Wendy Askew (Tasmania, Liberal Party) Share this | Hansard source

I rise today, on Rare Cancers Awareness Day, to speak to the Community Affairs References Committee report which was presented on Friday 17 May. The inquiry examined the equitable access to diagnosis and treatment for individuals with rare and less common cancers, including neuroendocrine cancer. As a Tasmanian, I have long known that people who receive a rare-cancer diagnosis will most likely have to leave our island for treatment or at least some part of that treatment. This is especially true for children, as any childhood cancer is deemed rare. Being faced with a cancer diagnosis is hard enough, but being faced with a rare-cancer diagnosis and the knowledge you will need to travel to another state for treatment, and may even need to relocate while that treatment continues, is heart wrenching. Of the rare-cancer patients who can be treated in Tasmania, many will still need to travel, unless they live in Hobart. A large part of Australia's population is spread out, not concentrated in capital cities, making it likely rare-cancer patients nationally will also have to travel hours from home for diagnostic scans or life-saving treatment.

The knowledge that this is what Tasmanian cancer patients face has concerned me for some years. Not long after I entered the Senate, Rob Hammond, from Tasmania's north-east, came to see me about the lack of treatment and support options available to him, as someone living with neuroendocrine tumours, or NETS. He watched as his sister died from NETS at 70 and his brother at 68, and, sadly, Rob's older brother also has NETS. Rob is doing all he can to stay well, build awareness of NETS and advocate for his family and the 500 Tasmanian NETS patients, but whenever Rob needs specialist treatment he has to travel for more than two hours to Hobart, with the additional hardship of being away from his support network while he receives that treatment. When he sees a local healthcare provider, he often has to explain what NETS is and what is needed. While NETS is one of the more frequently seen rare cancers, there is still a lack of knowledge about it.

It pains me to say that Rob is not alone in this exhausting cycle of treatment, advocacy and rest. After speaking with Rob, and being aware of others with similar experiences, I knew this was a topic that needed further investigation through the Senate committee process, and I was pleased that the Community Affairs References Committee instigated this inquiry in June last year. The committee received nearly 150 submissions and heard from around 70 witnesses at five public hearings, to ensure we had a thorough understanding of the inequities facing rare-cancer patients. I want to express my thanks to each and every one of those who made a submission to the inquiry, especially those who appeared as witnesses during our hearings and shared their personal stories.

I am pleased to advise the Senate that the committee took a unified approach in the preparation of our report. Members worked hard to canvass wide-ranging sources to increase our understanding so we could ensure the recommendations presented were both constructive and meaningful. I want to acknowledge the committee's previous chair, former senator Janet Rice, for her work during a large part of this inquiry, and I'm grateful for the support offered by the incoming chair, Senator Allman-Payne, in continuing her predecessor's work. My gratitude also goes to all committee members for their cooperative and positive approach and to the community affairs secretariat, an exceptional team that worked tirelessly on this inquiry and ensured its smooth transition from inception through to delivery.

We want people who are diagnosed with and receiving treatment for rare and less-common cancers to feel supported—medically, psychologically, emotionally and financially—so they can put their health first. Worrying about whether they can afford the scan their doctors say they need, how far they need to travel to receive treatment or whether they can afford to take time off work to look after their sick child while they undergo cancer treatment will hinder, not help, their prognosis. Nobody should feel they have the wrong kind of cancer, as so many witnesses told committee members. The ability to access life-saving diagnostic tests and treatments should not be a postcode lottery. Australia has some of the best cancer outcomes in the world, yet it is clear from the evidence heard throughout the inquiry that this is not the case for all patients.

Each year, approximately 52,000 people are diagnosed with a rare or less common cancer. This equates to three in 10 cancer diagnoses annually; however, these cancers account for 42 per cent of all Australian deaths from cancer. There are many reasons for these disproportionate statistics, but the major factor is that rare-cancer patients don't have the same level of access to diagnostic tools and treatments as those with more common cancers. A patient diagnosed with gallbladder cancer doesn't have access to the same level of support as, say, those diagnosed with breast or prostate cancer, who receive support from trained breast or prostate cancer specialist nurses. Rare cancers affect six or less people per 100,000 each year, while less common cancers have an incidence rate of 12 or less per 100,000. GPs are generally the first stop for a person experiencing symptoms that might result in a cancer diagnosis; however, the rarity of these types of cancer makes it harder for a GP to know exactly what they are looking at. They may not have seen this collection of symptoms before or the symptoms may be ambiguous and could have a number of explanations. If they are the only GP in a rural practice, or one of just a few, it makes it harder to talk things through with colleagues to get advice on which test to order to help with potential diagnosis.

We must back medical professionals to better support these patients, so the committee has recommended development of specific clinical guidelines for GPs for rare and less common cancers. Even if a GP has an inkling they know what is causing these symptoms, they are more likely to investigate the cause of the symptoms first and refer to one specialist, when multiple specialists could be needed for a correct diagnosis. Indeed, Meredith Cummins from NeuroEndocrine Cancer Australia said that NETs symptoms were so vague that they could be anything. This ambiguity means diagnosis can be delayed for up to seven years, by which time 60 per cent of NETs patients have progressed to stage 4 disease.

Experience tells us that early diagnosis and cancer screening programs have a direct impact on cancer survival statistics, but the lack of understanding of rare cancers means late diagnosis and lack of screening is more the norm. However, we heard evidence that could turn the status quo for rare cancers around. The committee recommended such patients should receive prompt, appropriate and affordable diagnostic testing. This includes equitable patient assisted travel schemes across all states and territories, better access to MRI, PET and CT scans, increased access to genomic testing and a complete ban on genetic discrimination in life insurance so more people are better informed about their health outcomes. Together, these initiatives allow better access to precision medicine, and that means patients would have a treatment plan developed specifically for their individual cancer. We already know how effective precision medicine can be in treating rare cancers, through the highly successful ZERO Childhood Cancer program. I'm pleased the government also sees value in these important diagnostic schemes and announced in the recent budget a new MBS item for PET and CT imaging for rare and less common cancer patients.

Australia's reputation as a leader in producing high-quality data in clinical trials is hampered by our location and smaller population. Lower incidence of rare cancers means smaller numbers of trial participants, making Australia a less attractive option for pharmaceutical companies or organisations sponsoring the trials. We must elevate Australia's standing in this space because clinical trials are the best way to gather the evidence needed to make those breakthroughs we all want in cancer research. The committee has made a number of recommendations to improve equitable access to clinical trials. These include promoting better access to novel medicine, both within clinical trials and developed as a result of trial activity; making it easier for rare cancer patients to access clinical trials both here and overseas; and extending funding for the ZERO Childhood Cancer program beyond next year. I welcome the government's investment in last month's budget in the National One Stop Shop to manage clinical trials and human research, and hope this is the start of Australia making significant inroads in the research space.

We heard frequently about the incredible rare cancer researchers we have in Australia but also the need to boost their research capacity. The committee acknowledged the additional funding outlined in the recent announcement in the budget of the 10-year Low Survival Cancers Mission, along with additional funding through the Medical Research Future Fund, including funding specifically for research into treatments for DIPG and other childhood cancers. However, there are still significant gaps in Australian research into rare and less common cancers. This research needs to be a priority, if we are to address inequities faced by people diagnosed with rare and less common cancers. Similarly, providing early access to drugs such as DFMO, approved for the treatment of high-risk neuroblastoma in the US, but still months—if not years—away here, must be considered to save the lives of our rare cancer patients, and, in this case, often our youngest Australians.

We must close the survival gap for rare cancer patients. This report plots a clear pathway to achieve this aim, and I commend the report to the Senate.