As the national peak body for Australians living with a rare disease and as part of our Education Program, Rare Voices Australia (RVA) hosted a webinar on 12 July 2023 to provide further detail about the recent changes made to newborn bloodspot screening (NBS) and their impact on Australians living with a rare disease. Read the Australian Government’s media release on the Department of Health and Aged Care’s website for more information about the changes. The findings from the Consultation Survey can also now be downloaded.
For the first time in 60 years, Australia has an agreed national list of NBS conditions and there is specific funding to achieve consistency across Australia. Additionally, these changes cement Australia as a world leader in NBS. As outlined in the Australian Government’s National Strategic Action Plan for Rare Diseases, early diagnosis is critical for better outcomes as it enables the best immediate treatment and care.
- Hon Mark Butler MP – Minister for Health and Aged Care
- Senator the Hon Anne Ruston – Shadow Minister for Health and Aged Care
- Dr Mike Freelander MP – Chair, Standing Committee on Health, Aged Care and Sport; and Co-Chair, Parliamentary Friends of Rare Diseases
- Lisa Schofield PSM – First Assistant Secretary, Cancer, Hearing and Chronic Conditions, Department of Health and Aged Care
- Dr Kevin Carpenter – Chief Executive Officer, Human Genetics Society of Australasia
- Nicole Millis – Chief Executive Officer, RVA
- Louise Healy – Education and Advocacy Manager, RVA (webinar host/Q&A moderator)
This Webinar Covered:
- Expanding NBS and the Australian Government’s objectives
- Progress made regarding NBS
- States/NBS programs’ perspectives
- NBS public consultation/follow up consultation findings; actions taken; next steps and future-proofing screening
- Reflections on NBS advocacy
- The importance of these changes for Australians living with a rare disease
Why Changes to Newborn Bloodspot Screening Are Important
NBS is an important program that supports the earliest possible diagnosis of some rare diseases. The rare disease community has been calling for increased equity, timeliness and consistency of screening for several years.
RVA has been highlighting the need for increased sustainability, equity, transparency and consistency of NBS through targeted and informed advocacy at both the Commonwealth and state levels. We will continue to work alongside all governments as they continue to expand NBS programs.