Catryna Bilyk (Tasmania, Australian Labor Party) Share this | Link to this | Hansard source

I present the report of the Select Committee into Funding for Research into Cancers with Low Survival Rates, together with the Hansard record of proceedings and documents presented to the committee.

Ordered that the report be printed.

I move:

That the Senate take note of the report.

For many years, I felt like a lone voice in the Senate talking about brain cancer and other low-survival cancers.

While others have paid tribute to individuals who have suffered from these diseases, in general these cancers have not received the attention that they deserve. But the inquiry by the Select Committee into Funding for Research into Cancers with Low Survival Rates has finally given the issue the attention it deserves. I have been proud to be the chair of this committee.

It's rare that you see tears at a Senate public hearing. In fact, many committee hearings can be extraordinarily dry affairs; the hearings for the Select Committee into Funding for Research into Cancers with Low Survival Rates were anything but. They were full of love, loss and, most importantly, overwhelmingly, of hope. The tears weren't always from those giving evidence. People in the audience and even committee members were seen to shed a tear.

On the morning of the first public hearing, having heard from cancer patients and their families, some of my committee colleagues voiced shock to me about the heart-wrenching nature of the evidence given. At the end of the day, what we do in this place, in this parliament, is for the good of the Australian people. It's to make their lives a little better than they otherwise would be. This inquiry put this fact into stark relief.

We heard from cancer patients, their loved ones, carers, nurses and doctors. Patients who may not have much time left used their precious time to tell us of their experience. We heard from the parents of small children who were bravely fighting brain cancers and other low-survival cancers, and we heard from the parents of children for whom, sadly, the fight was already over.

Every year, approximately 35 children, a classroom of children, as I have stated time and time and time again in this place, will die from brain cancer in Australia. That's more than any other childhood disease. We heard from absolutely brilliant researchers, each of whom get up in the morning with the aim of making sure that the survival rates for low-survival cancers improve.

The knowledge and expertise of researchers, medical practitioners and advocacy groups greatly informed the committee of the issues they face in research and treatment; researchers who envisage that in the future cancer patients with stomach, brain, oesophageal, lung, pancreatic, liver and gall bladder cancers as well as many other cancers would have hope—hope that there will be treatment options that lead to good outcomes and hope that these cancers will have a survival rate similar to breast cancer or leukaemia, for which the medical profession has made outstanding improvements over the last few decades.

On behalf of the committee, I would like to thank each and every one of the 117 witnesses who appeared before us. I thank you for your bravery, for your honesty, for your vision and hope, and for giving up your very precious time. The personal experiences of patients, their parents and children and their carers have been invaluable, and sharing your stories could not have been easy.

Over the past 12 months, the committee received over 300 submissions from a range of stakeholders and held seven public hearings on various days in Sydney, Brisbane, Melbourne and Canberra. The committee made 25 recommendations that have been adopted, I'm very happy to say unanimously, by the committee. The committee found that there is an inadequate amount of funding allocated to research into low-survival-rate cancers.

We all understand that there is a finite amount of government money available for all forms of medical research, and the committee welcomes the government's recent announcements of $13 million for competitive research grants from the Medical Research Future Fund for 'under-researched health priorities such as rare cancers and rare diseases' and the establishment of the Australian Brain Cancer Mission, a $100 million collaboration between government, the Cure Brain Cancer Foundation and the Minderoo Foundation. There's still $20 million to find, but I think that's likely to come through philanthropy as well.

However, the committee considers that a number of other changes can be made that will benefit low-survival-rate-cancer patients as well. For example, the committee has recommended that the National Health and Medical Research Council consider identifying low-survival-rate cancers as a National Health Priority Area in its next corporate plan. This would acknowledge that low-survival-rate cancers are a major national health issue that makes a significant contribution to the burden of disease, and it could result in significant additional research funding through the NHMRC.

