People affected by cancer
People affected by cancer
Cancer Council Australia strives to ensure all people affected by cancer have access to high quality, timely and culturally appropriate cancer information, treatment and supportive care. We advocate for and support efforts to improve cancer management, care and support for all, but particularly groups we know have unmet needs and poorer outcomes.
Our advocacy priorities and strategies in these areas are guided by our national Supportive Care Committee. The committee also recommends national policies and programs to help improve the availability and quality of information and support for people affected by cancer, and actions to improve consistency and efficiencies in supportive care policies and programs provided by Cancer Councils.
Policy development and advocacy
Our Supportive Care Committee supports policy development and provides evidence-based advice by contributing to Cancer Council responses to Federal Government and independent inquiries relating to clinical and/or supportive care issues that impact people affected by cancer.
Timely and affordable access to cancer drugs remains one of the most urgent issues for Australia as our population ages and the number of people with cancer continues to increase.
In February 2015 we made a joint submission with the Clinical Oncology Society of Australia (COSA) to the Senate inquiry into the availability of new, innovative and specialist cancer drugs in Australia. The report from the Senate Inquiry was released on 17 September 2015, and included multiple recommendations that reflected those in our joint submission.
The Senate Committee supported a complete review of the system for the registration and subsidisation of medicines to examine options for improved accessibility to affordable cancer drugs for people affected by cancer, including:
- pathways for the registration and listing of new medicines, or new indications for medicines already registered
- options for improving the assessment process, and
- options for expanding the post-market review of medicines.
Exploring the involvement of primary care to improve health outcomes for people with chronic and complex diseases continues to be a key topic of investigation by the Federal Government.
In August 2015 Cancer Council Australia, in collaboration with the Clinical Oncology Society of Australia and Primary Care Cancer Clinical Trials Collaborative, submitted a response to the Standing Committee on Health’s Inquiry into Chronic Disease Prevention and Management in Primary Health Care and representatives from the three organisations appeared at the August public hearing in Canberra.
Our submission was quoted multiple times in the published report and recommendations aligned with our recommendations included examining the potential to expand the Practice Incentives Program to include programs for cancer screening, continuing Federal Government support for the evolution and expansion of ‘My Health Record’, initiatives to support prevention and management of chronic disease in general practice settings, and continued support and funding for the establishment of Primary Health Networks or similar into the future, to enable consistent development and support for chronic disease prevention and management.
Also in 2015-16, the Government-appointed Primary Health Care Advisory Group examined opportunities for reform in the primary health care sector to improve the management of people with complex health conditions. Cancer Council Australia, the Clinical Oncology Society of Australia and the Primary Care Collaborative Cancer Clinical Trials Group provided a joint response to the Advisory Group’s public consultation.
Key recommendations from this consultation focused on the use of mechanisms to improve the coordination of care between healthcare providers, and creating smooth transitions between services to improve quality of care provided to the patient throughout their cancer journey. Such mechanisms included patient enrolment in Health Care Homes, establishment of effective mechanisms to support flexible multidisciplinary team based care. Our joint submission and the Advisory Group’s report both recognised and prioritised the importance of the Medicare Benefits Scheme to enable universal access to essential health care to all Australians.
Pathways to optimal cancer care
Throughout 2015-16 Cancer Council supported the development and dissemination of guidance for health professionals to ensure all people diagnosed with cancer in Australia receive optimal treatment and supportive care.
In a collaboration between Cancer Council, the Federal Government through Cancer Australia and the Victorian Department of Health and Human Services, Optimal Cancer Care Pathways have been developed for 15 cancer types. The clinical pathways provide high-level overviews of the best cancer care a patient should receive based on available evidence. For each pathway there are also quick reference versions for GPs, and versions for patients and their caregivers outlining “what to expect” at each stage of the journey. The patient versions can be viewed and printed via an interactive portal: http://www.cancerpathways.org.au/optimal-care-pathways.
Financial burden of cancer study
Research has showed the costs of cancer are significant and can make it hard for people with cancer to focus on their recovery. Distress due to the financial impact of cancer is a common reason people contact Cancer Council support services.
In 2015-16, Cancer Council progressed our work to assess the financial burden of cancer on individuals diagnosed with cancer and their families and carers.
