Hive Swarm! - FixHepC

This topic has 24 replies, 11 voices, and was last updated 8 years, 11 months ago by Vororo.

Viewing 15 posts - 1 through 15 (of 25 total)

1 2 →

Author

Posts
9 November 2015 at 12:42 pm #3552
klhilde
- Topics: 30
- Replies: 223
- Total: 253
- Guardian Angel
@klhilde
Current News Stories
Hit Them While They’re Hot

Senate Review of Gilead Pricing (Good eyes Joy!)
12/1 http://www.dailynews.com/business/20151201/maker-of-1000-hepatitis-c-pill-cared-about-profit-not-patients-senate-report-says
12/1 http://thehill.com/policy/healthcare/261661-bipartisan-senate-report-denounces-high-drug-price
12/1 http://www.wsj.com/articles/gilead-knew-hepatitis-drug-price-was-high-senate-says-1449004771

Hep C cases on the Rise in Bay County
11/28/15 http://www.newsherald.com/article/20151128/NEWS/151129331

And now Tommy Lee is Cured
11/24/15 http://classicrock.teamrock.com/news/2015-11-24/tommy-lee-cured-of-hep-c-say-pam
11/23/15 http://www.huffingtonpost.com/entry/pamela-anderson-tommy-lee-cured-hepatitis-c_56533587e4b0258edb321b7b

Pamela Anderson Stories …. Love her or hate her, potential for high traffic ***Hat Tip to Joy for this one!

11/10/15 http://www.newsmax.com/Health/Health-News/actress-Pamela-Anderson-cure-Hep-C/2015/11/10/id/701440/

11/9/15 http://abcnews.go.com/Entertainment/pamela-anderson-shes-cured-hepatitis/story?id=35074396
11/9/15 http://www.cbsnews.com/news/pamela-anderson-i-am-cured-of-hepatitis-c/
11/9/15 http://www.usatoday.com/story/life/people/2015/11/09/pamela-anderson-posts-nude-photo-claims-shes-cured-hepatitis-c/75455372/
11/9/15 http://www.people.com/article/pamela-anderson-hepatitis-c-cured
11/9/15 http://www.nydailynews.com/entertainment/tv/pamela-anderson-posts-nude-photo-hype-hepatitis-cure-article-1.2427977
11/9/15 http://metro.co.uk/2015/11/09/pamela-anderson-celebrates-being-cured-of-hepatitis-c-in-true-pammy-style-5489855/
11/9/15 http://www.tvguide.com/news/pamela-anderson-cured-hepatitis/
11/9/15 http://www.dailymail.co.uk/tvshowbiz/article-3309841/Pamela-Anderson-celebrates-successful-treatment-Hep-C-posting-saucy-nude-Instagram.html

11/8/15 http://www.usmagazine.com/celebrity-news/news/pamela-anderson-says-shes-cured-of-hepatitis-c-shares-nude-pic-2015811

11/7/15 http://www.medicaldaily.com/actress-pamela-anderson-cures-hepatitis-c-antiviral-medication-why-patients-need-360730
11/7/15 Instagram https://instagram.com/p/9w8WJZiSln/

Find any Hep C News links with comment sections? Post the links and mods will move onto this list.

Still working on format ideas … I’ll post more latter.

********************* Original Post *********************
Have I coined a new term?
Internet Hive Swarm: When an organized group of people from all over the world descend on a news story’s comment thread and post comments faster than the moderators can delete them.

Anyway, the article Paul posted which appeared to have a Gilead spokesman trying to scare people off of Dacatasvir has got me thinking.
I posted responses to that story in the comment thread, but I’m likely 4 days too late to be noticed.

We need to have people searching for news stories on Hep C, constantly, around the clock …. any story about drugs, treatments, government actions, etc., we need to see them quick. We need to get there before the crowd does.

Then we need to post a link to the story on this site. A moderator can move the link to the story to the top of the thread to keep people aware of the newest stories.

Then we need to swarm the comment threads with information about generics and their acquisition. Give enough info to get people’s attention and put up links to this site and Greg’s blog.

