Chapter 1Introduction
1.1Whilst cancer outcomes in Australia are amongst the best in the world, this inquiry has made clear that these outcomes are not felt equally amongst all Australian cancer patients.
1.2Although each rare and less common cancer individually impacts a small number of Australians, collectively, a large number of people are affected, with approximately 52 000 Australians diagnosed with a rare or less common cancer each year.
1.3This means that 30 per cent of people diagnosed with cancer in Australia will have a rare or less common cancer. Yet these cancers disproportionately account for 42 per cent of all cancer deaths – termed by Medicines Australia as the ‘survival gap’.
1.4Those diagnosed with rare or less common cancers do not always receive the same level of support, or have access to the same diagnosis and treatment options, as those with more common cancers, having, at times, deadly consequences.
1.5The purpose of this inquiry is to explore the factors contributing to the inequitable diagnosis, treatment, research and support for those affected by rare and less common cancers, and to consider measures to address these issues to ease patients’ cancer journeys, improve their health outcomes, and close the survival gap.
Referral of the inquiry
1.6On 14 June 2023, the following matter was referred to the Senate Community Affairs References Committee (the committee) for inquiry and report by the first sitting Thursday in March 2024:
Equitable access to diagnosis and treatment for individuals with rare and less common cancers, including neuroendocrine cancer, with particular reference to:
(a) barriers to screening and diagnosis, including the impact of factors such as:
(i) geographic location,
(ii) cost,
(iii) cultural and language barriers,
(iv) type of cancer, and
(v) availability of treating practitioners;
(b) barriers to accessing appropriate treatment;
(c) the adequacy of support services after diagnosis;
(d) the adequacy of Commonwealth funding for research into rare, less common and neuroendocrine cancer; and
(e) any other related matters.
1.7On the 26 February 2024 the Senate granted an extension of time to report until 16 May 2024.
Conduct of the inquiry
1.8Details of the inquiry were published on the committee’s website and the committee invited a number of organisations and individuals to lodge submissions. The committee received 149 submissions which are listed at Appendix 1.
1.9The committee also held five public hearings, and two site visits, across Australia:
31 January 2024 – Sydney, New South Wales;
1 February 2024 – Melbourne, Victoria;
20 February 2024 – Hobart, Tasmania (including a site visit);
1 March 2024 – Canberra, Australian Capital Territory; and
9 April 2024 – Adelaide, South Australia (including a site visit).
1.10A list of witnesses who gave evidence at the public hearings is available at Appendix 2.
1.11In this report, references to Committee Hansard are to both proof and official transcripts. Page numbers may vary between proof and official transcripts.
Structure of this report
1.12This chapter sets out general information outlining the conduct of the inquiry and provides background information relating to rare and less common cancers, and cancer control policy in Australia.
1.13Chapter 2 discusses issues relating to the diagnosis and screening of rare and less common cancers. It examines the challenges in accurately and swiftly diagnosing these cancers, the implications of mis- and late diagnoses, as well as options to address diagnostic challenges. The chapter then considers screening options and issues, particularly in relation to genomic screening and testing.
1.14Chapter 3 focuses on access to treatment and clinical trials for patients with rare and less common cancers. It provides an overview of Australia’s treatment landscape, including the existing processes that regulate approval and access to treatment and clinical trials.
1.15Chapter 4 discusses the need for a wide range of increased and improved supports for rare and less common cancer patients and their loved ones, following a diagnosis.
1.16Chapter 5 explores structural barriers impacting the equitable access of diagnosis and treatment services for rare and less common cancer patients. In particular, it considers the impacts of health literacy, financial toxicity, geographic variation and health workforce challenges. It also explores access challenges pertaining to First Nations and culturally and linguistically diverse (CALD) communities.
1.17Chapter 6 explores Australia’s research and clinical trials landscape. It explores mechanisms to address gaps in funding for research and examines ways to increase clinical trial activity in Australia, with the view of improving patient outcomes.
1.18Chapter 7 discusses cancer data in Australia, including the need for a national cancer data framework, and other key data issues such as the changing nature of cancer classification, the lack of data regarding cancer stage at diagnosis, accessibility of data, privacy considerations for First Nations communities, and views of the Australian Government’s My Health Record system.
Acknowledgements
1.19The committee thanks all those who contributed to the inquiry by making submissions, providing additional information, appearing at public hearings and facilitating site visits.
1.20In particular, the committee would like to acknowledge the individuals who shared their lived experiences of rare and less common cancers, including those experiencing these illnesses themselves, as well as those who shared how their loved ones have been affected.
