Referral and conduct of the inquiry
On 29 November 2016, the Senate established the Select Committee into
Funding for Research into Cancers with Low Survival Rates (the committee) to
inquire and report by 28 November 2017 on:
- the current National Health and Medical Research Council [(NHMRC)]
funding model, which favours funding for types of cancer that attract more non‑government
funding, and the need to ensure the funding model enables the provision of
funding research into brain cancers and other low survival rate cancers;
- the obstacles to running clinical trials for brain cancers
and other cancers with relatively lower rates of incidence, with regard to:
- funding models that could
better support much-needed clinical trials, and
- funding support for campaigns
designed to raise awareness of the need for further research, including
- the low survival rate for brain cancers, lack of
significant improvement in survival rates, and strategies that could be
implemented to improve survival rates and;
- other relevant matters.
The committee received and published 326 submissions, listed at Appendix
The committee took evidence from 117 witnesses over seven days of public
Sydney on 18 and 19 May 2017;
Brisbane on 6 June 2017;
Melbourne on 7 June 2017;
Canberra on 8 June 2017;
Melbourne on 4 August 2017; and
Canberra on 29 August 2017.
The witnesses who appeared at these hearings are listed at Appendix 2.
The committee also received a number of additional documents, and answers
to questions on notice also listed at Appendix 1.
Structure and scope of this report
This report comprises six chapters:
chapter 1 outlines the conduct of the inquiry, and the
definitions for low survival rate (LSR) cancers, distinct from 'rare cancers';
chapter 2 examines in particular funding for LSR cancers;
chapter 3 discusses clinical trials for LSR cancers;
chapter 4 discusses paediatric and youth cancers; and
chapter 5 considers ways in which survival rates can be increased
for LSR cancers.
In responding to the terms of reference for the inquiry, submitters and
witnesses to the committee referred both to LSR cancers and rare cancers.
For example, the Low Survival Cancers Alliance, comprising 11
organisations including the Cancer Council Victoria and the Leukaemia
Foundation, defined LSR cancers as:
...those with five year survival less than or equivalent to 30%
and include mesothelioma, pancreas, liver, lung, oesophagus, gallbladder,
brain, adult acute myeloid leukaemia, stomach, some neuroendocrine cancers
(NETs) and cancer of unknown primary.
This definition was also put forth by other submitters, including Cancer
and the Australasian Gastro‑Intestinal Trials Group.
By contrast, Cancer Australia stated that '[a]s there is no standard
definition' of LSR cancers, and focussed in its submission 'on eight cancer
types which all have a <50% five-year relative survival rate'.
Those cancers identified were ovarian, stomach, acute myeloid leukaemia, brain,
oesophageal, lung, pancreatic and mesothelioma cancers.
The reference to less than 50 per cent survival rate was also identified
by the Australian Institute of Health and Welfare (AIHW).
In its submission, AIHW identified that in 2009–2013, the following cancers fell
into that category: mesothelioma, pancreas, unknown primary site, lung, liver,
gallbladder, oesophagus, brain, acute myeloid leukaemia and stomach.
The committee has accepted this latter definition of LSR cancers for the
purpose of this report, that is cancers with less than a 50 per cent survival
The committee also notes that Rare Cancers Australia identified the
distinction between 'less common' and 'rare cancers':
‘Less common’ cancers as those with an incidence of
between 6 and 12 (inclusive) per 100,000 Australians per annum.
‘Rare cancers’ are defined as those with an incidence
of less than 6 per 100,000 Australians per annum – a total of 186 cancer types
have been defined as rare.
The committee acknowledges the distinction between LSR, less common and
rare cancers. However, the committee will refer only to LSR cancers unless
A note on the NHMRC funding model
Since the inquiry was first announced, the NHMRC has made certain
changes to its funding structure. Most of the submissions and some of the
evidence received at the committee's public hearings were provided in the
context of the former NHMRC funding structure.
Unless specified, the committee believes that the evidence it has
included in its report is also reflective of the current funding structure.
The changes that were announced on 25 May 2017,
and the effect of these changes, is discussed in more detail in chapter 2.
Recent funding announcements
Funding for rare cancers
On 24 August 2017, the Australian government announced that Australian
children would have access to AIM BRAIN, a four year study with the aim of
transforming the brain tumour classification, treatment and survival of
children with brain cancer.
Further information about this announcement appears in chapter 3.
The government also announced $13 million of funding for competitive
research grants through the Medical Research Future Fund (MRFF), which is
targeted towards rare cancers and rare diseases.
Further information about this announcement appears in chapter 2.
The Australian Brain Cancer Mission
On 29 October 2017, the Australian government announced the Australian
Brain Cancer Mission, a $100 million fund to defeat brain cancer.
Further information about this fund appears at chapter 5.
The committee thanks individuals and organisations that contributed to
the inquiry, and takes this opportunity to express its gratitude to those
individuals who took the time to share their personal stories with the
The committee appreciates that for some, sharing their personal
experiences was difficult and upsetting. The committee was deeply moved by
these stories and the inquiry has benefitted from their being shared.
Notes on references
References to the Committee Hansard may be references to the
proof transcript. Page numbers may differ between proof and official transcripts.
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