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TOPIC: X-post BMS Looking for people to go public

X-post BMS Looking for people to go public 2 years 3 weeks ago #9670

  • Chester
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Hi Everybody,

I've had a couple of conversations with a woman from BMS. They are looking for people (ideally one from each state) who will talk to the media about their Hep C story in the lead up to the PBS launch. Initially, she thought it would be OK to do it anonymously, in which case I was prepared to do so. But after further consultation, she said the media want to be able to put a face to a name and I am not prepared to go there.

This is the deal:

- you need to be Australian
- you need to have treated or be looking to treat when the drugs become available on the PBS
- they do not care if you have treated with generics including if you've used sof/led rather than Sof/Daclatsivir (to which my response was "oh you guys don't fight dirty enough" :lol: ). Or, as I said, you can be someone looking to treat.

They just want to know stuff like what it's like having HCV and, if you've already treated, how that's worked out for you. The aim seems to be pretty much straight up public education.

I also suggested they might want to speak with the doc to which she was also amenable. But I'll leave that up to you doc. They are conscious of the fact doctors who will be prescribing under the PBS need to be educated too.

I have actually been pretty impressed by them. They seem refreshingly non-greed oriented in their approach. OTOH as noted above, maybe that's part of the reason they're being screwed over by Gilead just like everybody else.

I do urge you to consider all the implications before going public. After all, you can never go back. I know they are specifically looking for people from NSW and the ACT. As emilio's already "out" I'll PM him if he hasn't replied to this thread in a day or two. But please register your interest even if you are from other states.

Anyone willing to do this, if you can either PM me or express your interest here and I'll PM you so I can give you her name and phone number.

We've got about a week to get it together.

As I couldn't decide whether I should put this in Australian PBS Listing or Media and News, I'll try and cross post this to the former if it lets me so that it reaches the widest possible audience. If not, could a mod possibly do it? Ta.
Huon Valley, Tasmania
Hep C+ since 1980s
Genotype 1b
F3/4
VL 480,000
Started Indian Sof and Riba, BMS Dac (comp access) 28 August 2015
UND at 4 weeks
Finished treatment 19 November 2015
12 February 2016 UND SVR12
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X-post BMS Looking for people to go public 2 years 3 weeks ago #9698

  • A.L.
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Chester wrote:
Hi Everybody,

I've had a couple of conversations with a woman from BMS. They are looking for people (ideally one from each state) who will talk to the media about their Hep C story in the lead up to the PBS launch. Initially, she thought it would be OK to do it anonymously, in which case I was prepared to do so. But after further consultation, she said the media want to be able to put a face to a name and I am not prepared to go there.

This is the deal:

- you need to be Australian
- you need to have treated or be looking to treat when the drugs become available on the PBS
- they do not care if you have treated with generics including if you've used sof/led rather than Sof/Daclatsivir (to which my response was "oh you guys don't fight dirty enough" :lol: ). Or, as I said, you can be someone looking to treat.

......

I have actually been pretty impressed by them. They seem refreshingly non-greed oriented in their approach. OTOH as noted above, maybe that's part of the reason they're being screwed over by Gilead just like everybody else.

I do urge you to consider all the implications before going public. After all, you can never go back. I know they are specifically looking for people from NSW and the ACT. As emilio's already "out" I'll PM him if he hasn't replied to this thread in a day or two. But please register your interest even if you are from other states.

....

I will second Chester's suggestion to remain anonymous. The producers get all of the glory in their world and pay nothing for your public naming, while you can never ever reconceal yourself.

There is nothing to gain by identifying yourself, and I suggest it would be better to exercise your sense of cynicism and self preservation when dealing with any kind of media than to be seduced by their idea that, in being named, you are somehow doing yourself and the world a favour.

There is no room for naivety when dealing with these types.

(Who is BMS anyway?)
G4, F4, cirrhosis.

Thank you to Gilead, Michael Sofia, and the terrific folk at FixHepC for making this adventure possible.

YEAR..... ALT..... AST..... GGT... FERRITIN........................................
2009....... 210..... 215..... 953..... 1400........... (Bad health, stupidity)
2015....... 60....... 45....... 150..... 360............. (Improved diet and health, FixHepC treatment)
2016....... 20....... 24....... 25....... 156............. (SVR 12)
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X-post BMS Looking for people to go public 2 years 3 weeks ago #9720

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Yeah it dawned on me when I was nodding off to sleep last night I should have said BMS is Bristol-Myers Squibb - who make Daklinza/Daclatasvir (I should probably say hold the patent I guess).

And yes, on this we agree wholeheartedly. I think people should be very circumspect before going public. Let alone trusting journalists (and health professionals for that matter). I say that as someone who's had their privacy breached on this issue by both.

