Advocacy update
Alongside the NF community, we have cleared a path for new trials, record breaking government funding to support research, and a significant increase in public understanding of neurofibromatosis (NF). We connect with decision makers and community leaders to share your concerns, needs and hopes at range of different levels.
Building Connections in Perth
In March, the support team connected with multiple Pert- based specialists, nurses and organisations that have a direct and important impact on our NF community. These meetings were about creating better understanding and pathways to care in WA and working together to ensure support for children, adults and their families.
Dr Katrina Harrison - Genetic Counsellor from Genomic Health
Charlotte Allen - Clinical Nurse Specialist at Perth Children's Hospital
Dr Gargi Pathak – CTF Medical Advisory Panel member
Simone Yandell - WA Operations Manager from Kalparrin
“It was great to talk about collaborations and to share resources with the hope of ensuring every person with NF feels supported and connected,” says, CTF's Head of Support, Ruth Lindsay.
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Supporting efforts to enable greater access to Selumetinib in Australia for paediatric patients with inoperable plexiform neurofibromas (PN).
In November, Alexion Pharmaceuticals submitted an application to the Pharmaceutical Benefits Advisory Committee (PBAC) to have selumetinib funded added to the Pharmaceutical Benefits Scheme (PBS) for the treatment of NF1 paediatric patients who have symptomatic, inoperable PN.
Whilst this application was not approved at the time, the PBAC acknowledged that selumetinib addressed a high and urgent unmet clinical need for children with inoperable PNs.
Last week, the PBAC held a meeting to discuss the application and attempt to resolve the issues which prevented the drug from being approved last year.
We were invited to attend to offer the collective consumer perspective of what a drug like selumetinib will do for the NF community.
Building relationships with Local Government
In early April, our CEO, Leanne Dib and Head of Support Services, Ruth Lindsay met with Dr Mike Freelander MP for Macarthur to discuss ways to engage government on issues of national importance to the NF community.
Dr Freelander worked as a paediatrician in Campbelltown, dedicating his life to making sure kids got the best start in life, including children with neurofibromatosis.
Evolving the partnership with Sydney Children’s Hospital, Westmead (SCHW)
In April, our support services team presented to the Neurogenetics Department at Children’s Hospital Westmead to provide an update on the non-clinical role we play to support the NF community, including client advocacy, government liaison and NDIS access.
We look forward to continuing to update you with our ongoing advocacy efforts across Australia.