden way way back in the day.

Wow. That trumps my having seen Bob Marley and the Wailers at the Sydney Hordern Pavilion, for sure. :ohmy:

Beware the columnist. Might I suggest you ask to see what they write before they publish?

This is good advice, although if possible researching the columnist needs to be done in advance. A real journalist will never let anyone but their editor read or preview what they will publish in advance.

The other thing to bear in mind is that finding a so called 'progressive' news outlet is not the only option. Big Pharma pretty much owns the 'progressive' media in the US because they run ads with them continually. Most of the ads I see here in the US appear in progressive media outlets, so keep your options open.

There isn't much conservative media in the Boston area, but you might consider reaching out to them as well. We don't really care about what we think their politics are.The important thing is to get to media outlets with maximum market share to get the truth out (although I wouldn't advise going to another journalist until you know whether or not your columnist will go with the story).

You have a very compelling story to tell, and surely someone will want to tell it. Good luck, and thank you!
Failed Interferon 96', G1a, VL = 9 - 5.5 Million, F3/A3, AST 111, ALT 190, Generic DAA treatment Sof/Led (Mylan - India MYHEP LVIR) - 8 June, 2016
2 Week Results 20 June, 2016 AST 19, ALT 32
4 Week Results 06 July, 2016 AST 22, ALT 30, VL = 35
6 Week Results 20, July 2016 VL only = HCV RNA Detected, Non-Quantifiable <15
8 Week Results 04 August 2016, Labs, LFTs Normal, VL = UND
12 Week Results 31 August, 2016 LFTs Normal, VL = UND
EOT + 4 Weeks, LFTs Normal, VL = UND, "SVR4"
SVR12, 21 Nov 2016. CURED!!!
Last Edit: 3 years 4 months ago by fitz.
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Activism 3 years 4 months ago #19406

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Thanks Fitz
I have read a few articles by this columnist since I have been back and she is on the health beat. I'm not sure if I am using the right lingo labeling her as progressive but she seems to write some thought provoking stuff. if by some chance she gets back to me and is interested then it would have to come down to a face to face meeting. Maybe I am being naive but I trust my gut and intuition when I can look into someone's eyes and touch them as in a handshake to get a feel of what they are about.
GT 1a
VL 4.9M
F0-1
Since Late 60's
Meds Cipla SOF/LED
Start June 7, 2016
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Activism 3 years 4 months ago #19408

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Did you send her this?

onlinelibrary.wiley.com/doi/10.1111/liv.13157/full

Getting her to Google for "generic hep c medication" will turn up good stuff
YMMV
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Activism 3 years 3 months ago #19870

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Someone I know wrote this for tumblr, not a hepster but interested, and they have kept up with the background. It focuses on Gilead and is full of links, to this site and news/research. It could be shared, edited, posted, hosted or whatever anyone wants to do with it. There are a few versions starting to roll around on tumblr, but I have no idea how that works.


File Attachment:

File Name: Post.pptx
File Size:112 KB


File Attachment:

File Name: post.pdf
File Size:200 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
Last Edit: 3 years 3 months ago by Hieupham. Reason: add attached files
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Activism 3 years 3 months ago #19905

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Thanks to Hieu Pham for fixing an incompatible file. Anyone please take it, copy, change, do what you like !
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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Activism 3 years 3 months ago #19909

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Gilead - dealers in death.
Does anyone find these words offensive?
I find the actions unspeakably offensive, pernicious and odious
Genotype 1a
Diagnosed in 2004, had HCV for all my adult life. Until 2016!!!!
Harvoni treatment, started 19 March 2016
4 week results Bilirubin 12 down from 14 pre treatment,
Gamma 25 down from 52, ALT 19 down from 63, AST 19 down from 47,
VL <15 down from a lazy 6 million or so

EOT Results
Bilirubin 10, GGT 18, ALT 19, AST 21, VL UND

12 Weeks post EOT
Bilirubin 11, GGT 16, ALT 22, AST 20, VL UND
Cured baby
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Activism 3 years 3 months ago #19929

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Yes beaches ... it's all that ... I'd add "criminal" to that list as well. If any individual was responsible for allowing, no, CAUSING the deaths of so many innocents they'd be charged with conspiring to commit murder. Any complicit government or it's officials would be liable to prosecution ... not so much in today's world. Instead corporations are rewarded with huge some sums of money, tax breaks that allow them to skip out on paying their fair share of taxes, and accolades they don't deserve. They are shielded from prosecution by paid for government shills ... "Disgusting" is another word that comes to mind.