What's more, I don't believe it matters one jot. In gaining help, support, information, camaraderie and solace from people on this site, not once has not knowing people's real identities ever been a factor.

And it's pretty rich coming from a profession who are happy to publish stories based on "unnamed sources" which usually translates to one dumb politician leaking something scandalous about another dumb politician for which they have no hard proof and without the benefit of parliamentary privilege. IOW, precisely a situation where the source should either be named or the story go unpublished.

At the end of the day, the stigmatisation of HepC is other people's problem and needs to be recognised as such. It's no different to heterosexuals being opposed to marriage equality or women who want to attack other women on the internet because of the way they choose to raise their kids or not breast feed or whatever. If it's not illegal and it's not affecting them, they either need to get over it or just butt out.
Huon Valley, Tasmania
Hep C+ since 1980s
Genotype 1b
F3/4
VL 480,000
Started Indian Sof and Riba, BMS Dac (comp access) 28 August 2015
UND at 4 weeks
Finished treatment 19 November 2015
12 February 2016 UND SVR12
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The following user(s) said Thank You: Ariel

X-post BMS Looking for people to go public 2 years 1 week ago #10559

  • Chester
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If someone who sees this has em's email can you contact him and tell him to check his PMs.

I screwed up and sent the BMS lady's details via private chat instead of pm and so it's just disappeared into the ether. She's still keen to talk to him.

I also notice I put the other version of this post in frickin' Geopolitics. :S I meant to put it in News and Media. If a mod could move it, that would be appreciated.
Huon Valley, Tasmania
Hep C+ since 1980s
Genotype 1b
F3/4
VL 480,000
Started Indian Sof and Riba, BMS Dac (comp access) 28 August 2015
UND at 4 weeks
Finished treatment 19 November 2015
12 February 2016 UND SVR12
The administrator has disabled public write access.
The following user(s) said Thank You: Ariel

X-post BMS Looking for people to go public 1 year 11 months ago #12426

  • Ariel
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Did you reach Emilio? I can if you need still
Cheers
Ariel
PS I lobbied BMS over two years I have the letters back I wouldn't talk to them!!!
Have a good day can help to reach Em but guess you have by now?
#flower
Gen 1a
Peg/inf/riba 2012(!) stop @ Wk 43 potassium ext.low +issues (rlps week 4 post tx, VL120,000) secondaries eg. adenomas.
pre sof/led VL 240,000 Fibrosc F0
Day 25VL <30
Day 32 UND
Week 10 UND
EOT UND ALT11 AST17 GGT19
SVR4 UND ALT 10 AST 16 GGT 13
SVR8 UND ALT <9 AST 16 GGT 15
SVR12 UND ALT 14 AST 19 GGT 12 Bili 5
EOT +18 ALT13 AST20 GGT9 Bili 5
EOT +21 ALT11AST 15
Cured SVR12
Dysplasia Adenomas removed Aug '16
SVR24 UND ALT11AST16
Colonoscopy Clear Nov 2017
Lumpectomy Clear ‘18
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X-post BMS Looking for people to go public 1 year 11 months ago #12430

  • Chester
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Yes em and I have been in contact some time back. And I'm grateful he was happy to do it. The aim is to get the word out there so people seek Tx, after all.
Huon Valley, Tasmania
Hep C+ since 1980s
Genotype 1b
F3/4
VL 480,000
Started Indian Sof and Riba, BMS Dac (comp access) 28 August 2015
UND at 4 weeks
Finished treatment 19 November 2015
12 February 2016 UND SVR12
The administrator has disabled public write access.
The following user(s) said Thank You: Ariel

X-post BMS Looking for people to go public 1 year 11 months ago #12431

  • Ariel
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Great
Thanks Chester was offering help to get to Em
You can see a little bit more about what type of person I am and what I believe in my blog Ariel takes the plunge
My personal story on behalf of all Australians and actual real signature and address etc has been all through Tony Abbot Mike Baird etc etc
Good on you again Em
Cheers mate
Ariel
Gen 1a
Peg/inf/riba 2012(!) stop @ Wk 43 potassium ext.low +issues (rlps week 4 post tx, VL120,000) secondaries eg. adenomas.
pre sof/led VL 240,000 Fibrosc F0
Day 25VL <30
Day 32 UND
Week 10 UND
EOT UND ALT11 AST17 GGT19
SVR4 UND ALT 10 AST 16 GGT 13
SVR8 UND ALT <9 AST 16 GGT 15
SVR12 UND ALT 14 AST 19 GGT 12 Bili 5
EOT +18 ALT13 AST20 GGT9 Bili 5
EOT +21 ALT11AST 15
Cured SVR12
Dysplasia Adenomas removed Aug '16
SVR24 UND ALT11AST16
Colonoscopy Clear Nov 2017
Lumpectomy Clear ‘18
The administrator has disabled public write access.
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