It has been a very busy time of advocacy, as CFWA works closely with CF Australia and fellow Federation members to keep the CF community front of mind for policy-makers.
Recent announcements like access to Trikafta for 6 – 11 year olds are the result of community members advocating relentlessly, people writing to local members; and the positive engagement with decision-makers and stakeholders at all levels.
As a CF community, we are fortunate to have strong allies in members of Parliament like Dr Mike Freelander MP, Dr Monique Ryan MP and Bridget Archer who are Co-chairing a new Parliamentary Friends of Cystic Fibrosis Group (“PFG”). The official launch was last Thursday at Parliament House Canberra, with our CEO Lisa Bayakly, Board member Feliciano Sanchez, and CFA President Mitch Messer attending from WA. The room was packed to capacity with parliamentarians, clinicians, families and friends of people with CF.
The PFG is an important forum to raise awareness and inform policy makers about the many and diverse needs of the CF community, as part of a national patient voice. The many Parliamentarians who attended the launch gained insights hearing from guest speakers Jess Ragusa, Bradley Dryburgh, Shannon Malone-Brierley and Mitch Messer, together with stories other community members shared with CFA. The PFG will meet 2 or 3 times a year, enabling us to continue to highlight community needs, including therapies for people with rare mutations, those who cannot take or don’t respond to current therapies, and other needs as life expectancy increases.
Thankyou to everyone in the community for your support and stories.