1.21These personal testimonies have been vital in deepening the committee’s understanding of the impact of rare and less common cancers on the Australian community, and have helped inform the recommendations of this report which aim to improve outcomes for patients and their families, into the future.
What is cancer?
1.22Cancer Australia, an Australian Government entity established in 2006 which aims to ‘reduce the impact of cancer, address disparities and improve outcomes for people affected by cancer by leading and coordinating national, evidence‑based interventions across the continuum of care’, explains that cancer is:
… a disease of the cells, which are the body’s basic building blocks. Cancer occurs when abnormal cells grow in an uncontrolled way. These abnormal cells can damage or invade the surrounding tissues, or spread to other parts of the body, causing further damage.
1.23It explained that most cancers start in a particular organ, which is known as the primary site or primary tumour. Tumours can be benign (not cancer) or malignant (cancerous). Cancer spreads when cancer cells break off the primary tumour, enter the bloodstream or lymphatic system, and travel to a new organ to form secondary tumours. This is called metastasis.
1.24According to Cancer Australia, there are several different types of cancer which can be broadly grouped into the following categories:
carcinoma: cancer that begins in the skin or in tissues that line or cover internal organs for example, melanoma
sarcoma: cancer that begins in bone, fat, muscle, blood vessel, or other supportive or connective tissue - for example, osteosarcoma
leukaemia: cancer that begins in the tissues that make blood cells, such as the bone marrow - for example, acute myeloid leukaemia
lymphoma and myeloma: cancers that start in cells of the immune system - for example, Hodgkin lymphoma and multiple myeloma
central nervous system cancer: cancer that begins in the brain or spinal cord - for example, glioma.
The disease burden of cancer in the Australian community
1.25According to the Department of Health and Aged Care (the department), cancer is responsible for Australia’s largest disease burden and is a leading cause of death.
1.26Currently, there are over one million Australians who are living with, or who have lived with cancer. In 2022, it is estimated that about 162 000 new cases of cancers were diagnosed in Australia, and that around 55 000 people will have died from cancer.
1.27The department outlined that whilst cancer mortality rates in Australia have been steadily decreasing, incidence rates for all cancers, including rare and less common cancers, have been increasing. It explained that the reduction in mortality rates is partly due to increasing investment and participation in screening programs, as well as changes to personal and behavioural risk factors.
1.28Cancer Australia also recognised that whilst cancer outcomes in Australia are amongst the best in the world, this is not the story for all Australians, with significant disparities in cancer outcomes experienced by specific population groups including First Nations people.
1.29According to the National Aboriginal Community Controlled Health Organisation (NACCHO), cancer is the leading cause of death for Aboriginal and Torres Strait Islander people, and diagnosis rates are significantly higher in Aboriginal and Torres Strait Islander communities compared to other Australians.
1.30Data from the Australian Institute of Health and Welfare (AIHW) indicates that First Nations people have a slightly higher rate of cancer diagnosis but are approximately 40 per cent more likely to die from cancer than other Australians.
1.31Cancer Australia also outlined that disparities in cancer outcomes exist between other population groups in Australia, and that these differences are strongly associated with the determinants of health including ethnicity, language, location, socioeconomic group, education, health literacy and other factors. These factors will be explored further throughout this report, particularly in Chapter 5 – Structural barriers to equitable care.
Rare and less common cancers
1.32The AIHW defines rare cancers as those that have less than six incidents per 100000 people per year, and less common cancers as those that have between six and 12 incidents per 100 000 people, per year.
1.33The department explained that examples of rare cancers include:
gallbladder cancer (3 cases per 100 000 people per year);
soft tissue sarcoma (6 incidents per 100 000 people per year); and
penile cancer (0.38 incidents per 100 000 people per year).
1.34This is compared to common cancers such as lung (44 incidents per 100000 people per year) or breast cancer (67 incidents per 100 000 people per year).
1.35Other examples of rare and less common cancers were also outlined by submitters, noting that this list is not exhaustive:
Adenoid cystic carcinoma
Appendix cancer
Ocular (eye) melanoma
Pseudomyxoma peritonei tumour
Small bowel cancer
Upper tract urothelial cancer
Neuroendocrine cancer
Mesothelioma
Acute myeloid leukaemia
Brain cancer
Stomach cancer
Ovarian cancer
Pancreatic cancer
Testicular cancer
Neuroblastoma
Head and neck cancers
Blood cancers
Diffuse Intrinsic Pontine Glioma (DIPG)
1.36Despite falling outside of the AIHW’s definition of rare cancer, the department highlighted that all cancer diagnosed in children and teenagers is classified as rare. This is discussed further in the childhood cancer section below.
