” In Australia, the poorest among us are 30% more likely to die of cancer than the richest.
There is also a big gap in cancer outcomes for our Indigenous Australian population, where incident rates from cancer are 10% higher than non-Indigenous Australians and mortality rates are 30% higher.
Similarly, cancer incidence (particularly cancers with poorer prognoses) and mortality are significantly higher outside capital cities, with outcomes worsening in step with remoteness.
So why are money, cultural background, geographic location and cancer types leading to some Australians being left behind?
More research is required to definitively pinpoint why these trends are occurring, but several factors stand out. More needs to be done to promote healthy lifestyles and cancer prevention to some parts of our community.
As an example, we know that smoking rates are higher in Indigenous populations and among poorer Australians and also link to cancers with poorer prognosis such as lung cancer.
Continued investment in anti-smoking campaigns tailored to these communities is critical in reducing this disparity. Currently around 40% of Indigenous Australians smoke compared with 12.2% of the general Australian population. In remote communities, this rises to around 60%.
Other unhealthy lifestyles that can increase cancer risk, including excessive alcohol consumption, physical inactivity, an unhealthy diet and obesity, are also more prevalent among socio-economically disadvantaged populations
Professor Sanchia Aranda is the CEO of Cancer Council Australia
According to the Cancer Council Australia 1 in 3 cancers could be preventable through lifestyle choices.
We know that preventing cancer is one of the most effective ways of creating a cancer free future.
At least one in three cancer cases could be prevented and the number of cancer deaths could be reduced significantly by choosing a cancer smart lifestyle.
Each year, more than 13,000 cancer deaths are due to smoking, sun exposure, poor diet, alcohol, inadequate exercise or being overweight.
Fortunately, there are a number of simple lifestyle changes you can make to help reduce your risk of cancer such as:
Maintaining a healthy weight
Eat a healthy diet
Regular exercise
Quitting smoking
Reducing alcohol intake
Being SunSmart
Get checked
Read more about the seven steps to reducing your cancer risk in Cancer Council’s cancer prevention lifestyle fact sheets.
” The review shows that cultural safety in service provision, increased participation in breast, bowel and cervical screening and reduction in risk factors will improve outcomes for cancer among Aboriginal and Torres Strait Islander people.
The good news is that many cancers are considered to be preventable. Lung cancer is the most commonly diagnosed cancer among Aboriginal and Torres Strait Islander people, followed by breast cancer, bowel cancer and prostate cancer.
Tobacco smoking is still seen as the greatest risk factor for cancer’.
HealthInfoNet
“Aboriginal and Torres Strait Islander Community Controlled Health Services
Aboriginal and Torres Strait Islander Community Controlled Health Services are located in all jurisdictions and are funded by the federal,state and territory governments and other sources [91].
They are planned and governed by local Aboriginal and Torres Strait and Torres Strait Islander communities and aim to deliver holistic and culturally appropriate health and health-related services.
Services vary in the primary health care activities they offer. Possible activities include: diagnosis and treatment of illness or disease; management of chronic illness; transportation to medical appointments; outreach clinic services; immunisations; dental services; and dialysis services.
Aboriginal and Torres Strait Islander cancer support groups have been identified as important for improving cancer awareness and increasing participation in cancer screening services [92].
Aboriginal women attending these support groups have reported an increased understanding of screening and reported less fear and concern over cultural appropriateness, with increases in screening rates [19].
Support groups have also been found to help in follow up and ongoing care for cancer survivors [19, 93], particularly where they are shaped to meet the needs of Aboriginal and Torres Strait Islander people [73, 94].”
The Australian Indigenous HealthInfoNet (HealthInfoNet) at Edith Cowan University published a in 2018 Review of cancer among Aboriginal and Torres Strait Islander people.
The review, written by University of Western Australia staff (Margaret Haigh, Sandra Thompson and Emma Taylor), in conjunction with HealthInfoNet staff (Jane Burns, Christine Potter, Michelle Elwell, Mikayla Hollows, Juliette Mundy), provides general information on factors that contribute to cancer among Aboriginal and Torres Strait Islander people.
It provides detailed information on the extent of cancer including incidence, prevalence and survival, mortality, burden of disease and health service utilisation.
This review discusses the issues of prevention and management of cancer, and provides information on relevant programs, services, policies and strategies that address cancer among Aboriginal and Torres Strait Islander people.
The review provides:
general information on factors (historical/protective/risk) that contribute to cancer among Aboriginal and Torres Strait Islander people
detailed information on the extent of cancer among Aboriginal and Torres Strait Islander people, including: incidence, prevalence and survival data; mortality and burden of disease and health service utilisation
a discussion of the issues of prevention and management of cancer
information on relevant programs, services, policies and strategies that address cancer among Aboriginal and Torres Strait Islander people
a conclusion on the possible future directions for combating cancer in Australia
Selected Extract
2018
Lung Cancer Framework: Principles for Best Practice Lung Cancer Care in Australia is released
2016
National Framework for Gynaecological Cancer Control is released
2015
First National Aboriginal and Torres Strait Islander Cancer Framework is released
2015
Implementation Plan for the National Aboriginal and Torres Strait Islander Health Plan is released
2014
Second Cancer Australia Strategic Plan 2014–2019 is published
2013
First National Aboriginal and Torres Strait Islander Health Plan 2013–2023 is published
2011
First Cancer Australia Strategic Plan 2011–2014 is published
2008
National Cancer Data Strategy for Australia is released
2003
Report Optimising Cancer Care in Australia is published
1998
First National health priority areas cancer control report is published
1996
Cancer becomes one of four National health priority areas (NHPA)
1988
Health for all Australians report is released
1987
First National Cancer Prevention Policy for Australia is published
Concluding comments
Despite considerable improvements in cancer detection and treatment over recent decades, Aboriginal and Torres Strait Islander people diagnosed with cancer generally experience poorer outcomes than non-Indigenous people for an equivalent stage of disease [27, 97]. This is highlighted by statistics which showed that, despite lower rates of prevalence and hospitalisation for all cancers combined for Aboriginal and Torres Strait Islander people compared with non-Indigenous people, between 1998 and 2015, the age-standardised mortality rate ranged from 195 to 246 per 100,000 while the rate for non-Indigenous people decreased from 194 to 164 per 100,000 [2].
