Rare Voices Australia (RVA) welcomes the publication of the Health Technology Assessment (HTA) Policy and Methods Review final report (the HTA Review report), Accelerating Access to the Best Medicines for Australians Now and into the Future.
The Hon Ged Kearney MP, Assistant Minister for Health and Aged Care, launched the HTA Review report in Canberra on 10 September. The Assistant Minister acknowledged the extensive consultation and stakeholder input that informed the HTA Review report, emphasising the role of the consumer representatives in the HTA Review Reference Committee (the Committee). The importance of extensive multistakeholder consultation was also reiterated.
As the national peak body for Australians living with a rare disease, overall, RVA is cautiously positive about the HTA Review report which contains 50 recommendations. The Assistant Minister emphasised the Australian Government’s commitment to forming a multistakeholder implementation group to drive implementation of the HTA Review report’s recommendations, which were noted as including both recommendations for sensible and specific changes as well as more visionary reforms.
Positive Aspects for People Living with A Rare Disease*
The HTA Review report must be considered in its entirety with the Committee noting that the recommendations should be considered as a package of reforms. Throughout the final HTA Review report, there is repeated emphasis on:
- Therapies to address high unmet clinical need (this applies to most rare diseases)
- Improving time to access life-saving therapies for ultra rare diseases
- The use and collection of real-world evidence to support HTA decision-making
- More flexible managed entry and resolution pathways
- The needs of small patient populations
- Establishment of a bridging fund for fast access in specific situations
- Development of an explicit values framework
- Horizon scanning and proactive pre-HTA processes to identify and introduce health technologies where there is high unmet clinical need
- Specific measures to make HTA more fit for purpose and timely for highly specialised therapies
- Commitment to reducing resubmissions and a more streamlined yet flexible HTA system
- Recognition of the need to measure and continuously improve the impact of these changes to ensure timely, consistent and equitable access
The final HTA Review report and several recommendations also contribute to ensuring a streamlined and proportionate HTA process that is easier for stakeholders to navigate and follow.
We congratulate the Committee for producing a nuanced and considered set of recommendations. Ann Single, RVA Scientific and Medical Advisory Committee member, was a consumer representative on this Committee.
*Please note: This is not an exhaustive list. Download the final HTA Review report to read the recommendations in full.
Enhanced Consumer Engagement Process Recommendations
RVA also welcomes the publication of the recommendations from the Enhanced Consumer Engagement Process, developed by a consumer-led multi-stakeholder Co-design Working Group. Enhance HTA: An Enhanced Consumer Engagement Process in Australian Health Technology Assessment – A Report of Recommendations acts as a companion document to the HTA Review report and includes 10 recommendations to align and elevate the focus on consumer engagement.
RVA was pleased that the publication of these reports as companion documents highlights the importance of consumer input into HTA. We congratulate the Co-design Working Group, which included RVA’s Chief Executive Officer, Nicole Millis, for the strong and clear recommendations in the report.
Implementation of the Recommendations
While RVA is cautiously positive about the HTA Review report, we note some of the recommendations can be further strengthened from a rare disease perspective. RVA has raised this directly with the Minister for Health and Aged Care’s office.
RVA also welcomes the commitment of the government to form an independent, multistakeholder group to oversee implementation. RVA will be advocating for very strong rare disease and consumer expertise on this group.
Rare Voices Australia Partner Forum
RVA will be facilitating our inaugural RVA Partner Forum on 24 September for RVA Partner groups/representatives. The purpose of the session is to:
- Speak in more detail about the recommendations relevant to Australians living with a rare disease
- Hear your thoughts on both reports and their recommendations
Details
Date: Tuesday, 24 September 2024
Time: 12pm (AEST)
We will share more information as soon as possible via email and post in the private Facebook group for RVA Partner groups/organisations.
Acknowledgements
RVA thanks the HTA Review Reference Committee (the Committee) and the Enhanced Consumer Engagement Codesign Working Group for their efforts and carefully considered approach to this important work. Additionally, we thank the many stakeholders across the rare disease sector for their strong contributions to both processes.
As the national peak body for Australians living with a rare disease, RVA has ensured the needs of the estimated two million Australians living with a rare disease have been considered throughout these processes. We also acknowledge the rare disease-specific expertise on the Committee and RVA’s consumer representation on the Enhanced Consumer Engagement Codesign Working Group.
This work was informed by, and builds on, The New Frontier – Delivering better health for all Australians. The National Strategic Action Plan for Rare Diseases is also referenced in the final HTA Review report.