MK
GT1a; Got it some time in the 70's; Diagnosed @1976
Tx naive
METAVIR: A2-F2
SOT May 18, 2016: CMP: AST 162 ALT 241 VL 13000000
3 weeks after SOT: AST 27 ALT 31 VL 138
Reached EOT Aug. 10, 2016 / Received svr4 results Sept. 20, 2016: AST 22 ALT 24
Hep C RNA "NOT DETECTED"
AS OF 3/20/2017 ,Hep C RNA PCR "NOT DETECTED" THAT'S SVR24!
Last Edit: 3 years 3 months ago by Matt-Kenney-google.
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New Zealand Hepatitis Foundation - Personal Import & FixHepC 3 years 3 months ago #20791

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File Attachment:

File Name: NZHFnotice.pdf
File Size:414 KB

Not sure where to put this.... here will do. I was very pleased with this quote from the New Zealand Hepatitis Foundation's recent publication talkinghepC , Winter 2016, p7 and I think it is a really good endorsement beyond NZ, a kind of international reference, and contains useful information, so I typed it up... here it is pasted in, can be copied and pasted for use anywhere, also have attached as a full page sort of noticeboard/poster



“What if I do not qualify for the funded treatment?”
Personal Importation, NZ Hepatitis Foundation Clinical Director Alex Lampen-Smith discusses:
“In the 2016 Autumn edition of talkinghepC, we discussed personal importation as a means of accessing affordable generic versions of the lifesaving DAA’s.
Many people in New Zealand have personally imported treatment. In April 2016 Dr James Freeman, of the FixHepC Tasmanian Buyers’ Club, received a long-standing ovation following his presentation at the EASL conference in Barcelona, which presented the high cure rates, (>90 per cent) of cheaper generic medications.
The international liver specialist community recognises the way in which he is helping make generic DAAs available for sufferers of hepatitis C at a fraction of the cost: the approximate cost of 12 weeks of treatment is $2500 (NZ) . If you are interested in personally importing treatment please ask your GP to refer you to a specialist for assessment to ensure you import the correct combination and length of treatment”.
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: 3 years 3 months ago by Gaj. Reason: Adjust title
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Activism 3 years 3 months ago #20792

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What a gem in the already studded crown of Dr. James Freeman and FixhepC.
Thanks for posting it Hazel.

Matt
GT1a; Got it some time in the 70's; Diagnosed @1976
Tx naive
METAVIR: A2-F2
SOT May 18, 2016: CMP: AST 162 ALT 241 VL 13000000
3 weeks after SOT: AST 27 ALT 31 VL 138
Reached EOT Aug. 10, 2016 / Received svr4 results Sept. 20, 2016: AST 22 ALT 24
Hep C RNA "NOT DETECTED"
AS OF 3/20/2017 ,Hep C RNA PCR "NOT DETECTED" THAT'S SVR24!
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Activism 3 years 3 months ago #20798

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Hi Hazel,

Thank you for the article.
Reading it made reflect on the fact that when approaching HCV, the iceberg theory applies: many people see and talk about the tip of the iceberg (the 500 000 people that die every year) and even if the number seems high, few people talk about the bottom part of the iceberg (the 200 000 000 HCV patients).
Just a thought: treating HCV does NOT have only a single goal (saving life). There are also the goals to live a healthy life, enjoy the life, pursue your dreams (that might be related to family, friends, careers, passions, etc), being able to feel and act as a normal person...
The list could go on.

So why not talking also about the HCV tragedy that affects 200 million people?