Furthermore for 2007–2014, while 65% of non-Indigenous people had a chance of surviving five years after receiving a cancer diagnosis, only 50% of Aboriginal and Torres Strait Islander people did [2].
The disparities are particularly pronounced for some specific cancers – for lung cancer the age-standardised incidence rate for Aboriginal and Torres Strait Islander people was twice that for non-Indigenous people, while for cervical cancer the rate was 2.5 times the rate for non-Indigenous people for 2009–2013 [2].
The factors contributing to these poorer outcomes among Aboriginal and Torres Strait Islander people are complex. They reflect a broad range of historical, social and cultural determinants and the contribution of lifestyle and other health risk factors [6], combined with lower participation in screening programs, later diagnosis, lower uptake and completion of cancer treatment, and the presence of other chronic diseases [27, 98, 155]. Addressing the various factors that contribute to the development of cancer among Aboriginal and Torres Strait Islander people is important, but improvements in some of these areas, particularly in reducing lifestyle and behavioural risk factors, are likely to take some time to be reflected in better outcomes.
Current deficiencies in the prevention and management of cancer suggest there is considerable scope for better services that should lead to improvements in the short to medium term. Effective cancer prevention and management programs that are tailored to community needs and are culturally appropriate are vital for the current and future health of Aboriginal and Torres Strait Islander people [56, 57]. Providing effective cancer prevention and management also requires improved access to both high quality primary health care services and tertiary specialist services. Effective and innovative programs for the prevention and management of cancer among Aboriginal and Torres Strait Islander people do exist on an individual basis and, in some cases, the efforts made to engage Aboriginal and Torres Strait Islander people in screening programs, in particular, are impressive. However, a more coordinated, cohesive national approach is also required.
Reducing the impact of cancer among Aboriginal and Torres Strait Islander people is a crucial aspect in ‘closing the gap’ in health outcomes. The National Aboriginal and Torres Strait Islander cancer framework [56] may be an important first step in addressing the current disparity in cancer outcomes and raises the probability of real progress being made. Cancer Australia has recently released the Optimal Care pathway for Aboriginal and Torres Strait Islander people which recommends new approaches to cancer care and with the aim of reducing disparities and improving outcomes and experiences for Aboriginal and Torres Strait Islander people with cancer [156]. As encouraging as these developments are, substantial improvements will also depend upon the effective implementation of comprehensive strategies and policies that address the complexity of the factors underlying the disadvantages experienced by Aboriginal and Torres Strait Islander people.
Action beyond the health service sector that addresses the broader historical, social and cultural determinants of health are also required if real progress is to be made [6]
“Cancer has been largely overlooked amongst Indigenous populations world-wide and remains the second leading cause of death among Aboriginal and Torres Strait Islander people “
Professor Gail Garvey, who convened the first WICC and is co-chair of WICC 2019 :Pictured above with Professor Tom Calma and Blackfoot Fancy Feather Dancer Kyle Agapi.
“Smoking is the single biggest contributor to early deaths, including cancer deaths, of Aboriginal and Torres Strait Islander people – which is why it is so important that we encourage people not to take up smoking and assist smokers to stop “
Professor Tom Calma AO, National Coordinator, Tackling Indigenous Smoking, and member of the Cancer Australia Aboriginal and Torres Strait Islander Cancer Leadership Group
Indigenous communities, consumers and health experts from around the world have come together at the opening of the second World Indigenous Cancer Conference (WICC) at the Calgary Telus Convention Centre in Canada.
The conference, which has drawn a large contingent of Australian delegates, follows on from the success of the inaugural WICC held in Brisbane, Australia in 2016.
The WICC 2019 theme is ‘Respect, Reconciliation and Reciprocity,’ with over 400 delegates from across the globe discussing cancer and its impact on Indigenous peoples.
World-wide, Indigenous peoples bear a disproportionately higher cancer burden than non-Indigenous peoples, which makes WICC 2019 so very important.
The amazing Melissa Jim talking now at #WICC2019 about the Indian Health Services and cancer data and surveillance for American Indian and Alaska Native people. Linkage (NPCR & SEER) used to improve the accuracy/completion of identification information. pic.twitter.com/w1S4RtYMjt
Hosted by the Canadian Indigenous Research Network Against Cancer (CIRNAC) in partnership with the host sponsor Alberta Health Services, this premier event is supported by the Alberta First Nations Information Governance Centre, Canadian Institutes of Health Research, Canadian Partnership Against Cancer, and the International Agency for Research on Cancer (IARC) which is the specialized cancer agency of the World Health Organization.
Professor Gail Garvey , Blackfoot Piikani Chief Stan Grier and Professor Tom Calma
WICC 2019 has drawn expertise of leading cancer researchers, public health practitioners, clinicians, advocacy groups, Indigenous community leaders and consumers.
They are coming together to share knowledge about critical issues across the cancer continuum from prevention and treatment to survivorship and end of life.
Several Aboriginal and Torres Strait Islander delegates with a lived experience of cancer are making an important contribution to the conference.
Des McGrady, an Aboriginal cancer survivor, said “An international meeting is important for the information sharing that we can pass on to community and people working in this space. This will allow us to work in partnership to drive positive change.”
The burden of cancer among Indigenous populations is of major public health importance and forums for collaboration such as this conference will strengthen research and service delivery and help accelerate progress in improving cancer outcomes.
Indigenous leadership, culturally sound service delivery and encouragement of mainstream services to prioritise Indigenous cancer are critical to these efforts and central to WICC 2019.
For more details about the conference, please visit the website:http://wicc2019.com
‘The review shows that cultural safety in service provision, increased participation in breast, bowel and cervical screening and reduction in risk factors will improve outcomes for cancer among Aboriginal and Torres Strait Islander people.
The good news is that many cancers are considered to be preventable. Lung cancer is the most commonly diagnosed cancer among Aboriginal and Torres Strait Islander people, followed by breast cancer, bowel cancer and prostate cancer.
Tobacco smoking is still seen as the greatest risk factor for cancer’.
“Aboriginal and Torres Strait Islander Community Controlled Health Services
Aboriginal and Torres Strait Islander Community Controlled Health Services are located in all jurisdictions and are funded by the federal,state and territory governments and other sources [91].
They are planned and governed by local Aboriginal and Torres Strait and Torres Strait Islander communities and aim to deliver holistic and culturally appropriate health and health-related services.
