Equitable access to diagnosis and treatment for individuals with rare and less common cancers, including neuroendocrine cancer

REPORT - May 2024

List of recommendations

Recommendation 1

2.128The committee recommends that the Australian Government further develop clinical guidelines and local pathways for rare and less common cancers and ensure that they are accessible and available for general practitioners at the point-of-care.

Recommendation 2

2.131The committee recommends that the Department of Health and Aged Care investigate the feasibility of a two-week urgent referral system for suspected cancer, such as the model offered in the United Kingdom.

Recommendation 3

2.134The committee recommends that the Australian Government undertake a review of Medicare reimbursement settings for diagnostic tests and services, with a view of ensuring patients with, or with suspected rare or less common cancer, receive prompt, appropriate and affordable diagnostic testing.

Recommendation 4

2.141The committee recommends that the Australian Government enable increased reimbursements for MRI, PET and CT services throughout the diagnosis, surveillance and restaging of rare cancers.

Recommendation 5

2.142The committee recommends that the Australian Government, in partnership with state and territory governments, undertake a review of the distribution and availability of MRI, PET and CT services and infrastructure across jurisdictions, with a view of ensuring more equitable access to these services going forward.

Recommendation 6

2.149The committee recommends that, as a matter of priority, the Australian Government legislate a complete ban on genetic discrimination in life insurance.

Recommendation 7

2.153The committee recommends that the Australian Government investigate opportunities to increase equitable uptake and access to genomic screening and profiling for Australians.

Recommendation 8

2.157The committee recommends that the Australian Government closely monitor the outcomes of the DNA Screen study, and the implications of the study for the future development of population wide, preventive genomic screening programs.

Recommendation 9

3.126 The committee recommends that the Australian Government, through the Medical Research Future Fund, extend funding for the ZERO Childhood Cancer Program beyond June 2025.

Recommendation 10

3.134The committee recommends that the Australian Government utilise the Health Technology Assessment Policy and Methods Review to provide Australian rare and less common cancer patients with timely and affordable access to novel medicines.

Recommendation 11

3.135The committee recommends that the Australian Government ensure that the Managed Access Program is more widely accessed where appropriate.

Recommendation 12

3.136The committee recommends that the Australian Government adjust regulatory processes to broaden indication coverage for medicines that treat rare and less common cancers, including neuroendocrine cancer.

Recommendation 13

3.138The committee recommends that the Australian Government work with state and territory governments to ensure the families of paediatric cancer patients are not financially disadvantaged for hospital stays.

Recommendation 14

3.141The committee recommends that the Australian Government work with state and territory governments to identify the barriers faced by cancer patients requiring rehabilitation, prosthetics and implants as a result of their treatment, with a view to ensuring they have financial support for those services.

Recommendation 15

3.144The committee recommends that the Australian Government review the eligibility criteria of the Medical Treatment Overseas Program, with a particular focus on access to clinical trials and treatments for rare and less common cancer.

Recommendation 16

3.149The committee recommends that the Australian Government work with state and territory governments to implement the One Stop Shop and National Clinical Trials Front Door platform as a matter of priority.

Recommendation 17

3.154The committee recommends that the Australian Government ensure the Clinical Trials Activity initiative has an appropriate focus on funding clinical trials and research for people with cancer, including children, young people, and patients diagnosed with rare and less common cancers.

Recommendation 18

4.114The committee recommends that the Australian Government provide appropriate funding to key cancer advocacy organisations supporting patients with rare and less common cancers by providing informative resources and support services that:

increase health literacy;

empower patients to make informed decisions regarding their health; and

are culturally appropriate and accessible in a variety of languages.

Recommendation 19

4.116The committee recommends that the Australian Government provide sufficient funding and resources to ensure that the supportive care aspirations of the Australian Cancer Plan are delivered on for all Australians, including for those affected by rare and less common cancers.

Recommendation 20

4.121The committee recommends that the Department of Health and Aged Care monitor and report on progress for the delivery of the all-cancer nurse service.

Recommendation 21

4.122The committee recommends that the Australian Government explore the provision of at least one specialised neuroendocrine tumour nurse, and paediatric cancer nurse, in each Australian jurisdiction.

Recommendation 22

4.127The committee recommends that the Australian Government ensure that general practitioners are appropriately incentivised and remunerated for patient care coordination and longer-term management of complex and chronic diseases, including rare and less common cancers.