The committee also recommended the implementation of an Australia-wide strategy to increase five-year survival rates for low-survival-rate cancers to above 50 per cent by 2027. Such a strategy will require the participation and commitment of the federal, state and territory governments, but a targeted approach with specific goals is essential if significant improvements are to be made for patients with low-survival-rate cancers.

The development of the strategy should:

The progress of the strategy should be reported annually to COAG and be made available to the public.

The committee made numerous other recommendations intended to improve survival rates by increasing research into low-survival-rate cancers and improving support for cancer patients and their families. For example, the committee recommended:

The committee heard about obstacles to establishing and accessing clinical trials in Australia such as:

For these reasons, the committee has also made recommendations to improve access for low-survival-rate-cancer patients to clinical trials such as further streamlining ethics and government approval processes; making information on clinical trials more user-friendly; facilitating innovative and flexible clinical trial design; and allowing trial participants to access patient travel subsidy schemes.

We know low-survival-rate cancers can have a particularly devastating impact on children and young people and their families. In addition to the physical and emotional toll, children miss school and parents often have to leave employment to provide full-time care for their children. Many parents told the committee they'd had extreme difficulty gaining the carer's pension to look after children with a terminal illness. Older patients told the committee of their difficulty in accessing the disability support pension. Consequently, the committee recommends that the Australian government further simplifies and streamlines the application process for low-survival-rate patients and their carers in seeking to access the disability support pension or carer allowance or payment.

The committee was also told that transition from paediatric to adult oncology care is sometimes problematic and abrupt. We need to ensure there's a seamless continuation of treatment for these young people and that their health is not impacted by bureaucratic issues within treatment facilities. The committee has therefore recommended that the Australian government leads a process through COAG to ensure that this transition occurs in a coordinated way that preserves continuity and quality of care.

Collectively, the committee's recommendations represent a suite of measures which I hope will increase research into low-survival-rate cancers and result in significantly improved outcomes for patients with these cancers. My contribution today barely scratches the surface of the complex detail contained in this report, and I encourage anyone with an interest to read it.

I would also like to express my sincerest thanks to the committee secretariat, in particular committee secretary Sophie Dunstone and senior research officer Nicola Knackstredt, who worked in a knowledgeable, professional and extremely well organised manner to guide the committee through such a complex inquiry. I would also like to thank my fellow committee members. Committee work is one area where senators across party lines can work cooperatively. My fellow committee members undertook this inquiry with the seriousness and diligence that this inquiry so richly deserved. We saw the best of the Senate during the conduct of this inquiry. (Extension of time granted) It's my hope that each of these recommendations, large and small, can be implemented by the government because each of them will make an improvement to the lives of people with low-survival-rate cancers and hopefully it will result in an Australia where current low-survival cancer patients can expect quality and longevity of life comparable to those with cancers that have higher survival rates. It's with great pleasure that I commend the report to the Senate.

Stirling Griff (SA, Nick Xenophon Team) Share this | Link to this | Hansard source

I too commend this report of the Select Committee on Funding for Research into Cancers with Low Survival Rates. It is a comprehensive body of work with, as Senator Bilyk mentioned, 25 recommendations that will have a profound impact on the wellbeing of those with what are now known as low-survival cancers. The aim is of course to move these cancers from being low-survival to survivable. Broadly the recommendations cover research funding and coordination; clinical trial awareness, access and approvals; improving early detection and identification; repurposing drugs; fast-tracking innovative treatment and particularly the utilisation of genomic research; patient care; costs; and navigation through the disease processes.

All of the recommendations came out of expert medical and scientific evidence that was provided and the personal experiences of cancer sufferers and their families and friends. The hearings, as Senator Bilyk mentioned, were heart-wrenching. All senators—in fact, the majority of the people in the room—were wiping away the tears at the first one. It was a very emotional time for everyone. Many witnesses found it tough to tell their story—or that of their loved one, though they were compelled to do so in order to honour the memory of their loved one and to agitate for a better outcome for others.

