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.
Senator BILYK: 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:
take into account the suite of recommendations in the committee’s report;
include consultation with researchers, clinicians, patients and patient groups;
give consideration to the roles of research, early diagnosis and access to medicines; and
assess the applicability of international approaches such as the US Recalcitrant Cancer Research Act of 2012 to the Australian context.
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:
a public awareness campaign and professional development for doctors to improve the detection and diagnosis of low-survival-rate cancers;
the possibility of expanding the Australian Cancer Database and establishing a national biobank so that medical researchers have access to the data and tissue they need;
ongoing funding for genomic research into low-survival-rate cancers;
changes to TGA, MSAC and PBAC processes to improve patient access to diagnostic tests and both new and repurposed medicines;
improved access to specialist cancer care coordinators or nurses for low-survival-rate cancer patients in every state and territory; and
simplification and streamlining of the application process for low-survival-rate-cancer patients and their carers trying to access the DSP or carer payments.
The committee heard about obstacles to establishing and accessing clinical trials in Australia such as:
delays in ethics and government approvals;
the lack of information about trials;
ineligibility against trial criteria; and
the tyranny of distance for regional and remote Australians, who have to travel to participate in trials.
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.