Services vary in the primary health care activities they offer. Possible activities include: diagnosis and treatment of illness or disease; management of chronic illness; transportation to medical appointments; outreach clinic services; immunisations; dental services; and dialysis services.
Aboriginal and Torres Strait Islander cancer support groups have been identified as important for improving cancer awareness and increasing participation in cancer screening services [92].
Aboriginal women attending these support groups have reported an increased understanding of screening and reported less fear and concern over cultural appropriateness, with increases in screening rates [19].
Support groups have also been found to help in follow up and ongoing care for cancer survivors [19, 93], particularly where they are shaped to meet the needs of Aboriginal and Torres Strait Islander people [73, 94].”
The Australian Indigenous HealthInfoNet (HealthInfoNet) at Edith Cowan University has published a new Review of cancer among Aboriginal and Torres Strait Islander people.
The review, written by University of Western Australia staff (Margaret Haigh, Sandra Thompson and Emma Taylor), in conjunction with HealthInfoNet staff (Jane Burns, Christine Potter, Michelle Elwell, Mikayla Hollows, Juliette Mundy), provides general information on factors that contribute to cancer among Aboriginal and Torres Strait Islander people.
It provides detailed information on the extent of cancer including incidence, prevalence and survival, mortality, burden of disease and health service utilisation.
This review discusses the issues of prevention and management of cancer, and provides information on relevant programs, services, policies and strategies that address cancer among Aboriginal and Torres Strait Islander people.
The review provides:
general information on factors (historical/protective/risk) that contribute to cancer among Aboriginal and Torres Strait Islander people
detailed information on the extent of cancer among Aboriginal and Torres Strait Islander people, including: incidence, prevalence and survival data; mortality and burden of disease and health service utilisation
a discussion of the issues of prevention and management of cancer
information on relevant programs, services, policies and strategies that address cancer among Aboriginal and Torres Strait Islander people
a conclusion on the possible future directions for combating cancer in Australia
Selected Extracts
Policies and strategies
There are very few national policies and strategies that focus specifically on cancer in the Aboriginal and Torres Strait Islander population. The National Aboriginal and Torres Strait Islander Cancer Framework is therefore significant as the first national approach to addressing the gap in cancer outcomes that currently exists between Aboriginal and Torres Strait Islander people and the non-Indigenous population [132]. However, over the past 30 years, there have been a number of relevant strategies and frameworks developed addressing cancer in the general population, and broader aspects of Aboriginal and Torres Strait Islander health. A selection of national policy developments relevant to addressing cancer among Aboriginal and Torres Strait Islander people are described briefly below.
Selected national policy developments relevant to addressing cancer among Aboriginal and Torres Strait Islander people
2018
Lung Cancer Framework: Principles for Best Practice Lung Cancer Care in Australia is released
2016
National Framework for Gynaecological Cancer Control is released
2015
First National Aboriginal and Torres Strait Islander Cancer Framework is released
2015
Implementation Plan for the National Aboriginal and Torres Strait Islander Health Plan is released
2014
Second Cancer Australia Strategic Plan 2014–2019 is published
2013
First National Aboriginal and Torres Strait Islander Health Plan 2013–2023 is published
2011
First Cancer Australia Strategic Plan 2011–2014 is published
2008
National Cancer Data Strategy for Australia is released
2003
Report Optimising Cancer Care in Australia is published
1998
First National health priority areas cancer control report is published
1996
Cancer becomes one of four National health priority areas (NHPA)
1988
Health for all Australians report is released
1987
First National Cancer Prevention Policy for Australia is published
It was not until the late 1980s that national cancer control strategies and policies began to be developed [133]. In 1987, the first National Cancer Prevention Policy for Australia, was published by the Australian Cancer Society (ACS) (now the Cancer Council Australia) based on a series of expert workshops [134].
It outlined what prevention activities were currently being undertaken, what should be undertaken and suggested a number of goals, targets and strategies in the areas of cancer prevention and early detection and screening. This policy has been updated many times over the years [133] and is still in publication as the National cancer control policy [135].
The following year, in 1988, the Health for all Australians report, commissioned by the Australian Health Ministers’ Advisory council (AHMAC), recognised that cancers could be influenced by primary or secondary prevention strategies [136]. The report recommended nine goals and 15 targets related to cancers, based on those put forward by the National Cancer Prevention Policy for Australia. Cancer prevention and strategies relating to breast, cervical and skin cancer and tobacco smoking were recommended as initial priorities under the National Program for Better Health. These were then endorsed at the Australian Health Ministers Conference and funding was provided.
In 1996, cancer control was identified as one of four National health priority areas (NHPA). This led, the following year, to the publication of the First report on national health priority areas 1996, which outlined 26 indicators spanning the continuum of cancer care, and included outcome indicators, indicators relating to patient satisfaction and the creation of hospital based cancer registries [137].
In 1998, the first NHPA cancer control report was produced [138]. It identified a number of opportunities for improvements in cancer control, including within ‘special populations such as Indigenous people’ [138].
In 2003, the report Optimising cancer care in Australia was jointly developed by The Cancer Council Australia, the Clinical Oncological Society of Australia (COSA) and the National Cancer Control Initiative (NCCI), with strong consumer input [139]. This report made 12 key recommendations, including that the needs of Aboriginal and Torres Strait Islander people be the focus of efforts to bridge gaps in access to and utilisation of culturally sensitive cancer services.
In 2008, the National Cancer Data Strategy for Australia aimed to provide direction for collaborative efforts to increase data availability, consistency and quality [140]. It reported that although Indigenous status is recorded by cancer registries, data quality is poor, and recommended that the quality of Indigenous markers in hospital and death statistics collections needs to improve if cancer registries are to have better data.
In 2011, Cancer Australia published the first Cancer Australia strategic plan 2011–2014, which aimed to identify future trends in national cancer control and to outline strategies for the organisation to improve outcomes for all Australians diagnosed with cancer [141]. It was followed in 2014, by the Cancer Australia Strategic Plan 2014–2019, which had an increased focus on improving quality of cancer care and outcomes for Aboriginal and Torres Strait Islander people [142].
In 2013, the National Aboriginal and Torres Strait Islander Health Plan 2013–2023 (the Health plan) was developed to provide a long-term, evidence-based policy framework approach to closing the gap in disadvantage experienced by Aboriginal and Torres Strait Islander people [143].