Our ‘Cost of cancer’ project will highlight factors that contribute to the financial distress experienced by people with cancer from a healthcare professional’s experience and perspective. To inform this, a survey was developed to capture information from the perspective of oncology health professionals in dedicated cancer care coordination and social work positions. This survey will be distributed in late 2016.
The outcomes from the survey will provide an initial understanding to inform Cancer Council’s research, advocacy, programs and information aimed at reducing the financial distress associated with a cancer diagnosis in Australia.
National Cancer Care Policy
The National Cancer Care Policy is an online resource developed by Cancer Council Australia to provide evidence-based information about the public policy aspects of clinical cancer care, including care planning, referral pathways, access and equity.
In 2015-16, we updated the 'Medical Cannabis' chapter of the Policy to reflect policy and legislative changes at a federal level and in some states; developed new content relating to radiotherapy services and impact on out-of-pocket patient costs if proposed changes to the Medicare Safety Net in 2016 are implemented; and began development of content related to the promotion of coordinated cancer care as a system-wide initiative to improve patient care and experience.
The policy is updated regularly to reflect policy and other developments in relation to our key advocacy priorities, including access and affordability of cancer treatment.
Medical use of cannabis
The potential benefits of cannabis and cannabinoids in managing illness induced by chemotherapy, especially in patients with advanced cancer who have responded poorly to conventional options, have been widely debated and the subject of several government reviews in recent years.
In response, Cancer Council and the Clinical Oncology Society of Australia (COSA) developed a joint position summarising the current evidence about the use of cannabis in relation to cancer. The position statement was published on our wiki platform in late 2015 and updated in 2016 to reflect developments in policy and regulation in Australian jurisdictions.
We reviewed the evidence related to the use of cannabis and cannabinoids in the treatment of cancer and symptom relief from cancer-related side effects such as chemotherapy-induced nausea, pain and weight loss as well as potential short and long-term side effects from cannabis use. The statement also summarises current public policy and legislation relating to access to and personal use of cannabis.
The position statement confirmed there was no current evidence that cannabis or cannabinoids can prevent cancer, inhibit tumour growth, or treat cancer. There is some evidence that cannabis and cannabinoids in controlled delivery may help cancer patients:
- by relieving nausea and vomiting in patients undergoing chemotherapy;
- as an additional pain relief in patients with moderate to severe pain; and/or
- as an appetite stimulant for patients experiencing weight loss and muscle wasting.
Smoking the cannabis plant or marijuana is not recommended because of the unpredictable levels of cannabinoid and inhalation of carcionogenic substances. Synthetic cannabis and natural cannabinoid extract products delivered via an oral spray is the preferred administration method. However both natural and synthetic forms of cannabis are currently illegal in Australia for therapeutic use to alleviate side effects of cancer and chemotherapy. Cancer Council and COSA welcome further research into the potential benefits for cancer patients.
Gene patents invalidated
Cancer Council Australia has long advocated against commercial monopolisation of genetic material, campaigning for legal clarity around gene patents since 2003.
On 7 October 2015, the High Court of Australia ruled unanimously to invalidate the patent for the BRCA1 genetic mutation.
The High Court’s unanimous decision that isolating the BRCA1 gene mutation was not a 'patentable invention' should help to ensure that Australian healthcare consumers are protected from commercial gene monopolies.
Cancer Council continues to monitor the policy environment to identify whether the Patent Act still needs to change or the unanimous High Court decision provides sufficient legal precedent and clarity.
Growing need for supportive care
In February, Cancer Council released a new estimate that showed the number of Australians living with cancer or having survived a diagnosis had exceeded 1 million.
While the increasing number of survivors is testament to progress in cancer detection and treatment, we also highlighted the need for changes in how we manage cancer and care for people who have had cancer. Many cancer survivors live with specific and ongoing physical and emotional needs.
On World Cancer Day (4 February) in 2016, we encouraged Australians affected by cancer to find out about and use Cancer Councils’ support services for patients, carers and survivors.
Support for CALD people with cancer
Australia has one of the most culturally diverse populations in the world, with more than one in four Australians born overseas. Research has shown that culturally and linguistically diverse (CALD) migrants with cancer report higher levels of unmet needs and poorer quality of life.
In response, Cancer Council and the Australian Cancer Survivorship Centre at Peter MacCallum Cancer Centre joined forces in 2015-16 to develop culturally-appropriate information on cancer survivorship for Australians of CALD backgrounds.
