Updated: 2024-2025 Federal Budget and Australians living with a rare disease

RVA News

Last night (Tuesday, 14 May), the Hon Dr Jim Chalmers MP (Treasurer of Australia) handed down the Albanese Government’s 2024-2025 Federal Budget. Reviewing the Federal Budget to identify any relevant measures for the rare disease sector has taken some time – there is some good news but work is still needed in some areas.

Rare Voices Australia (RVA) welcomes the Australian Government’s investment of $25 million to support the continued delivery of newborn bloodspot screening (NBS) expansion and consistency of conditions. As outlined in the Australian Government’s National Strategic Action Plan for Rare Diseases (the Action Plan), early diagnosis is critical in rare disease for better outcomes as it enables the best immediate treatment and care.

RVA was also pleased to see the inclusion of $2.6 million in 2024–2025 to support patient care improvement and general practitioner services, health professional education, condition awareness and digital resources for childhood dementia, juvenile arthritis, stroke, rare diseases and epilepsy.

As the national peak body for Australians living with a rare disease, RVA lodged a Pre-Budget Submission that aligns with the priorities, actions and implementation steps outlined in the Action Plan to accelerate its collaborative implementation. This included funding for Centres of Expertise (CoE) through a competitive workforce grant to develop and accelerate models of expert rare disease care. CoE and a sustainable workforce are critical to addressing gaps in rare disease care and are also key to ensuring that the full benefits of the NBS can be experienced, addressing significant unmet needs and gaps across the rare disease community. We are disappointed that this priority for the rare disease sector did not receive funding.

RVA will continue working with all Australian governments to advocate for the best outcomes for the estimated two million Australians living with a rare disease starting with several political and departmental meetings in Canberra this week.

RVA also attended the Department of Health and Aged Care’s post-Budget webinar and Q&A today (Wednesday, 15 May) with the Hon Mark Butler MP, the Hon Anika Wells MP, the Hon Ged Kearney MP, the Hon Emma McBride MP and Senator the Hon Malarndirri McCarthy. The session was facilitated by the Secretary of the Department of Health and Aged Care, Blair Comley PSM.