The Health plan emphasises the importance of culture in the health of Aboriginal and Torres Strait Islander people and the rights of individuals to a safe, healthy and empowered life. Its vision is for the Australian health system to be free of racism and inequity and all Aboriginal and Torres Strait Islander people to have access to health services that are effective, high quality, appropriate and affordable. This led to the publication of the Implementation plan for the National Aboriginal and Torres Strait Islander Health Plan 2013–2023 in 2015 [90], which outlines the strategies, actions and deliverables required for the Australian Government and other key stakeholders to implement the Health plan.
The first National Aboriginal and Torres Strait Islander Cancer Framework (the Framework) was released in 2015, to address disparities and improve cancer outcomes for Aboriginal and Torres Strait Islander people [56]. It provides strategic direction by setting out seven priority areas for action and suggests enablers that may help in planning or reviewing strategies to address each of the priority areas. The Framework aims to improve cancer outcomes for Aboriginal and Torres Strait Islander people by ensuring timely access to good quality and appropriate cancer related services across the cancer continuum.
In 2016, Cancer Australia released the National Framework for Gynaecological Cancer Control to guide future directions in national gynaecological cancer control to improve outcomes for women affected, as well as their families and carers [144]. It aims to ensure the provision of best practice and culturally appropriate care to women across Australia by offering strategies across six priority areas, of which one pertains specifically to improving outcomes for Aboriginal and Torres Strait Islander women.
In 2018, Cancer Australia released the Lung Cancer Framework: Principles for Best Practice Lung Cancer Care in Australia [145]. It aims to improve the outcomes and experiences of people affected by lung cancer by supporting the uptake of five principles: patient-centred care; multidisciplinary care; timely access to evidence-based care; coordination, communication and continuity of care and data-driven improvements.
Future directions
The National Aboriginal and Torres Strait Islander Cancer Framework (the Framework) provides guidance for individuals, communities, organisations and governments [56]. The Framework was developed in partnership with Menzies School of Health Research, and was informed by a systematic review of the evidence and extensive national consultations. The parties involved in these consultations included Aboriginal and Torres Strait Islander people affected by cancer, health professionals working with Aboriginal and Torres Strait Islander people and experts in Indigenous cancer control. The Framework outlined seven evidence-based priority areas for action as follows:
improving knowledge and attitudes about cancer
focusing prevention activities
increasing participation in screening and immunisation
ensuring early diagnosis
delivering optimal and culturally appropriate treatment and care
involving, informing and supporting families and carers
strengthening the capacity of cancer-related services to meet the needs of Aboriginal and Torres Strait Islander people.
Each of these priorities was accompanied by a number of enablers to assist in planning or reviewing strategies to address that priority. The enablers provide flexible approaches to meeting the priorities that allow for local context and needs.
The development of the Framework has been responsible for gathering national support and agreement on the priorities and for creating a high level of expectation around the ability to address the growing cancer disparity [146]. Cancer Australia has since commenced a number of projects and initiatives that focus on one or more of the priorities identified by the Framework. One project aims to identify critical success factors and effective approaches to increasing mammographic screening participation for Aboriginal and Torres Strait Islander women [147]. A leadership group on Aboriginal and Torres Strait Islander cancer control tasked with driving a shared agenda to improve cancer outcomes has also been established [148]. In addition, the development of a monitoring and reporting plan for the Framework is underway.
Quality data are critical to understanding the variations in cancer care and outcomes of Aboriginal and Torres Strait Islander people, and to inform policy, service provision and clinical practice initiatives to improve those outcomes. However, it has been repeatedly reported in the literature and by the Framework, that current data are inadequate or incomplete, and there is a significant need for improved local, jurisdictional and national data on Aboriginal and Torres Strait Islander people with cancer [56, 149-151]. In particular, the need for primary healthcare services to address the under identification of Aboriginal and Torres Strait Islander status in data registries. A project currently underway in SA, which is likely to have relevance to other regions, aims to develop an integrated comprehensive, cancer monitoring and surveillance system for Aboriginal people, while also incorporating their experiences with cancer services [149].
Both the Framework and the literature have identified a need for a more supportive and culturally appropriate approach across the cancer care continuum for Aboriginal and Torres Strait Islander people [56, 77, 151, 152]. The Wellbeing Framework for Aboriginal and Torres Strait Islander Peoples Living with Chronic Disease, (Wellbeing framework), aims to assist healthcare services to improve the quality of life and quality of care, as well as health outcomes, for Aboriginal and Torres Strait Islander people living with chronic disease [153]. This addresses the identified need for more supportive and culturally appropriate care as it attempts to incorporate the social, emotional, cultural and spiritual aspects of health and wellbeing, as well as the physical aspects.
The Wellbeing framework is underpinned by two core values, which are considered fundamental to the care of Aboriginal and Torres Strait Islander people [153, 154]. These core values highlight that wellbeing is supported by:
upholding people’s identities in connection to culture, spirituality, families, communities and country and
having culturally safe primary healthcare services in place.
The Wellbeing framework consists of four essential elements for supporting the wellbeing of Aboriginal and Torres Strait Islander people living with chronic disease [153, 154]. These show the importance of having:
locally defined, culturally safe primary health care services
appropriately skilled and culturally competent health care teams
holistic care throughout the lifespan
best practice care that addresses the particular needs of a community.
The Wellbeing framework suggests a number of practical and measurable applications for applying or achieving the underlying principles of each element. It has the capacity to be adapted by primary healthcare services, in consultation with the communities they serve, to more effectively meet the chronic and cancer care needs of their communities [153, 154].
The Leadership Group on Aboriginal and Torres Strait Islander Cancer Control was established in 2016-17 to:
provide strategic advice and specialist expertise in Indigenous cancer control
encourage cross-sector collaboration in addressing the priorities in the National Aboriginal and Torres Strait Islander Cancer Framework
share knowledge across the sector to leverage opportunities.
Concluding comments
Despite considerable improvements in cancer detection and treatment over recent decades, Aboriginal and Torres Strait Islander people diagnosed with cancer generally experience poorer outcomes than non-Indigenous people for an equivalent stage of disease [27, 97]. This is highlighted by statistics which showed that, despite lower rates of prevalence and hospitalisation for all cancers combined for Aboriginal and Torres Strait Islander people compared with non-Indigenous people, between 1998 and 2015, the age-standardised mortality rate ranged from 195 to 246 per 100,000 while the rate for non-Indigenous people decreased from 194 to 164 per 100,000 [2].
