On Tuesday, 12 May 2026, the Hon Dr Jim Chalmers MP delivered the Albanese Government’s 2026-27 Federal Budget (the Budget). Rare Voices Australia (RVA) has been reviewing the Budget’s impacts on the rare disease sector. Additionally, we have met with the Hon Mark Butler MP’s office to seek further clarification and provide initial feedback.
The Budget Delivers Mixed Outcomes for Australians Living with a Rare Disease
Increase in Medical Research Future Fund Investment
RVA welcomes the Australian Government’s decision to increase Medical Research Future Fund (MRFF) disbursements, lifting annual investment to $1 billion from 2030. This funding acknowledges the critical role that investment in health and medical research plays in improving health outcomes. RVA is proud to have contributed to the collective advocacy that led to this result. We will continue advocating for a dedicated Rare Disease MRFF Mission to address the significant and ongoing gaps in rare disease research funding.
Insufficient Funding for Health Technology Assessment Reform Implementation
The rare disease sector has been let down by this Budget given Australia has spent years working on critical health technology assessment (HTA) reform consultation and recommendations – reform that is critical to Australians living with a rare disease. The HTA Review Implementation Advisory Group (IAG) delivered its final report and roadmap to Minister Butler in December 2025. We acknowledge work has commenced on the three recommendations endorsed by the Minister last September. However, the Australian Government had a responsibility to use this Budget to accelerate long-awaited HTA reform to address a lack of timely and equitable access to innovative therapies.
The rare disease consumer sector, RVA and the broader rare disease sector have invested significant time, expertise, and resource into supporting the HTA reform process, trusting the government’s explicit commitments over the past four years. RVA is concerned about the government’s reliance on the upcoming strategic agreement negotiations between industry and department to progress HTA reform – a process that is not transparent or open to consumers.
Ongoing Concerns Regarding the National Disability Insurance Scheme Reset
RVA acknowledges the Australian Government’s intent to strengthen the integrity and long-term sustainability of the National Disability Insurance Scheme (NDIS). However, we remain concerned about the magnitude of cost savings announced in the Budget, and the impact this could have on vulnerable people if nuanced care is not taken.
The NDIS reset must safeguard Australians living with a rare disease by being informed by rare disease expertise. Reforms must continue upholding fundamental safeguards, including the right to the independent review of access and planning decisions.
Failure to Recognise Links Between HTA Reform, the NDIS and the MRFF
RVA previously applauded the integration of health and disability into one government portfolio, hoping it would facilitate more strategic, interrelated person-centred policy approaches. Unfortunately, this Budget misses the mark.
MRFF investment (translational research), alongside the strong focus on achieving NDIS cost savings, makes the government’s lack of investment in HTA reform particularly inexplicable. Innovative therapies have the potential to be transformative for people with rare genetic conditions. However, the current HTA system doesn’t adequately incentivise timely access to these technologies in Australia.
Strategic investment in HTA reform will improve access to these therapies, fully leverage MRFF investment, and ultimately reduce long-term disability burden and ongoing demand. Aligning NDIS cost savings with investment in health and disability system reform represents a clear opportunity to deliver better outcomes for people and more sustainable system-wide expenditure.
Next Steps for RVA and the Rare Disease Sector
RVA calls on the Australian Government to urgently prioritise investment in HTA reform implementation. We encourage all rare disease stakeholders to contact their local member and Minister Butler to call for urgent investment in HTA reform implementation.
