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TOPIC: BMS Looking for people to go public - PBS Launch

BMS Looking for people to go public - PBS Launch 5 years 8 months ago #9669

  • 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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BMS Looking for people to go public - PBS Launch 5 years 8 months ago #9719

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Hi Chester

Im happy to be involved, lm recently out via a previous SMH article. Treated with peg/riba and a trial PI back in 2007 for 63 weeks. Now just finishing up 18 weeks of sof/dac generics. Would like to know a bit more about the slant etc but happy to discuss with BMS. Em
Geno 1b F2/3 snce early 80s. Treated in 2008_9 for 63 weeks on INF/Riba. Commence Sof/Dac on 6 October 2015 and completed 18 weeks of tx. UND at 4-6 weeks, UND at EOT, SVR 2, SVR 6 and SVR 12 on 6 May 2016.
Last Edit: 5 years 8 months ago by emilio.
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BMS Looking for people to go public - PBS Launch 5 years 8 months ago #9723

  • Chester
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Great I'll PM her info.

As for the slant, I've said pretty much all I know. I suggest discuss it with her further. I found her kinda naive (in a sweet, innocent way) and pretty oblivious to the politics behind it all. She seemed to genuinely not get my gentle nudges that they should compete more with their opposition where they can (led vs dac) because some competition is sorely needed.

I think it's the journos you need to be most wary of and the spin they may potentially try to put on it. When the PBS listing was announced, that stupid Deb woman on the Today show actually asked the health minister if everybody would be able to get the drugs "no matter how they contracted the disease". What a low life! You could try asking the journo if you could fact check the story for accuracy before it's published/aired. But I wouldn't be confident of them agreeing.
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
Last Edit: 5 years 8 months ago by Chester. Reason: Fixed typo
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BMS Looking for people to go public - PBS Launch 5 years 8 months ago #9753

  • Gaj
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Hi Chester, please check your PMs



......for the rest of you: No, I'm not planning on removing my shades and staring at the spotlights B)
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
:cheer: :cheer: :cheer:
Last Edit: 5 years 8 months ago by Gaj.
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