NECA recently joined the second Rare Conversations event, hosted by the Patient Voice Initiative and Alexion, to discuss PBS reform for rare disease treatments. It was a valuable opportunity to advocate on behalf of the NET community and connect with fellow rare disease organisations working towards greater access and equity. Invited to be on the panel were Dr Gordon Reid Federal Member for Robertson Member of the House of Representatives health committee and emergency doctor., Ann Single CEO, Patient Voice 7 President of HTAi, Timothy Fulton Inaugural Ambassador, Rare Voices Australia Founder, Running Rare, Dr Andrew Wilson Co-Director, Leeder Centre for Health Policy, Economics and Data Professor, Public Health in School of Public Health,
University of Sydney Former Chair, Pharmaceutical Benefits Advisory Committee (PBAC) and dr Danny Hsu Director, Immune Haematology, Obstetric Haematology, Haematology Clinical Trials Unit in South West Sydney Local Health District
President, Thrombosis Haemostasis Society of Australia and New Zealand (THANZ). During the afternoon IQVIA launched its White Paper – All Too Rare – the PBS access gap for two million Australians with a rare disease. An important statistic in the report was that only funded 72 medicines for rare disease in the decade to 2025 compared with 114 in Sweden and 104 in the UK which had Australia at the bottom of the comparator group. There was a lot of discussion about HTA processes & policy and that Australians with rare diseases may wait longer or miss out altogether – Dr Wilson suggested better payment models may improve this issue in Australia. It is hoped that government will action the HTA reform recommendations soon.
Following Rare Conversation there was a PUPP (Professionals Uplifting Patient Partnerships event “From Patient Voice to Policy Influence” with invited speakers Jamie Snashall (former Senior Advisor to Min Mark Butler) and Monique Green (CEO Red Kite). This was a wonderful opportunity to learn more about the Senior Advisor role & what a day looks like, tips on advocacy work – does & don’t, preparing for an meeting with a MP. Monique shared her experience over the last 5 years as CEO for Red Kite. There was also time for Q&A from the audience & networking.
