On 16 and 17 November 2010, PNH patients Linda Charlton (President) and Jenny Sturrock (Secretary) met with numerous Senators and MPs across all political parties, including Independent Andrew Wilkie MP at Parliament House.

Whitney Lane (click here for profile) accompanied Linda and Jenny at Question Time on Wednesday 17 November, during which the Opposition raised the issue of the delay in funding Soliris, as a result of their meeting with Shadow Health Minister Peter Dutton MP.

Shortly after, the Prime Minister invited Linda, Jenny and Whitney to meet with her to share their stories and explain the current situation.  The Prime Minister also arranged a separate meeting for the group with the Health Minister.

Both Ministers kindly gave their time and attention and assured us that the Government is working quickly to finalise necessary arrangements prior to funding.

However, it is still uncertain when funding will be announced and treatment will become available to patients.

We urged Ms Gillard and Ms Roxon to ensure Cabinet makes a decision in the coming days to enable patients to receive treatment before Christmas.

18.11.10 – Media Release