A new booklet, On the road to recovery, has been produced in Cantonese, Mandarin and Greek, and incorporates information from Cancer Council’s Understanding cancer series of booklets about living well after cancer, emotions, coping with fatigue, work after cancer, patient rights, and understanding complementary therapies. Production of On the road to recovery for Italian, Vietnamese and Arabic-speaking communities is underway.
The project is funded by a Cancer Australia grant under the “Supporting people with cancer” initiative.
The Supportive Care Committee also was awarded funding under Cancer Australia’s “Supporting people with cancer” initiative to support the development of in-language, culturally-appropriate, web-based, basic cancer information resources. This three-year project aims to address low health literacy experienced by migrant groups in Australia, and will focus on developing written and audio resources for the Arabic-speaking, Chinese (Cantonese and Mandarin) and Vietnamese communities living in Australia. The resources will be developed in consultation with the targeted communities and will address culturally significant issues and identified variations in understanding of cancer.
Cancer support promoted at cinemas
In September and October 2015, we promoted Cancer Council services for people affected by cancer through a unique partnership with director Paul Cox on his feature film Force of Destiny.
The film is based on Paul’s experience of being diagnosed with liver cancer, and undergoing a life-saving liver transplant. The love story, starring David Wenham, Shahana Goswami and Jacqueline McKenzie, premiered at the 64th Melbourne International Film Festival in July 2015.
Cancer Council supported a series of screenings of Force of Destiny across Australia, developing a souvenir cinema program that provided a behind-the-scenes look at the film and highlighted our cancer information and support services available to anyone affected by cancer.
Paul Cox said he was extremely grateful for the support of Cancer Council during his illness, and hoped the film would create greater awareness of the need to care for and support people with cancer and to remain hopeful.
Quality cancer information
Cancer Council produces information and resources to ensure all people affected by cancer – those diagnosed with cancer as well as carers, friends and families – have access to high quality, evidence-based cancer information.
We develop and manage a suite of printed and electronic resources, including easy-to-read information about specific types of cancer, treatments, and emotional and practical issues.
In 2015-16 we added to our collection of resources available in ebook format, publishing new booklets about Understanding Prostate Cancer, Talking to Kids About Cancer, Understanding Skin Cancer and Sexuality, Intimacy and Cancer.
We revised previously-published booklets and e-books, producing updated versions of 21 booklets in 2015-16:
- Understanding Cervical Cancer
- Overcoming Cancer Pain
- Cancer and Your Finances (previously When cancer changes your financial plans)
- Understanding Stomach and Oesophageal Cancers
- Understanding Prostate Cancer
- Talking to Kids About Cancer
- Understanding Pancreatic Cancer
- Understanding Thyroid Cancer
- Understanding Radiotherapy
- Understanding Brain Tumours
- Emotions and Cancer
- Understanding Skin Cancer
- Exercise for People Living with Cancer
- Understanding Ovarian Cancer
- Understanding Surgery
- Understanding Bladder Cancer
- Cancer Care and Your Rights
- Nutrition and Cancer
- Sexuality, Intimacy and Cancer
- Fertility and Cancer
- Understanding Cancer of Unknown Primary
Our National Publications Working Group also began reviewing fact sheets that are commonly used by state and territory Cancer Councils to develop a suite of national fact sheets about various cancer types and concerns. In 2016 we published one new fact sheet about Understanding taste and smell changes.
Cancer Council 13 11 20
Cancer Councils provide information and support to all people affected by cancer, their families and friends.
Cancer Council 13 11 20 is a free*, confidential telephone information and support service available to all states and territories. Specially trained staff provide information, emotional and practical support, and referral to programs and services provided by Cancer Councils and other organisations. Some states have multilingual services.
In 2015, around 58,000 people called Cancer Council 13 11 20. Callers included people being treated for cancer, people living after cancer, families, carers and friends of people with cancer, healthcare professionals, teachers and students.
Our Supportive Care Committee facilitates communication and knowledge sharing between state and territory Cancer Council staff to identify opportunities to enhance our services and resources, including the 13 11 20 service.
*Local call cost anywhere in Australia, except from mobiles.
For further information
This page was last updated on: Friday, October 21, 2016