Another reflection point when I was reading the article is that oftenly people think wrongly that HCV is not so critical because one can live another 20-30-40 years after becoming infected so that's a lot of time to live. But few people realize that only in the first part of this timeframe the symptoms are not so severe, later it become severe, so how "nice" can it be to live "a lot of years" with fatigue, headaches nausea (and other typical HCV symptoms) ?...

Thinking on these makes me feel very fortunate that I could get treated with generics.

Cheers,
RHF
In fiecare an HCV ucide peste 500000 oameni.Medicamentele generice pentru hepatita C functioneaza. Nu deveni statistica! Cauta pe Google “medicamente generice pentru hepatita C”.
HCV kills more than 500000 people every year. HCV generic drugs work. Don't become a statistic.
By sharing this Youtube video you might save someone’s life!
My TX: HEPCVIR-L[generic Harvoni]-India
SVR52 achieved
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Activism 3 years 3 months ago #20894

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I am not sure if this is the right place to post the following set of information:

Reading this article (RO language: www.radiomures.ro/stiri/peste-20-de-paci...ati-la-tg-mures.html ) one can see that in a certain place from Romania, 21 HCV patients were treated with the interferon free therapy and the bill to be paid by the healthcare system is slightly more than 1.150.000 US dollars. The news was also pointing that this is an extraordinary result!

With the same amount of money, more than 1.000 people could have been treated with generic medication for HCV. How extraordinary would that have been?

Going further, for treating 1000 patients with branded drugs, the RO government should pay more than 50 million $.
Now, looking at the FDA process to approve the usage of generic drugs (www.fda.gov/Drugs/NewsEvents/ucm508150.htm ) it is obvious that this will cost some money, yet the key question would be: would this approval process cost more than 50 million $ for HCV generic drugs? If not, the government could save a lot of money by considering the approval process for HCV generic drugs ....

I am aware that politics is puzzling, yet in the context from above it is about saving a lot of money (apart from saving a lot of lives which is priceless).
By the way, Gilead sits on more than 24bn$ ( as they say on their press release related to the financial results for Q2/2016 "....As of June 30, 2016, Gilead had $24.6 billion of cash, cash equivalents and marketable securities....") which means a lot of cash and equivalents. This does not sound good at all.... Have a look here: www.investopedia.com/articles/fundamental/03/062503.asp:
"Bad Reasons for Extra Cash
All the same, textbook guidelines should not be ignored. High levels of cash on the balance sheet can frequently signal danger ahead. If cash is more or less a permanent feature of the company's balance sheet , investors need to ask why the money is not being put to use. Cash could be there because management has run out of investment opportunities or is too short sighted and doesn't know what to do with the cash.

Sitting on cash can be an expensive luxury because it has an opportunity cost, which amounts to the difference between the interest earned on holding cash and price paid for having the cash as measured by the company's cost of capital. If a company, say, can get 20% return on equity investing in a new project or by expanding the business, it is a costly mistake to keep the cash in the bank. If the project's return is less than the company's cost of capital, the cash should be returned to shareholders.

Don't be fooled by the popular explanation that extra cash gives managers more flexibility and speed to make acquisitions when they see fit. Companies that hold excess cash carry agency costs whereby they are tempted to pursue "empire building". Top managers can fritter away cash on wasteful acquisitions and bad projects in a bid to boost their personal power and prestige. With this mind, be wary of balance sheet items like "strategic reserves" and "restructuring reserves". They are often just excuses for hoarding cash.

Even worse, a cash-rich company runs the risk of being careless. The company may fall prey to sloppy habits, including inadequate control of spending and an unwillingness continually to prune growing expenses. Large cash holdings also remove some of managers' pressure to perform."


Well, these were just some simple thoughts....

Cheers,
RHF
In fiecare an HCV ucide peste 500000 oameni.Medicamentele generice pentru hepatita C functioneaza. Nu deveni statistica! Cauta pe Google “medicamente generice pentru hepatita C”.
HCV kills more than 500000 people every year. HCV generic drugs work. Don't become a statistic.
By sharing this Youtube video you might save someone’s life!
My TX: HEPCVIR-L[generic Harvoni]-India
SVR52 achieved
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