Rare Voices Australia (RVA) staff were pleased to attend the Health Technology Assessment Consumer Consultative Committee’s (HTA CCC) ‘Making Connections’ Symposium (the Symposium) on 23 September. The Symposium brought together consumers and consumer organisations with an interest in engaging with health technology processes to build connections, share experiences and receive updates about these processes. RVA’s Chief Executive Officer, Nicole Millis, also attended in the capacity of her role as the ministerially appointed consumer nominee on the Life Saving Drugs Program Expert Panel.
In line with the National Strategic Action Plan for Rare Diseases (the Action Plan), the Symposium emphasized the centrality of consumers/patients in Health Technology Assessment (HTA). This was highlighted in the opening address by Adriana Platona, the First Assistant Secretary of the Department of Health. The Symposium consisted of two plenary sessions. The first focused on genomic testing and cell and gene therapies; the second concentrated on the National Medicines Policy Review. Other sessions included a focus on Real World Evidence and an update on the work of the Consumer Evidence and Engagement Unit. Attendees also heard from the Pharmaceutical Benefits Advisory Committee (PBAC) and Medical Services Advisory Committee (MSAC) Chairs.
Additionally, breakout sessions included consumer HTA experiences. Congratulations to Naomi Ford from RVA Partner, XLH Australia, as well as Julie Cini from RVA Partner, Spinal Muscular Atrophy (SMA) Australia, who presented during these sessions and shared their learnings. Both RVA Partner organisations have previously utilized RVA’s mentorship support and guidance in their HTA experiences. Thank you to Naomi who clearly highlighted the importance of this informed support in contributing to the progress the XLH Australia community achieved. In RVA’s experience, rare disease group leaders with a working understanding of HTA policy are much better positioned to provide well-informed support to their community.
RVA congratulates the HTA CCC led by Jo Watson and Sally Wortley for this successful Symposium. We look forward to continuing our ongoing work in rare disease HTA through RVA’s successful mentorship program and our broader advocacy work with the Consumer Evidence and Engagement Unit and the Department of Health as we continue to actively contribute to key HTA policy reviews; the House of Representatives Standing Committee on Health, Aged Care and Sport’s Parliamentary Inquiry into approval processes for new drugs and novel medical technologies in Australia, the high level National Medicines Policy Review and the recently announced future independent HTA review – a technical review on policy and methods.
