Lives unaffected by cystic fibrosis

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ORKAMBI - Advocacy Kit

Sadly, people living with CF in Australia who have two copies of the F508del gene mutation have been denied access to ORKAMBI to date. 

On 3 July it will be the fourth time ORKAMBI has been submitted to the Pharmaceutical Benefits Advisory Committee (PBAC) for reimbursement, it may be the last submission by Vertex if it is not accepted this time. As a community we need to do everything we can over the next 8 weeks to encourage an agreement on price.

We need to hear your voice! 

We need each person with CF, parents and grandparents of children with CF, siblings, and other relatives to write to the Government and Vertex to let them know how important ORKAMBI is to us. The lives of members of our CF community depend on it. 

Our Government needs to know we are dissatisfied with their efforts to negotiate and Vertex needs to understand that their pricing is outrageous and needs to come down.

To help you with this we have put together an advocacy kit that includes:

Send your letters and comments to:

  • Vertex Pharmaceuticals
    Mr Simon Bedson, Senior VP and General Manager, International Commercial Operations
    Fax: (02) 8425 0224
  • Minister for Health
    The Hon Greg Hunt MP via his website