2.160 The committee recommends that the Chief Executive Officer
of the National Health and Medical Research Council considers identifying low
survival rate cancers as a National Health Priority Area in the upcoming
2018-19 Corporate Plan.
2.164 The committee recommends that the National Health and
Medical Research Council introduces the option for extensions to the duration
of funding to recipients of research grants, provided that these recipients
satisfy certain performance criteria.
The committee recommends that the Australian government improves
AustralianClinicalTrials.gov.au so it is more accessible and user-friendly.
3.91 The committee recommends that state and territory
allowing low survival rate cancer patients participating in
clinical trials to access patient travel subsidy schemes; and
agreeing on consistent subsidy rates based on the distance and
method of travel, and the average cost of accommodation in the city in which
the patient is participating in the trial.
The committee recommends that Australian governments improve access to
international clinical trials for people with low survival rate cancers,
exploring ways to reduce the financial barriers to accessing
international trials to the extent possible; and
further developing the existing capacity for international
collaboration on trials.
The committee recommends that Australian governments, as a
priority, further streamline ethics and governance approval processes for
clinical trials, particularly where those processes differ between states and
territories, and public and private research institutions.
The committee recommends that the National Health and Medical
Research Council develops a standard template and associated guidelines,
including timeframes, for ethics and other governance approvals for
consideration and possible adoption by each state and territory.
The committee recommends that, through the Council of Australian
Governments Health Council, the Australian government leads a process to ensure
that arrangements for transitioning children and young people from paediatric
to adult oncology services occurs in a consistent and co-ordinated way that
preserves continuity and quality of care in the best interests of each
The committee recommends that the Australian government
undertakes communication activities targeted at the public with the objective
of reducing the amount of time taken to detect and diagnose low survival rate
5.25 The committee recommends that the Australian
government works in collaboration with the Royal Australian College of General
Practitioners and the Australian Medical Association to improve awareness of
low survival rate cancers amongst general practitioners, including through
continuing professional development.
The committee recommends that the Australian government, in collaboration
with state and territory governments:
considers expanding the Australian Cancer Database to capture all
cancers, including benign tumours of the brain and other parts of the central
in so doing, consults with medical researchers to identify what
clinical and lifestyle data might be included in order to benefit oncology
addresses current barriers to data collection and considers ways
in which data collection can be improved across Australia, in both public and
private health settings.
The committee recommends that the Australian government gives
serious consideration to implementing a national network medical and population
biobank that includes tumour samples and relevant clinical and lifestyle data
associated with each tumour sample.
The committee recommends that the Australian government ensures ongoing
funding for genomic research into low survival rate cancers.
The committee recommends that the Australian government implements any
recommendation from the Medical Services Advisory Committee to list genetic
tests for low survival rate cancer patients on the Medicare Benefits Schedule
so that these tests are routinely available to these patients and reimbursed.
The committee recommends that the Therapeutic Goods Administration, if
necessary following the medicines and medical devices review, and the
Pharmaceutical Benefits Advisory Committee:
(re-)examine their assessment processes and the appropriateness
of those processes for innovative treatments for low survival rate (LSR) cancers,
such as immunotherapies; and
pending that examination, consider adopting more flexible and
innovative approaches to approving innovative treatments for LSR cancers and
assessing them for listing on the Pharmaceutical Benefits Scheme.
The committee recommends that the Australian government ensures funding
is available to researchers investigating whether existing drugs may be
suitable for treating low survival rate cancers.
The committee recommends that the Australian government works with
industry to consider a mechanism to repurpose drugs.
The committee recommends that the Australian government considers a
mechanism to permit access to and properly supervise use of off-label drugs for
low survival rate cancer patients without further treatment options, on
The committee recommends that the Therapeutic Goods Administration and
Pharmaceutical Benefits Advisory Committee examine the appropriateness of their
approval and assessment processes for existing drugs repurposed for use in low
survival rate cancers.
The committee recommends that the Australian government considers
whether the Medical Services Advisory Committee and Pharmaceutical Benefits
Advisory Committee processes can be streamlined where a diagnostic test and
treatment for a low survival rate cancer are co-dependent.
The committee recommends that the Australian government, in conjunction
with its state and territory counterparts, works to improve access to
specialist cancer care co-ordinators or nurses for low survival rate cancer
patients in every state and territory.
The committee recommends that the Australian government asks the Medical
Services Advisory Committee to review the criteria for reimbursement of ongoing
diagnostic testing for low survival rate cancer patients.
The committee recommends that the Australian government further
simplifies and streamlines the application process for low survival rate cancer
patients and their carers when seeking to access the Disability Support
Pension, or carer allowance or payment.
The committee recommends that the federal, state and territory
governments develop and implement a comprehensive Australia-wide strategy to
increase 5-year survival rates for low survival rate cancers to above 50 per
cent by 2027:
taking into account the recommendations in this report;
consulting with researchers, clinicians, patients and patient
considering the roles of research, early diagnosis and access to
assessing the applicability of international approaches, such as
the Recalcitrant Cancer Research Act of 2012 (US), to the Australian
The committee recommends that annual progress reports on the development
and implementation of an Australian strategy to improve survival rates for low
survival rate cancers are provided to the Council of Australian Governments
Health Council and made publicly available.
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