Newly launched Parliamentary Friends Group to keep cystic fibrosis community front of mind

Pharma News: Yesterday marked the official launch of the Parliamentary Friends of Cystic Fibrosis Group. Cystic Fibrosis Australia was honoured to be a part of this event and advocate for the CF community as part of the national patient voice.

Chairs Dr Michael Freelander MP, Monique Ryan MP and Bridget Archer MP shared why the establishment of this group is crucial for the CF community.

Cystic Fibrosis Australia, CEO, Jo Armstrong, said “The establishment of the Cystic Fibrosis Friendship Group is a significant step in ensuring that the cystic fibrosis community is heard by our nation’s leaders. There are a range of critical issues impacting the community and together we can seek progress so that all Australians living with cystic fibrosis can have longer, healthier lives.

“CFA also acknowledges the many Parliamentarians who attended for their support of Cystic Fibrosis. Thank you also to the clinicians, researchers, federation members, friends, family, and community members who attended.”

Cystic Fibrosis Australia has been calling on the Federal Health Minister, Mark Butler “to do all that he can to accelerate the listing of Vertex’s Trikafta” for 6-11 age group.

Liberal Senator Kerrynne Liddle said in Parliament earlier this week “In November last year the PBAC recommended that the innovative drug Trikafta be added to the PBS for treatment of children, with cystic fibrosis, aged 6 to 11 years. However, government has, so far, failed to add this life-changing medicine to the PBS, despite the months that have passed since it was recommended.

“The government must do the right thing by the 500 children with cystic fibrosis who would benefit from affordable access to this life-changing medicine and list this medicine on the PBS.”

Sabrina Barbic, Senior Country Manager, Vertex Pharmaceuticals said “We are thrilled to be at Parliament House alongside the patient community to support the launch of the Australian Parliamentary Friends of Cystic Fibrosis Group.”

Over 1 million Australians have the cystic fibrosis gene. Every 4 days a baby is born in Australia with cystic fibrosis.

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