A note on the changing classification of cancer
1.37Some inquiry participants noted that with improved technology and increased understanding of cancer in recent decades, the way cancer is classified is changing – moving away from descriptions based on tumour location, to classification of subtypes at the genetic and molecular level.
1.38Whilst this issue will be discussed further throughout this report, RareCancers Australia explained that cancers that were previously considered common, are becoming increasingly rare through the discovery of multiple rare sub-types linked to the discovery of genetic mutations. It provided the following example regarding lung cancer:
People with lung cancer, for example, previously understood to be a common cancer, used to be diagnosed as one of two possibilities – small cell or non-small cell lung cancer. Now, we understand there are over 30 different sub-types associated with lung cancer – many of which are rare.
Rates and statistics of rare and less common cancers
1.39Rare Cancers Australia outlined that whilst each rare or less common cancer impacts a small number of people, approximately 52 000 Australians are diagnosed with a rare or less common cancer each year, making up 30 per cent of all cancer diagnoses in Australia.
1.40Further, several submitters highlighted that rare and less common cancers disproportionately account for approximately 42 per cent of all cancer deaths.
1.41In terms of survival rates, Cancer Australia reported that whilst five-year relative survival for all cancers has improved over the past 30 years, increasing from 52.2 per cent in 1989–93, to 70.1 per cent in 2014–18, these improvements have not manifested consistently across all cancers.
1.42Cancer Australia also noted that for some rare and less common cancers, including mesothelioma and cancers of the lip, blood, and brain, there has been little improvement in survival, and pointed out that for rare cancers such as eye, urethral, and bladder cancers, survival may have actually decreased.
1.43Noting the sparsity of available data on rare and less common cancers, NACCHO submitted that data which is available indicates that Aboriginal and Torres Strait Islander people are disproportionately affected by rare and less common cancers when compared to other Australians.
1.44NACCHO also outlined that the disproportionate impacts of rare and less common cancers in Aboriginal and Torres Strait Islander communities are also observed in higher mortality rates. For example, it highlighted that between 2015 and 2019, the age-standardised mortality rate for liver cancer in Aboriginal and Torres Strait Islander people was 15.7 per 100 000 people, whilst for other Australians it was 6.7 per 100 000 people.
1.45NACCHO submitted that data indicates that what constitutes rare and less common cancers for non-Indigenous Australians, are common cancers for Aboriginal and Torres Strait Islander people. It explained that Aboriginal and Torres Strait Islander cancer incidence data shows that only one type of cancer (bladder cancer) meets the definition of a less common cancer, and none meet the definition of a rare cancer.
Childhood cancers
1.46According to the Sydney Children’s Hospital Network, each type of childhood cancer is rare or uncommon cancer.
1.47The Children’s Cancer Institute explained that childhood cancers are classified as rare diseases due to their low prevalence and diverse and unique characteristics, leading to even rarer sub-types that require distinct treatments.
1.48Children’s cancers include, for example:
Brain and central nervous system tumours (including gliomas)
Neuroblastoma (develops from nerve tissue)
Leukaemia (cancer of the blood)
Lymphoma (affects the lymph nodes)
Bone cancers (including osteosarcoma).
1.49The Children’s Cancer Institute also outlined that despite improved survival rates due to medical research advances, cancer remains the primary cause of disease-related death amongst Australian children.
1.50In terms of rates of childhood cancers in Australia, the Sydney Children’s Hospital Network reported:
The incidence rate of individual childhood cancers ranges between 0.16 and 4.25 cases per 100 000 population per year.
Acute lymphoblastic leukaemia is the most common childhood cancer with an incidence rate of 4.25 cases per 100 000 per year.
Melanoma is the rarest childhood cancer with an incidence rate of 0.16 cases per 100 000 per year.
Over the period 1983 to 2015 there was a mean of 770 new cancer cases per year in children under 15 years of age in Australia.
Neuroendocrine cancer
1.51As outlined in a joint submission from Cancer Council Australia, the Cancer Nurses Society of Australia, the Clinical Oncology Society of Australia, Private Cancer Physicians of Australia, the Medical Oncology Group of Australia and the Lung Foundation Australia, the neuroendocrine system is a network of glands and cells that produce and release hormones throughout the body, and neuroendocrine tumours can form in these cells.