Furthermore for 2007–2014, while 65% of non-Indigenous people had a chance of surviving five years after receiving a cancer diagnosis, only 50% of Aboriginal and Torres Strait Islander people did [2].
The disparities are particularly pronounced for some specific cancers – for lung cancer the age-standardised incidence rate for Aboriginal and Torres Strait Islander people was twice that for non-Indigenous people, while for cervical cancer the rate was 2.5 times the rate for non-Indigenous people for 2009–2013 [2].
The factors contributing to these poorer outcomes among Aboriginal and Torres Strait Islander people are complex. They reflect a broad range of historical, social and cultural determinants and the contribution of lifestyle and other health risk factors [6], combined with lower participation in screening programs, later diagnosis, lower uptake and completion of cancer treatment, and the presence of other chronic diseases [27, 98, 155]. Addressing the various factors that contribute to the development of cancer among Aboriginal and Torres Strait Islander people is important, but improvements in some of these areas, particularly in reducing lifestyle and behavioural risk factors, are likely to take some time to be reflected in better outcomes.
Current deficiencies in the prevention and management of cancer suggest there is considerable scope for better services that should lead to improvements in the short to medium term. Effective cancer prevention and management programs that are tailored to community needs and are culturally appropriate are vital for the current and future health of Aboriginal and Torres Strait Islander people [56, 57]. Providing effective cancer prevention and management also requires improved access to both high quality primary health care services and tertiary specialist services. Effective and innovative programs for the prevention and management of cancer among Aboriginal and Torres Strait Islander people do exist on an individual basis and, in some cases, the efforts made to engage Aboriginal and Torres Strait Islander people in screening programs, in particular, are impressive. However, a more coordinated, cohesive national approach is also required.
Reducing the impact of cancer among Aboriginal and Torres Strait Islander people is a crucial aspect in ‘closing the gap’ in health outcomes. The National Aboriginal and Torres Strait Islander cancer framework [56] may be an important first step in addressing the current disparity in cancer outcomes and raises the probability of real progress being made. Cancer Australia has recently released the Optimal Care pathway for Aboriginal and Torres Strait Islander people which recommends new approaches to cancer care and with the aim of reducing disparities and improving outcomes and experiences for Aboriginal and Torres Strait Islander people with cancer [156]. As encouraging as these developments are, substantial improvements will also depend upon the effective implementation of comprehensive strategies and policies that address the complexity of the factors underlying the disadvantages experienced by Aboriginal and Torres Strait Islander people.
Action beyond the health service sector that addresses the broader historical, social and cultural determinants of health are also required if real progress is to be made [6].
I think it was about eight or nine years ago I was diagnosed with a brain tumour,
The reason I’m vague on it is I actually don’t think it’s a day to remember. It’s not a celebratory day.
Thinking about my four children motivates me to keep going
I’ll be buggered if I am going to have the [child safety] department or someone like that come in and take care of my kids.”
Cancer is a leading cause of death among Indigenous Australians, but fear, stigma and shame mean it is rarely spoken about.
Ms Colleen Lavelle’s a Wakka Wakka woman, from Queenslandknown as @Proudbacksista tumour has been deemed inoperable, which means it’s considered terminal.
Colleen lives in Brisbane and through her blog she has become a support person for other Aboriginal people facing cancer, helping them with practical matters and being a friendly voice on the other end of a phone line.
She also accompanies some patients to hospital appointments and would like to see it made easier for Aboriginal volunteers to do such work.
“If you come from the Torres Strait and you’ve come down here and someone’s speaking to you really fast, rattling off all these medical things you’ll kind of be going, ‘what?’,” she said.
“If you’ve got someone, one of your own mob there it makes it easier.”
Close the Gap should be so much more than a photo opportunity or a morning tea. There are ways that everyone can help. I am going to share ten simple ones that I have been trying to get happening for years.
More Indigenous hospital liaison officers– Whatever title you use, we need more people in the hospital working for us. Big hospitals often only employ two, that is not even close to being enough. They should be employed around the clock.
Indigenous hospital volunteers– Hospitals need to have a separate army of volunteers, who deal exclusively with Indigenous patients, to spend time with the person from a remote area in a city hospital. To sit with someone having a long treatment. Just a friendly face in an alien environment.
Cultural Awareness Training (CAT) – Should be compulsory with all hospital staff, from the cleaner to the director. This training should address the issues and problems in health, but also needs to be localised to have the Traditional Owners from the area to share their knowledge. To truly let people understand, I am not talking a one of two-hour session a year, but a long, fully-formed training, with refresher courses each year. All medical and Allied Health professionals should do, and be assessed on, Cultural Awareness on a regular basis, and this needs to be registered. It is not good enough when a health professional does one course on Indigenous People and 20 years later still think that was enough. General Practice also need to have CAT, even if they are not signed on to CTG, because they are going to be seeing Indigenous patients.
General Practice incentive payments– GPs must lose their incentive payments if they sign on for the incentive and, during that time they don’t see an Indigenous patient. Again, they should lose the bonus if they are signed up and do not annotate the prescriptions for patients.
Indigenous people have the right of choice– We should be able to see a private GP or the local Indigenous Medical Service, or both if we want, but some funding seems to steer us towards the Indigenous Medical Service. This can be hard if it’s a long way from your home and you have to depend on public transport.
Employ more Indigenous peoplein the health sector, not just doctors – It can be as simple as a receptionist, who makes a difference.
Indigenous patients must be heard– Not just in the surgery but on national committees. Our experiences must be more than just fodder for researchers or funding applications.
Buck-passing – PHNs, Division of General Practices and other organisations, must stop handing over Indigenous units to others. You have patients that see so many doctors, you have to be responsible. Handing units over to Indigenous Medical Services etc, is passing the buck. It takes away our free choice. It is a way of saying you are not interested in our wellbeing.
Respect– Invite Elders to your hospital, clinic, whatever, on a regular basis, consider having an Elder in residence at your local hospital.