Recommendation 23

4.130The committee recommends that the Australian Government consider further investment to ensure the timely and affordable provision of psychological services to support patients and their families acutely impacted by rare and less common cancers.

Recommendation 24

4.134The committee recommends that the Australian Government work with state and territory governments, and palliative care services to support:

improved understanding amongst patients, families and clinicians of the potential benefits, and timely delivery of palliative care;

increased awareness that palliative care is not just an endof-life service;

increased availability of tailored and appropriate palliative care services, for a range of population groups; and

where appropriate, greater dialogue upon diagnosis, or throughout treatment, between patients, families and clinicians on palliative care options.

Recommendation 25

5.129The committee recommends that the Australian Government consider a review of the eligibility criteria and adequacy of the Carer Payment and Carer Allowance with a view of ensuring that people caring for cancer patients have access to appropriate support.

Recommendation 26

5.132The committee recommends that state and territory governments reform patient assisted travel schemes with a view to:

create more consistency in scheme offerings across all jurisdictions;

increase financial assistance; and

expand schemes to include travel and accommodation costs for clinical trial participants.

Recommendation 27

5.135The committee recommends that Australian health services continue to invest in, and extend the use of telehealth and teletrial technology and infrastructure, to ensure adequate and timely delivery of diagnostic, treatment and support services, particularly for people living outside metropolitan areas.

Recommendation 28

5.139The committee recommends that the Australian Government prioritise and monitor the implementation of the recommendations from the National Medical Workforce Strategy 2021–2031, and ensure it addresses the needs of rare and less common cancer patients, including neuroendocrine cancer patients.

Recommendation 29

5.141The committee recommends that the Australian Government, in partnership with state and territory governments and the higher education sector, review the emerging educational and workforce skill needs in relation to precision oncology, genomics, molecular curation and theranostics.

Recommendation 30

5.142The committee recommends that state and territory governments provide sustained funding and participation incentives for staffing positions and training opportunities for medical professionals and researchers interested in specialising in rare and less common cancers, including neuroendocrine cancers.

Recommendation 31

5.145The committee recommends that the Australian Government continue to engage with and support Aboriginal Community Controlled Health Organisations to ensure the ongoing and expanded delivery of culturally safe and appropriate and health and supportive care for First Nations people.

Recommendation 32

5.147The committee recommends that the Australian Government, in collaboration with Aboriginal Community Controlled Health Organisations, develop initiatives to increase participation rates of First Nations people in cancer screening, research and clinical trials.

Recommendation 33

5.148The committee recommends that the Australian Government partner with organisations representing culturally and linguistically diverse communities to develop initiatives to increase participation rates in cancer screening, research, and clinical trials.

Recommendation 34

6.67The committee recommends that the Australian Government ensure continued funding for rare and less common cancer projects to reduce existing research and clinical trial disparities.

Recommendation 35

6.71The committee recommends that the Australian Government fund biobanking initiatives to ensure the availability of quality cancer samples for research.

Recommendation 36

6.74The committee recommends that the Australian Government explore options to provide incentives to expand genomic research in Australia.

Recommendation 37

6.78The committee recommends that the Australian Government consider new mechanisms to encourage greater private sector investment in rare and less common cancer related research and clinical trial sponsorship in Australia.

Recommendation 38

6.83The committee recommends that the Australian Government review its evidentiary standards specifically for rare and less common cancer clinical trials to consider accepting real-world evidence and greater uncertainty in data where appropriate.

Recommendation 39

7.86The committee recommends that the Australian Government ensure the timely delivery of the national cancer data framework and minimum dataset, as per the timeframes set out in the Australian Cancer Plan.

Recommendation 40

7.95The committee recommends that the Australian Government, in consultation with the cancer control sector, address the following key data-related issues in its delivery of the national cancer data framework and minimum dataset, under the Australian Cancer Plan:

ensure that data is collected and reported in a way that includes information on both tumour location and body part, as well as molecular level information on cancer type and subtype;

ensure that information on the stage of cancer at diagnosis is consistently captured;

where appropriate, ensure that researchers and academics have access to such data in an accessible and timely way; and

ensure that patient privacy and consent is upheld throughout this work and in any future reforms.

Recommendation 41

7.98The committee recommends that any existing or future reforms to health and cancer data, must prioritise, and align with the National Agreement on Closing the Gap Priority Reform Four, to ensure:

commitment to the best practice collection, handling, and reporting of Aboriginal and Torres Strait Islander data; and

that such information and data is available to Aboriginal and Torres Strait Islander people in a timely and accessible way.

Contents