Today, NeuroEndocrine Cancer Australia attended the Australian Patient Advocacy Alliance (APAA) Summit at Parliament House in Canberra, joining patient groups from across the country to discuss the future of chronic disease policy and patient engagement in Australia.
It was encouraging to hear strong recognition from both Government and Opposition that the patient voice must be at the table when health policy is shaped.
Across sessions on chronic disease reform, HTA review, prevention and integrated care, several themes stood out:
- Equity of access remains a major challenge, particularly for people in rural and regional Australia
- Chronic disease care must move beyond episodic treatment to coordinated, multidisciplinary models
- Prevention and early intervention are essential, but must be properly funded and implemented
- Consumer engagement in HTA and reimbursement decisions needs to be strengthened structurally, not left to goodwill
Attendees heard from Health Minister Mark Butler and Shadow Health Minister Anne Ruston during the Summit.
Minister Butler acknowledged the need to strengthen consumer engagement within HTA processes, noting upcoming consultations to build a more structured and systemic framework for patient input. For NET patients, meaningful involvement in reimbursement decisions is critical to ensuring timely and equitable access to innovative therapies.
Senator Ruston highlighted that while strategies and frameworks are important, they must be implemented to deliver meaningful outcomes. NECA strongly agrees. For people living with neuroendocrine cancer, reform must translate into tangible improvements in access to care, diagnostics and treatment.
For the 31,000 Australians living with neuroendocrine cancer, these discussions are not abstract policy debates. They directly affect access to diagnostics, specialist multidisciplinary care, medicines, and coordinated long term support.
NET patients often navigate fragmented systems, delayed diagnosis and inequitable access to specialist services. As highlighted repeatedly today, coordination of care and equitable access are not optional extras. They are foundational to good health outcomes.
NECA will continue to advocate for:
- Stronger consumer engagement in HTA and reimbursement decisions
- Sustainable funding models that support coordinated chronic disease care
- Equity of access regardless of postcode
- Implementation of reforms, not just publication of frameworks
We welcome the bipartisan tone of today’s discussions and look forward to continuing to work constructively with policymakers to ensure people living with neuroendocrine cancer are not left behind.