Recognise and celebrate our important dates– It smacks of racism if a hospital is decked out in green and shamrocks everywhere for St Patrick’s day and come NAIDOC, there is a morning tea, hidden away, with only a few people involved. Share it. Don’t even get me started on Australia Day. (Okay, just a little bit) Understand that we don’t think it’s great to wave the flag or want to be in your premises when you have complete overkill of decorations and start talking about how wonderful it is.
The unspoken illness: Cancer in Aboriginal communities
Aunty Tina has survived cancer, but seen several close relatives succumb to the disease.
“One minute you’re sitting down there with that person, that person is so healthy, and then the next time you see them they’re that sick, they’re that small you can hardly recognise them,” she said.
“People think of it as the killer disease.
“They see people in cancer wards and to look at those people it puts them into a depressed state, and they go home thinking that they’re going to end up like that.”
Aunty Tina said people need to know there is help available for cancer sufferers.
She is part of the Woorabinda Women’s Group who are working to raise awareness in the community about cancer so sufferers don’t feel isolated.
“When you’re well and up and running, you’ve got that many friends,” she said.
“All of a sudden you get sick, you find out you’ve got cancer, you’ve got nobody, it feels as if you’re on your own.
“There were times when I just wanted to go and commit suicide through the depression.
“But I sit down and think about things, I pull myself out of that deep hole.”
“Greater understanding of the burden of cancer among Indigenous populations is of major importance to public health given that poorer outcomes contribute to the lower life expectancies experienced by many Indigenous peoples.
WICC 2016 will provide opportunities to foster new collaboration, enhance capacity, and share knowledge and information about cancer and Indigenous people internationally.
“Navigating one’s way through the health care system can be arduous and fraught with uncertainty and fear for any cancer patient.
This common problem can be exacerbated for an Indigenous person. Indigenous adult cancer patients report substantial unmet supportive care needs, including provision of transport and appropriate travel arrangements, suitable accommodation for both the patient and their support person and extra psychological support.”
Assoc Prof Gail Garvey (chair), Menzies School of Health Research, Australia : A major focus of Menzies research is on improving Indigenous cancer patients’ experiences through their cancer journey and cancer outcomes.
Garvey, who is #WICC2016 Committee Chair, said cancer has been largely overlooked among Indigenous populations globally, despite research showing they have significantly greater mortality and lower cancer survival rates.
Cancer is the second leading cause of death among Aboriginal and Torres Strait Islander people and is responsible for more deaths each year than diabetes and kidney disease.
Cancer in Indigenous populations globally has largely been overlooked, despite evidence that Indigenous people in some areas have significantly greater mortality and lower cancer survival rates .
Indigenous people comprise about 6% of the world’s population, and their poorer health and social disadvantage are of increasing international interest, as evidenced by the formation of a United Nations Permanent Forum on Indigenous Issues two decades ago
Greater understanding of the burden of cancer among Indigenous populations is of major importance to public health given that poorer outcomes contribute to the lower life expectancies experienced by many Indigenous peoples. In attempts to reduce the global burden of cancer we need to also acknowledge and address the considerable cancer burden affecting Indigenous peoples around the world.
WICC 2016 will provide opportunities to foster new collaboration, enhance capacity, and share knowledge and information about cancer and Indigenous peoples internationally
Other keynote speakers and presenters include:
Professor Tom Calma AO – Chancellor, University of Canberra and National Coordinator of Tackling Indigenous Smoking (Australia)
Professor Richard Sullivan – Professor of Cancer & Global Health at Kings College London, Director at the Institute of Cancer Policy (UK)
Dr Linda Burhansstipanov – Director of Native American Cancer Research (US)
Dr Chris Wild– Director of International Agency for Research on Cancer (France)
Professor Helen Zorbas AO – CEO of Cancer Australia (Australia)
Associate Professor Gail Garvey –Principal Research Fellow at Menzies School of Health Research (Australia)
Our aim is to reduce Indigenous cancer disparities. We will achieve this by bringing together Indigenous communities and experts working in a variety of disciplines to discuss the latest findings in the field and to stimulate the development of international collaborations and encourage high quality cancer research
Cancer Australia at the World Indigenous Cancer Conference 12-14 April 2016
Cancer Australia is pleased to be a major sponsor of the inaugural World Indigenous Cancer Conference (WICC) being held in Brisbane 12-14 April 2016 and hosted by Menzies School of Health Research.
The theme for the conference is ‘Connecting, Communicating, and Collaborating across the Globe’.
Cancer in Indigenous populations globally has largely been overlooked, despite evidence that Indigenous people in some areas have significantly greater mortality and lower cancer survival rates. 1,2,3 Indigenous people comprise about 6% of the world’s population, and their poorer health and social disadvantage are of increasing international interest, as evidenced by the formation of a United Nationals Permanent Forum on Indigenous Issues two decades ago. 4
Cancer Australia at the WICC
Cancer Australia’s CEO Professor Helen Zorbas AO will be a key speaker in the international plenary panel session ‘Priorities moving forward’.
Cancer Australia will be hosting a facilitated seminar session ‘Putting the National Aboriginal and Torres Strait Islander Cancer Framework into practice’ with a panel of five leaders from cancer control and Indigenous health sectors. Panellists include:
Professor Jacinta Elston, Dean Indigenous Health in the Division of Tropical Health and Medicine, James Cook University (Facilitator)
Ms Amanda Mitchell, Deputy Chief Executive Officer, Aboriginal Health Council of South Australia
Ms April Lawrie-Smith, the new Chair of the National Aboriginal and Torres Strait Islander Health Standing Committee
Professor Tom Calma AO, National Coordinator Tackling Indigenous Smoking
Dr Mark Wenitong, Public Health Medical Adviser Apunipima Cape York Health Council
Professor Helen Zorbas AO, CEO Cancer Australia
Staff will be presenting oral presentations on:
Supporting Aboriginal and Torres Strait Islander people with lung cancer and their communities
Spread the Word!
Please share the National Aboriginal and Torres Strait Islander Cancer Framework to improve Indigenous cancer outcomes.
1. Suggested content for your newsletter
Cancer Australia’s National Aboriginal and Torres Strait Islander Cancer Framework identifies the national priorities for the many communities, organisations and governments whose combined efforts are required to address the disparities and improve cancer outcomes for Indigenous Australians.
Cancer Australia’s Framework provides high-level guidance and direction to all sectors to harness, maximise and leverage collaborative arrangements to improve cancer outcomes for Aboriginal and Torres Strait Islander people.