1.52NeuroEndocrine Cancer Australia explained that neuroendocrine cancers are:
… a complex group of tumours that develop predominantly in the digestive or respiratory tracts, but can occur in other areas of the body. These tumours arise from neuroendocrine cells. The main function of neuroendocrine cells in the body is to create, store and secrete a variety of peptides (little proteins) and hormones for normal bodily functions.
1.53Cancer Australia outlined that neuroendocrine cancer comprises a grouping of rare cancers (or ‘sub-types’) which can be found at sites around the body such as the small and large bowel, pancreas, lung, skin and adrenal gland.
1.54It noted that individually, the incidence rate for each neuroendocrine cancer sub-type meets the definition of rare or less common cancer, although collectively the incidence rate is above 12 cases per 100 000 population.
1.55According to Cancer Australia, an estimated 3.4 per cent of all new cancer diagnoses in 2022 were neuroendocrine cancers (equating to 5437 total new cases). Further, Cancer Australia reported that for the period of 2014 to 2018, there was a 51 per cent chance of survival for at least five years for individuals with neuroendocrine cancer.
The Australian Government’s role in cancer control
1.56The department submitted that the government provides ‘national leadership on cancer policy and research and recognises that improving outcomes for Australians living with cancer is a shared responsibility’. The department noted that this requires coordinated action including all levels of government, non-government organisations and the health and research sectors.
1.57The department submitted that the Australian Government is ‘determined to improve outcomes for people with the poorest cancer experiences and is exploring initiatives that will achieve equity in access for all Australians with cancer, regardless of cancer type’.
Australian Cancer Plan
1.58On 2 November 2023, the Australian Government released the Australian Cancer Plan (the Plan), a 10-year national framework that ‘will accelerate world-class cancer outcomes, experiences, and equity across the continuum of cancer care for all cancers’.
1.59The Minister for Health and Aged Care, the Hon Mark Butler MP (the Minister), outlined that the Plan aims to ‘improve prevention, screening, treatment, and management of all cancers for all people in Australia regardless of their background or where they live’.
1.60The Plan was developed by Cancer Australia, in consultation with states and territories, First Nations communities, clinicians, researchers, people affected by cancer and support organisations.
1.61A key priority of the Plan is improving outcomes for groups with the poorest cancer experiences, having a particular focus on First Nations people, and it covers all cancer types across the whole cancer journey, from prevention and early detection to treatment, recovery and end of life care.
1.62The Plan has six ‘strategic objectives’:
(1)Maximising cancer prevention and early detection;
(2)Enhanced consumer experience;
(3)World-class health systems for optimal care;
(4)Strong and dynamic foundations;
(5)Workforce to transform the delivery of cancer care; and
(6)Achieving equity in cancer outcomes for Aboriginal and Torres Strait Islander people.
1.63According to the Minister, the Australian Government has committed a total of $735.7 million from 2023–24, to support the implementation of the Plan.
Aboriginal and Torres Strait Islander Cancer Plan
1.64On 26 October 2023, the Aboriginal and Torres Strait Islander Cancer Plan was launched. According to the department, it was developed in co-design with the First Nations health sector and will be owned and delivered by NACCHO.
1.65The Aboriginal and Torres Strait Islander Cancer Plan states that it has been written to ‘change cancer experiences and create a new foundation for partnership in Australia’s national approach to cancer control’. The shared vision for the plan is:
Through collective community-led action and sustained partnerships, inequitable and avoidable differences between Aboriginal and Torres Strait Islander peoples and other Australians in cancer prevention, screening, treatment and supportive care will be addressed.
1.66The Aboriginal and Torres Strait Islander Cancer Plan notes that synergies exist between this plan and the broader Australian Cancer Plan. It states that ‘by working together, these two plans will achieve better outcomes for more Aboriginal and Torres Strait Islander peoples, their families and communities at a faster pace’.
Commonwealth funding for cancer control
1.67According to the department, between 2013–14 and 2022–23, total Commonwealth expenditure for cancer control activities is estimated to be more than $32.0 billion, which includes funding for cancer related item numbers under Medicare and the Pharmaceutical Benefits Scheme (PBS), cancer prevention, detection and support programs, health infrastructure, health and medical research, and the provision of some cancer treatments.
1.68The department also noted that the Australian Government provides funding to state and territories through the National Health Reform Agreement ‘to assist with the cost of delivering public health and hospital services’.
Commonwealth funding for cancer research
1.69The Australian Government also provides funding for cancer research projects and programs in Australia, including through the National Health and Medical Research Council (NHMRC), the Medical Research Future Fund (MRFF), Cancer Australia, the Australian Research Council, and the Department of Health and Aged Care. Commonwealth funding for cancer research is discussed further in Chapter 6 of this report.