Being a member of this inquiry opened my eyes. Like other Australians, I knew cancer was bad and some cancers were worse than others, but I had no idea there was so much inequality in terms of treatment options and research dollars. I had no idea that some cancers, such as pancreatic cancer, are as deadly now as they were a generation ago. It is incredible to think that at a time when we have made so many remarkable strides in so many fields of medical research the prognosis for a host of cancers has not improved. For every 100 people diagnosed with mesothelioma, only six people will survive more than five years. For every 100 people diagnosed with pancreatic cancer this year, fewer than eight people will still be here in five years time. Only one in five people will survive a brain cancer diagnosis, and what makes this even more tragic is that this is one of the most common cancers in children and young adults.

Low-survival cancers are defined as those where fewer than 50 per cent of patients survive five years past diagnosis. There are only about 10 of these cancers, but they account for 30 per cent of all deaths. And you know what's even more shocking? These low-survival cancers only receive about six per cent of research funding. Some low-survival cancers are also rare cancers. There are about 186 rare cancers, and the two combined account for almost half of all cancer deaths in Australia. These killer diseases are stuck in a research and treatment no-man's-land. Research grants are usually allocated based on population need and previous research successes, but when it comes to rare and low survival cancers, there are too few research successes to create the sort of momentum that might lead to more funding and more breakthroughs.

We know from what has been achieved with breast cancer and prostate cancer that investment in research, surveillance and public education can turn these harsh statistics around. Of 100 men diagnosed with prostate cancer this year, 95 will still be alive in five years time. Ninety per cent of people with breast cancer or melanoma, which was once the scariest of killers, will beat their diagnosis and be with us for many, many years to come. It is crazy, isn't it, that you might think yourself lucky to get prostate cancer and not pancreatic cancer?

We would all want every newly diagnosed patient to have such a positive prognosis and hope for the future but, as this inquiry highlighted, even with cancer, there are the haves and the have-nots. There are a number of reasons for this, but it essentially boils down to numbers. There are relatively few people who can be studied and enrolled in clinical trials for rare and low-survival cancers and, hence, not a big enough market of potential patients to make it worthwhile for pharmaceutical companies to invest in drug development. There are also very few survivors to push for change and to fight for more funding, including philanthropic funding, which is a crucial source of additional income for researchers and patient support services—and so survival rates have stalled.

But we do not have to keep accepting this situation. We have the power to turn this around. We would like to see the National Health and Medical Research Council make low-survival cancers a national health priority area so that this gets a larger slice of the NHMRC's existing funding pie. We also need to rethink the one-size-fits-all approach to cancer treatment and to eliminate the regulatory hurdles that prevent patients accessing the most appropriate therapy for their particular tumours. The standard approach to cancer treatment in Australia is to treat cancers by type—'We treat colon cancer this way and we treat ovarian cancer that way'—but more and more research shows that the same type of cancer can have a variety of genetic causes and so the best approach is a much more individualised one. This is a no-brainer, but we also need to better educate GPs and the community about the symptoms of low-survival cancers, because early detection can make a life and death difference. According to Rare Cancers Australia's submission, up to 93 per cent of women are likely to survive more than five years if ovarian cancer is detected at an early stage. However, only 15 per cent of all cancers are diagnosed at an early stage.

There is plenty government can do—and do today, in fact—to start giving hope and a better prognosis to the thousands of Australians who will, in the coming year, be diagnosed with rare and low-survival cancer. I would urge government to respond quickly and accept all 25 of the committee's recommendations, because delay would literally mean the difference between life and death for many thousands of Australians.

Thank you to the chair, Senator Bilyk, for your amazingly passionate advocacy and for bringing about this inquiry. Thank you to the secretariat for your organisational management and reporting expertise. Lastly, and most importantly, I want to thank the many individuals—and their families—affected by cancer who wrote submissions and presented in person at the inquiry. I know how painful it was for some of you to speak on the suffering of your loved ones. I want to assure you that the Senate recognises your sacrifice in speaking, and we will work together to make low-survival cancers a thing of the past. I seek leave to continue my remarks later.

Leave granted; debate adjourned.