Update: Health Technology Assessment (HTA) Reform – July 2026

Progressing health technology assessment (HTA) reform remains a high priority for Rare Voices Australia (RVA) as the national peak body for Australians living with a rare disease.

Current HTA processes are not fit for purpose when assessing rare disease therapies. Australians living with a rare disease continue to experience delays in accessing emerging treatments or are unable to access therapies already subsidised for people with more common conditions.

Recently, RVA’s pharmaceutical industry partners have told us that Australians living with a rare disease are increasingly at risk of missing opportunities to participate in late-stage clinical trials, as companies perceive that securing equitable access through government subsidy in Australia is too difficult.

The rare disease sector has contributed constructively and diligently to the HTA Review, the Enhance HTA consultation, and the HTA Implementation Advisory Group’s roadmap for implementing recommendations. It is urgent that implementation progresses now.

Rare Voices Australia’s Health Technology Assessment Advocacy Since May 2026

Since the 2026-27 Federal Budget was announced in May, RVA has undertaken the following actions:

• Released a post-Budget statement highlighting the importance of government investment in HTA reform.
• Met with Minister Butler’s office regarding HTA reform and the 2026-27 Federal Budget.
• Worked alongside Patient Voice Initiative and Lymphoma Australia to facilitate consumer sector engagement with Minister Butler, highlighting the importance of consumer perspectives informing implementation of the recommendations. As a result, Minister Butler agreed to facilitate a meeting with consumer groups. Follow-up communication to the Minister has been drafted, and RVA Partner groups/organisations have been invited to co-sign this letter.
• Continued encouraging RVA Partner groups/organisations to engage in HTA advocacy. A key message from the meeting with Minister Butler was the importance of informing other parliamentarians, including members of the Expenditure Review Committee, about the urgency and necessity of HTA reform. RVA is asking RVA Partner groups/organisations to contact their federal representatives and has developed letter guides with key messages to support this advocacy.
• Encouraged RVA Partners to take every opportunity to inform policymakers about the need for HTA reform.

Next Steps

This work is ongoing, and the HTA Review presents the strongest opportunity to address the systemic inequity experienced by Australians living with a rare disease in accessing therapies. RVA remains concerned that without coordinated advocacy across multiple channels, this necessary reform may stall. We encourage RVA Partner groups/organisations and other stakeholders to proactively advocate for HTA reform.