The findings in this Framework can assist in the development or review of Aboriginal and Torres Strait Islander cancer control plans and strategies to ensure collectively we are targeting the priorities that sit within each of our areas of influence.
2. Suggested Tweets
• Hear Prof Tom Calma explain the importance of National ATSI Cancer Framework! http://ow.ly/RqUxm #ATSI #Cancer #WICC2016
• How can we improve Indigenous cancer outcomes? Read the Framework! http://ow.ly/RqSOD #NationalATSICancerFramework #WICC2016
• We can work together to improve Indigenous cancer outcomes http://ow.ly/RqSOD #NationalATSICancerFramework #WICC2016
Study reveals true scale of Indigenous lung cancer disparity
Aboriginal and Torres Strait Islander people are almost eight times more likely to die from lung cancer than non-Indigenous Australians living in remote areas, new University of Sydney research shows.
In the first and largest study of its kind, PhD candidate Kalinda Griffiths from the Sydney Centre for Aboriginal and Torres Strait Islander Statistics investigated intersecting disparities in lung cancer care and outcomes amongst at-risk communities in NSW.
“It’s important to take into consideration the compounding effects of socioeconomic disadvantage and geographic locality when considering treatment and outcomes. You can’t look at Aboriginal disparity in isolation; we need to consider the complete picture,” said Griffiths, who is a former Northern Territory Young Australian of the Year.
“Existing studies into Aboriginal and Torres Strait Islander lung cancer rates usually only estimate for one measure: Indigenous status. But this neglects the fact that Aboriginal people often have multiple social statuses, which can be measured in different ways.”
As part of her PhD thesis, Griffiths examined linked data for 20,846 people diagnosed with lung cancer from the NSW Central Cancer Registry between 2001 and 2007. She then investigated the interrelationship between incidence, treatment, survival and mortality, based on socioeconomic status, Indigenous status and geographic location.
The results also revealed a gap in available data into lung cancer treatment for Indigenous patients.
“This might be due to people not accessing services, and this may depend on the patient’s remoteness or socioeconomic status. Being isolated from services, not having trust in the healthcare system and family responsibilities may prevent Indigenous people from accessing treatment options.”
Kalinda will continue to explore new ways to tackle such disparities in health outcomes for Indigenous people as an inaugural Wingara Mura Leadership Program Fellow. Launched in 2016, this new program aims to assist Indigenous early career academics with tailored guidance and support as they complete their PhD studies.
The full results will be presented at the World Indigenous Cancer Conference in Brisbane on 12 April 2016.
Cancer in Aboriginal and Torres Strait Islander peoples of Australia: an overview is one of a series of reports commissioned by Cancer Australia and developed in collaboration with the Australian Institute of Health and Welfare.
This report provides, for the first time, a comprehensive summary of population-level cancer statistics across a number of states and territories in Australia for Aboriginal and Torres Strait Islander peoples alongside comparative figures for non-Indigenous Australians
. It aims to document key cancer statistics to inform health professionals, policy makers, health planners, educators, researchers and the broader public of relevant data to understand and work towards reducing the impact of cancer for Indigenous Australians.
On average, per day, around two Aboriginal and Torres Strait Islander people are diagnosed with cancer and there is just over one cancer-related death.
Importantly, this report identifies significant differences between Indigenous Australians and their non-Indigenous counterparts. While incidence rates for cancer overall were marginally higher for Indigenous peoples, mortality and survival differences between the two population groups were more marked with cancer mortality rates 1.5 times higher and survival percentages 1.3 times lower for Aboriginal and Torres Strait Islander peoples.
This report also looks at the 10 most commonly diagnosed cancers as well as the 10 most commonly reported causes of cancer deaths for Aboriginal and Torres Strait Islander peoples of Australia, accounting for over 60% of cancers in these groups. Lung cancer was both the most commonly diagnosed cancer and the leading cause of cancer deaths for this population group. Differences between gender and across age groups are also identified.
Transcript of the ABC interview:
In a recent interview on ABC’s , Mark Colvin discussed findings from the Australian Institute of Health and Cancer Australia which indicates that Indigenous people are 50 per cent more likely to die from cancer than other Australians.
MARK COLVIN: It may be the most deadly reality of closing the gap: Indigenous people are 50 per cent more likely to die from cancer than other Australians. And that’s just one of the shocking findings contained in a new report from the Australian Institute of Health and Welfare and Cancer Australia. It’s the first comprehensive investigation into increased cancer rates among Indigenous Australians.
MANDIE SAMI: Cancer in Aboriginal and Torres Strait Islander Peoples of Australia: An Overview is the first comprehensive summary of cancer statistics for Indigenous Australians.
The head of the Australian Institute of Health and Welfare’s cancer and screening unit, Justin Harvey, says the report reveals disturbing facts.
JUSTIN HARVEY: Indigenous Australians are approximately 50 per cent more likely to die from cancer than non-Indigenous Australians and that’s quite a big difference between the two. The rate of new cases for Indigenous Australians is also higher and survival from cancer is poorer.
MANDIE SAMI: Kristin Carson is the chair of the Indigenous Lung Health working party for the Thoracic Society of Australia and New Zealand. She says it’s sad that she’s not shocked by the findings.
KRISTIN CARSON: This is something that has been going on for such a long time. I mean, we know that there is a disparity in health between Indigenous and non-Indigenous Australians. It’s actually atrocious.
A lot of Aboriginal and Torres Strait Islander Australians who see this probably already know it. They live this. This is the reality and I guess it’s these types of more shocking statistics that bring the kind of problems that we’re having to light.
MANDIE SAMI: The CEO of Cancer Australia, Professor Helen Zorbas, says there are a number of reasons why there’s such a huge discrepancy between Indigenous and non-Indigenous Australians.
HELEN ZORBAS: Those factors definitely include tobacco smoking, alcohol consumption, poor diet, lower levels of physical activity and higher levels of infections such as hepatitis B. In addition to that, Indigenous peoples are less likely to participate in screening programs.
Also, the proportion of Indigenous people who live in regional and rural and remote areas is higher than for non-Indigenous people and therefore access to care and services – we have a higher proportion of Indigenous people who discontinue treatment.
MANDIE SAMI: The head of the Institute’s cancer and screening unit, Justin Harvey, says even the types of cancer most prevalent among Indigenous Australians are different.
