#1
Thu, 06/08/2017 - 19:55
Let's chat Advocacy
With Orkambi back on the PBAC agenda and Bronchitol also included, there has never been a more important time to make our voices heard.
CFA have a regular presence in Canberra, lobbying our Politicians for access to these life changing drugs. We regularly contact the media to raise awareness and share your stories.
Use this thread to share:
- your ideas on what else you think we should be doing
- what you are doing that you think others could adopt
- any other feedback you have relating to advocacy.
Hi CFA,
I'm wondering if it might be appropriate to approach the PBAC and ask if they, with agreement from Vertex, might be able to make some parts of the Orkambi submission publically available when a decision is made after the July PBAC meeting? I realise Vertex's submission is 'commercial in confidence' (sensitive business information) but there might be some parts that could be either released or summarised / edited and released. Of course if the information is not helpful for the CF community to understand why the PBAC decision was made, then it's probably not a worthwhile thing to do. Just a thought.
Thanks
Sonia Marshall