Michelle Ananda-Rajah (Higgins, Australian Labor Party) Share this | Hansard source

Today we discuss a matter that lies at the intersection of science, health and human rights. In a world where medical breakthroughs continually shape our understanding of disease and health, the field of genetics has, for decades, held great promise but not fully realised its potential, due to problems with equity of access, the absence of an overarching national strategy and the challenges of navigating care, which are all made worse by the tyranny of distance across our vast land.

In adult medicine, I saw firsthand how the incorporation of genetic information in tumour typing guided choice of first-line and salvage chemotherapy for a range of tumours, including breast, bowel and haematological malignancies. Patients with blood cancers like leukaemia and lymphoma cycle between clinical trials based on biomarkers in their tumours. I often encountered patients who died not from their leukaemia but from opportunistic infections due to fungal pathogens or dormant viruses triggered by a failing immune system. Surprisingly, however, thanks to targeted immunotherapies, many patients lived years with poor prognostic cancer before the bugs finally caught up with them. Cancer as a chronic disease could become a reality thanks to genomics. The evolving genetic profile of the tumour can be matched to a different treatment regimen, often in a trial context. These patients have access to next-generation sequencing, advanced bioinformatics and cutting-edge treatments, thanks to clinicians and clinical trial teams who are competitive at obtaining funding for research.

How many Australians have access to this level of expertise? In my own electorate, Cabrini Health's Malvern hospital has a state-of-the-art cancer centre and is looking to expand with a $200 million investment in infrastructure. Patients will have their cancers biopsied; staged with CT, MRI or PET; sequenced; and analysed with AI. The patients will undergo surgery if required, be admitted into clinical trials and be provided with treatment either at home or in-house, in the beautiful oncology suite—thanks to the generous support from the Gandel family—with or without radiotherapy provided in the basement by GenesisCare, and the supportive care extends to exercise physiologists undertaking research in the gym downstairs. This is not science fiction; this is already happening: true one-stop care along the disease continuum. How many facilities in Australia can boast this level of care? Somehow, thanks to the smarts and networks of their specialist doctors, these patients are given access to highly specialised medicine. No crowdfunding is required.

I want to commend Rare Cancers Australia for unpacking, in their Vision 20-30 report, what best practice should look like. It describes, in poignant detail, the journeys of several Australians with a parallel future of what should have been. It draws upon multiple domain experts and patient voices to produce something to aspire to. Part of the challenge I see is the fragmentation of our health system, with siloed primary care, hospital care and community care. But Vision 20-30 shows us ways of overcoming those barriers by putting patients, with their GPs, at the centre, supported by a network of specialist doctors and teams. It does mean stopping the attrition of general practitioners and supporting Medicare with bulk billing. This is why we have introduced a $3.5 billion tripling in the bulk-billing incentive. It absolutely impacts patients who suffer from cancer. We are also trying to arrest the decline in bulk billing and in GPs leaving the profession. We have introduced fee waivers for GP trainees in remote and regional areas and extended funding for longer consultations.

I am pleased that the Albanese government is committing $166 million for a first-of-its-kind Australian Cancer Nursing and Navigation Program as part of its support of the recently released landmark Australian Cancer Plan. Cancer nurses will help patients navigate the bewildering complexity of the health system when they are most vulnerable. Patients travelling between specialists, with GPs simply getting the letters—if they're lucky—is neither efficient, affordable nor patient centred.

Muddying the waters, of course, is the issue of genetic information and life insurance. Currently, there is no legislation that prohibits the use of genetic information by life insurance companies to deny or increase the cost of cover.

This is despite a 2018 parliamentary joint committee report recommending that a ban be implemented. The current limits to consumer protection mean that Australia is not fulfilling the potential of genetic medicine, and this is something that we need to reform. It underscores the importance of the work that is being led currently by Minister Stephen Jones to prevent genetic discrimination entering our lives. An overarching national strategy will help us tie up these loose ends and enable Australians to benefit from the advances of genomics.

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