JUSTIN HARVEY: In terms of the most commonly diagnosed cancers for Indigenous Australians, these were lung cancer, followed by breast cancer in females and bowel cancer. Whereas for non-Indigenous Australians, the most commonly diagnosed were prostate cancer, followed by bowel cancer and breast cancer in females.
MANDIE SAMI: Mr Harvey says the report shows there needs to be more health promotion campaigns and services targeting Indigenous Australians.
JUSTIN HARVEY: The most important thing is that the information is used in looking at what are the needs and how best to address those needs.
MANDIE SAMI: That call has been backed by Kristin Carson. She says there’s also a need to evaluate whether current campaigns like these are working.
ACTOR, ANTI-SMOKING AD: I was smoking but I quit. If I can do it, I reckon we all can.
ACTOR 2, ANTI-SMOKING AD: Not quitting is harder.
MANDIE SAMI: Ms Carson says all Australians have a moral obligation to ensure that improving the health of Indigenous Australians is a national priority.
KRISTIN CARSON: Talk with community members, find out what we should be doing, and again, it highlights that we really need to be looking at research or evaluations in this area to try and better address this problem.
MANDIE SAMI: Associate Professor Gail Garvey is a senior researcher in cancer and Aboriginal and Torres Strait Islander Health at the Menzies School of Health.
She hopes the findings will make policymakers realise the devastating effect cancer is having on Indigenous populations.
GAIL GARVEY: Other areas, you know, such as cardiovascular disease, diabetes, kidney disease, which are all very important in their own right, tend to get the sort of focus, where cancer has just been sort of creeping behind all the other illnesses and diseases thus far.
So I think this report will give us a chance and give governments and health professionals and communities an opportunity now to actually look at what’s happening, you know, in black and white in this report, what’s happening nationally. And hopefully we can do something more about it than what’s currently being done.
MARK COLVIN: Associate Professor Gail Garvey, ending Mandie Sami’s report
Indigenous Australians being approximately 50% more likely to die from cancer than non-Indigenous Australians….with lung cancer at the top of the rankings
Aboriginal and Torres Strait Islander people have higher rates of new cancer cases and cancer deaths than non-Indigenous Australians, according to a report released today by the Australian Institute of Health and Welfare (AIHW) and Cancer Australia.
Cancer in Aboriginal and Torres Strait Islander peoples of Australia: an overview is the first comprehensive summary of cancer statistics for Indigenous Australians.
The report details the leading causes of cancer deaths for both Indigenous and non-Indigenous Australians.
AIHW spokesperson Justin Harvey said Indigenous Australians also had lower survival rates after a cancer diagnosis than non-Indigenous Australians.
‘Aboriginal and Torres Strait Islander peoples diagnosed with cancer between 1999 and 2007 had a 40% chance of surviving for at least 5 years, compared with 52% for non-Indigenous Australians,’ Mr Harvey said.
Cancer Australia CEO Professor Helen Zorbas said the report highlighted the significant impact that cancer had on the Indigenous population.
‘Whilst incidence rates for cancer overall were marginally higher for Indigenous Australians, mortality and survival differences between the two population groups are far more striking with Indigenous Australians being approximately 50% more likely to die from cancer than non-Indigenous Australians,’ Professor Zorbas said.
Mr Harvey said that while lung cancer was at the top of the rankings for both groups, differences emerged after that.
‘After lung cancer, the two most common causes of cancer death among Indigenous Australians are cancer of the liver and breast cancer (in females). For non-Indigenous Australians, the most common causes are lung cancer, followed by bowel and prostate cancer (in males),’ Mr Harvey said.
Professor Zorbas said the report emphasised the important work that needs to be undertaken to address the disparity between Indigenous and non-Indigenous Australians.
‘The findings of this report underscore the continuing action needed in health promotion, research and health service delivery to best meet the cancer prevention and treatment needs of Indigenous Australians,’ Professor Zorbas said.
The AIHW is a major national agency set up by the Australian Government to provide reliable, regular and relevant information and statistics on Australia’s health and welfare.
Cancer Australia provides national leadership in cancer control to improve outcomes for those affected by cancer their families and carers.
Aboriginal Cancer Partnerships Grants Program for Aboriginal Community Controlled Health Services in NSW
Open to Aboriginal Community Controlled Health Organisations across NSW.
(Max $180,000 over 20 months)
Background
Key dates, guidelines and application forms for all open grants offered by the Cancer Institute NSW’s Competitive Grants Program.
Applications for grants offered by the Cancer Institute NSW are sought from all NSW based universities, cancer services, hospitals, Area Health Services and other relevant agencies.
Applicants are requested to carefully consider the objectives, eligibility and selection criteria detailed in the Guidelines for each grant type to ensure they are applying for the most appropriate funding. If an applicant is unsure or would like to clarify any points please contact the grants secretariat.
More information about the grants application process can be found on the Applying for grants page on this website.
One-off Aboriginal Cancer Partnerships Grants Program for NSW
The Cancer Institute NSW is offering a one-off Aboriginal Cancer Partnerships Grants Program, funded by NSW Ministry of Health. The Aboriginal Cancer Partnerships Grants Program will support projects delivered by local health professional networks that build Aboriginal cancer control capacity and knowledge of health professionals across the spectrum of cancer control.
Grants are available for projects across the following three areas:
Clinical Placements and Site Visits
Health Professional Support Network and Ongoing Support
Partnership Building Between Mainstream Cancer Services and Aboriginal Community Controlled Health Services.
Four health and community organisations have signed an historic partnership agreement to work together to improve health outcomes for the local Aboriginal community at La Perouse.
Guriwal Aboriginal Corporation, the La Perouse Aboriginal and United Men’s Association, Eastern Sydney Medicare Local, and the Cancer Council NSW, signed on to formally work together to reduce cancer risks and improve access to local health services.
“Cancer affects many local Aboriginal people, families and the whole community, so it’s time we joined forces to fight this and many other chronic diseases,” she said.
Garry Ardler, from the La Perouse Men’s Group said men rarely discussed their health, but hoped the collaboration would “encourage more fellas to not only talk about but also take action to improve their health and wellbeing”.
Lisa Merrison, from Eastern Sydney Medicare Local, said the formal partnership recognised and progressed the important and successful work already been undertaken by each of the individual organisations, and demonstrated an ongoing commitment of future collaboration.
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