(Often comment threads won’t allow true links so you can express it as

fixhepc dot com
and
hepatitisctreatment dot homestead dot com/index.html#
or
blogs dot hepmag dot com/gregjefferys/

People need to be made aware:
1) that the generics are out there
2) that many people are using them
3) that they are legal to acquire in most countries
4) how to find information about getting them

It might also be of value to tell about the censure of this information on many hep c advocacy websites.

The listing of specific generic drugs by trade name, company name and country of origin would also be valuable. Does anybody have a list? A moderator could keep that list updated at the top of the thread too, so we can just cut and paste to our posts.

We need to be getting the word out to the whole world.
9 November 2015 at 4:03 pm #3567
Dr James
- Topics: 264
- Replies: 1,968
- Total: 2,232
- Guardian Angel
@fixhepc
Great concept. There are many more patients with HCV than moderators of forums. Our forum is clean due to the hard work of some great mods but you are completely right. There are so many patients with HCV than narrow minded, Pharma funded, mods.

I love your work!

PS: I’ve made you a mod here. Now for the Spiderman quote:

“With great power comes great responsibility”

YMMV
9 November 2015 at 5:11 pm #3571
mgalbrai
- Topics: 28
- Replies: 1,298
- Total: 1,326
- Guardian Angel
@mgalbrai
Hi Doc,
I am do my best to “clear the air” here in the U.S. about generic quality, suppliers and how to negotiate the whole series of steps from acquisition to the first dose. Many folks are intimidated by the process and brain washed by lawsuit-fearing doctors, big pharma and the government. I try to help them see it as a series of simple steps. It is working!
People up here are starting to get affordable treatment directly from a trusted supplier-Mesochem.
Thanks to you al!
Mike

Curehcvnow@gmail.com
http://forums.delphiforums.com/generichcvtx

G 1a F-1
Started tx 10/23/15 (Meso sof & led) ALT 48 AST 28 v/l 1.6 mil
11/17/15 4 wk lab ALT 17 AST 16 <15
11/18/15 Started Harvoni
12/16/15 8 wk lab ALT: 15 AST: 13 V/l UND
1/14/16 Fin. Tx
7/07/16 UND SVR 24
10 November 2015 at 1:48 pm #3606
Joy
- Topics: 12
- Replies: 206
- Total: 218
- Guardian Angel
@joy
Yesterday’s news Klhilde, but it will attract a lot of publicity – Pamela Anderson cured of Hep C:

http://abcnews.go.com/Entertainment/pamela-anderson-shes-cured-hepatitis/story?id=35074396
10 November 2015 at 1:51 pm #3608
tweakmax
- Topics: 18
- Replies: 238
- Total: 256
- Guardian Angel
@tweakmax
Yay! The more people we have using generics, the more we can add pressure to big pharma to lower their price! Good idea!
11 November 2015 at 5:25 am #3647
klhilde
- Topics: 30
- Replies: 223
- Total: 253
- Guardian Angel
@klhilde
Ummmm…. that was unexpected. I’m still not back to work so have some free time. My work days are generally 12 hours/day.

But I’ll try to be worthy.

Still thinking on the best format to do this.

But in the mean time I posted to the comments in the news story Joy linked to. Lasted less than two hours. Posted again and it was taken down almost immediately. Now the two posts to the ABC site, which although removed still showed up in my disqus account seem to have even disappeared from there! But they don’t appear to have blocked my disqus account in any other way.

Edit: They’re back on my disqus account but with the red “removed” tag.

Posted on the CBS version of the same story and post never appeared …. signed in using facebook.

I’m gonna have to figure out what’s in the posts that’s getting them booted, as I’m sure CBS and ABC, using two different comment systems, are not collaborating to keep discussion of hep c generics off their comment threads.

Edit: I did not use actual hyperlinks so that’s not what did it.
11 November 2015 at 6:27 am #3648
Gaj
- Topics: 29
- Replies: 1,402
- Total: 1,431
- Guardian Angel
@gaj
Some sites now remove dot type stuff also as they see it as circumventing their no links rules.

Perhaps a warm congratulations to Pam (or whoever), a comment about how expensive the drugs are and how that places them outside the average joe’s reach and then just a further comment about some people in australia setting up a buyers club to purchase hep c drugs at better prices. So no direct or indirect links at all but provides enough information for people to google for themselves. Sow the seeds and some will grow.