National Health and Medical Research Council
1.70Between 2018 and 2022, the NHMRC committed approximately $221.6 million for 186 new research grants relevant to rare and/or and less common cancers.
1.71This equates to approximately 5 per cent of total NHMRC funding commitments, and 25.9 per cent of all cancer research for this same period.
Medical Research Future Fund
1.72The department outlined that since the MRFF’s inception in 2015, to 31 July 2023, the MRFF has invested $2.78 billion in 1145 health and medical research grants.
1.73This includes $454.70 million in 189 cancer-specific research grants, and $37.9million in 25 research grants that focus on rare cancers in particular.
Cancer Australia
1.74According to Cancer Australia, since 2007–08, Cancer Australia and its funding partners have provided over $53 million to support 147 grants focussed on rare or less common cancers and neuroendocrine cancers.
Previous and ongoing reviews and inquiries
1.75There are a number of previous, as well as current inquiries and reviews that have been undertaken, which closely relate to this inquiry. A brief overview of each of these pieces of work is provided below.
Ongoing: Treasury Consultation on the use of genetic testing results in life insurance underwriting
1.76In November 2023, the Hon Stephen Jones MP, Assistant Treasurer and Minister for Financial Services and Mr Josh Burns MP, announced the commencement of a consultation to consider options addressing the use of genetic testing by life insurers.
1.77According to a media release, it outlined that, ‘the consultation process and any comments received in relation to this paper will help inform the development of future policy in this area’.
1.78The consultation closed on 31 January 2024.
Ongoing: Health Technology Assessment Policy and Methods Review
1.79In October 2022, Australian Government commenced the Health Technology Assessment Policy and Methods Review (HTA Review).
1.80According to the department, health technology assessments inform Australian Government decisions to fund and subsidise health technologies through subsidy schemes and funding programs, including:
the Pharmaceutical Benefits Scheme;
the Medicare Benefits Schedule;
the National Immunisation Program; and
the Life Saving Drugs Program.
1.81A health technology assessment involves a range of processes that use scientific evidence to assess health technologies for their quality, safety, efficacy, effectiveness and cost-effectiveness.
1.82According to the department, the goals of the review are:
reducing time to access for Australians so that they can access new health technologies as early as possible
maintaining the attractiveness of Australia as a first-launch country to build on Australia’s status as a world leader in providing access to affordable healthcare
ensuring that our assessment processes keep pace with rapidly advancing health technology and minimise barriers to access.
1.83At the time of writing, the first public consultation for the HTAReview was completed, and consultation two was underway, to consider an options paper which details options for reform.
1.84At the time of writing, the review had been extended until 4 May 2024.
2021: House of Representatives Standing Committee on Health, Aged Care and Sport inquiry into approval processes for new drugs and novel medical technologies
1.85The House of Representatives Standing Committee on Health, Aged Care and Sport, conducted an inquiry into approval processes for new drugs and novel medical technologies in 2021.
1.86The committee tabled its report titled ‘The New Frontier – Delivering better health for all Australians’ on 25 November 2021.
1.87The committee found the HTA process is designed primarily for more common diseases, which creates challenges for reimbursement decisions for rare disease medicines and technologies. The final report made 31 recommendations, many of which focussed on the HTA system.
1.88The Australian Government tabled its response to this report in November 2023.
2016–17: Senate Select Committee into Funding for Research into Cancers with Low Survival Rates
1.89In November 2016, the Senate established the Select Committee into Funding for Research into Cancers with Low Survival Rates (the Select Committee), to inquire and report on the impact of health research funding models on the availability of funding for research into cancers with low survival rates.
1.90The Select Committee tabled its final report in on 28 November 2017.
1.91The committee was chaired by Senator Catryna Bilyk and it received 326 submissions. The committee made 25 recommendations, which focussed on improving outcomes for cancer patients with low survival rates by addressing issues pertaining to diagnosis, treatment and support.
2014–15: Senate Community Affairs References Committee inquiry into the Availability of new, innovative and specialist cancer drugs in Australia
1.92From 2014–15, during the 44th Parliament, the Community Affairs References Committee inquired into the availability of new, innovative and specialist cancer drugs in Australia.
1.93The committee was chaired by former Senator Rachel Siewert and the inquiry received 205 submissions. The committee made three recommendations, which called for a review of how medicines are registered and subsidised, how data on cancer medicines is collected, and recommended that the government establish a steering committee to examine the feasibility of a national cancer medicines register.