Edit: italics just to show the key words to include for a successful search, don’t use in your comment.

G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
12 November 2015 at 5:20 am #3706
Joy
- Topics: 12
- Replies: 206
- Total: 218
- Guardian Angel
@joy
I’ve been a busy bee swarming all over the internet, posting on every comment board I can. In particular replying to comments from people who disclose they have Hep C, but unlike Pamela Anderson, not the $$$ to pay for treatment.

Have completely blown my cover. But I really believe in what Greg and Dr James are doing.

Gosh there’s a lot of trash out there.
12 November 2015 at 6:53 am #3708
Joy
- Topics: 12
- Replies: 206
- Total: 218
- Guardian Angel
@joy
And so much misinformation:

Hepatitis C can be contacted sexually, particularly among people who have an HIV infection or STD.

http://www.techtimes.com/articles/105024/20151110/pamela-anderson-claims-she-is-cured-of-hepatitis-c.htm
29 November 2015 at 9:13 pm #4836
klhilde
- Topics: 30
- Replies: 223
- Total: 253
- Guardian Angel
@klhilde
Hep C cases on the rise in Bay County 28/11/15

http://www.newsherald.com/article/20151128/NEWS/151129331
29 November 2015 at 9:34 pm #4837
klhilde
- Topics: 30
- Replies: 223
- Total: 253
- Guardian Angel
@klhilde
And now Tommy Lee is Cured

http://classicrock.teamrock.com/news/2015-11-24/tommy-lee-cured-of-hep-c-say-pam

http://www.huffingtonpost.com/entry/pamela-anderson-tommy-lee-cured-hepatitis-c_56533587e4b0258edb321b7b
2 December 2015 at 12:35 am #4991
daveritch
- Topics: 0
- Replies: 1
- Total: 1
- Novice
@daveritch
klhilde wrote:

We need to be getting the word out to the whole world.

Hi folks,

I am a research scientist based in France. I have been following the developments on this site for several weeks because I am very interested in viruses and their molecular structures. I have been really moved by what is going on here and I want to help raise awareness. I have just modified my e-mail signature as follows:

…..

My Name / My Professional Address
(please take a moment to consider the gobal hepatitis C crisis. Visit http://fixhepc.com/blog.html)

I hope this might help, even if it is only in a small way.

Best wishes,

Dave
2 December 2015 at 4:09 am #5008
Joy
- Topics: 12
- Replies: 206
- Total: 218
- Guardian Angel
@joy
Thank you for your support Dave, it’s very encouraging.

To all the Hive Swarmers out there, the big news from the US Senate that Gilead is officially GREEDY, is a good opportunity to swarm the comments sections and/or share on facebook & twitter. Here are some links, but there should be many more in the coming days:

http://www.dailynews.com/business/20151201/maker-of-1000-hepatitis-c-pill-cared-about-profit-not-patients-senate-report-says

http://thehill.com/policy/healthcare/261661-bipartisan-senate-report-denounces-high-drug-price

http://www.bloomberg.com/news/articles/2015-12-01/gilead-used-revenue-driven-pricing-on-hep-c-drug-senators-say

http://www.reuters.com/article/2015/12/01/us-usa-healthcare-prices-idUSKBN0TK5HC20151201
2 December 2015 at 4:13 am #5009
Joy
- Topics: 12
- Replies: 206
- Total: 218
- Guardian Angel
@joy
And another from Wall St Journal, with comments section:

http://www.wsj.com/articles/gilead-knew-hepatitis-drug-price-was-high-senate-says-1449004771#livefyre-comment
2 December 2015 at 4:25 am #5011
crazy8
- Topics: 0
- Replies: 49
- Total: 49
- Recovery Champion
@crazy8
It took them 18 months of investigation to conclude that Gileads motives are driven by greed?, sheeyit, i came to that conclusion after a weeks surfing the net.

Still, it will apply a bit more pressure and that cant be bad.

GT 3, F3, Contracted 1993 Tx Naive
V/L 1,267,000 AST 67 ALT 65 6/10/15
commence Sof/Dac (Mesochem) 6/11/15
AST ALT normal 24/11 *
*V/L UNDETECTED 24/11*
Author

Posts