Breast Cancer Treatment Australia

thank you gail and i wanted to start by particularly thanking aunty carol currie who i think provided such a poignant welcome, not only to country but also to the theme of working together on cancer and already the changes and improvements that she has recognised even in her experiences of cancer personally. i'd also like to begin by paying my respects to the traditional owners of the land on which we

gather and to respect the elders past and present as well as aboriginal and torres strait islander people here today. as gail said, it's really a great pleasure as ceo of cancer australia to welcome you all to this national forum which brings together people who are working in the space of cancer on the ground with aboriginal and torres strait islander people with some of the best experts across the country

to help us share information and resources and try and address what is a significant cancer gap for indigenous people. and the overwhelming response that we have received as gail has already said, over 160 people, have agreed to participate in this forum. this has exceeded our expectations and i think it very clearly identifies that it was a gap that we're addressing and also the great enthusiasm

and commitment that health workers have in making a difference in this space. so i'm going to start by providing you with a background to our two day forum. so who is cancer australia? what do we do? first of all, it's important to note that cancer is a national health priority and cancer australia was established in 2006 to be the lead national cancer agency.

it was established under an act, the cancer australia act which states that we're to benefit all australians who were affected by cancer, their families and carers. so we are a government agency within the health portfolio. and we work to reduce the impact of cancer and improve the well-being of those affected by cancer, and we provide the leadership through the analysis and the interpretation of the best

available evidence into information resources, into policy advice, into service delivery and innovative models of care and into research priorities. and we'll talk a bit about that further. we function in our leadership roles though engagement across sectors and with communities and groups. and that's really critical to success. coordinating our efforts is where we will get the greatest gains. our remit is across all cancers, although

we do have, we are charged with having particular focus in breast, gynaecological and lung cancers, but we also have a specific focus on population groups who experience poorer health outcomes and this of course includes aboriginal and torres strait islander people. so why is cancer a national health priority? why are we focusing on cancer in indigenous people? so i'm going to go through highlighting some of

the key facts to provide a context for our forum and there are a number of graphs and quite a few numbers that i will be talking about, but really i think what i'd like for you to do is really concentrate on what's the key message of the graph and what's the key message of the numbers in the data that we're talking about because that's what we really want you to take away with you. so cancer is the leading cause of burden of

disease in australia and this is across the whole population. that means that cancer is responsible for the greatest number of years of healthy life lost due to premature death or due to disability. so the premature death is the dark blue line and the years of healthy life lost due to disability are the light blue. and as you can see, for the whole of the australian population, cancer is the leading cause of years of healthy life lost compared to

other diseases. so to explain this further, if you've got someone who is healthy but dies suddenly 20 years earlier than would have been expected, then that's 20 years of healthy life lost. but if a person lives to old age but has only had half, has only been half well say for 30 of those years, then we say that they have been regarded as having 15 years of healthy life lost due to disability. so that's kind of how we explaining years of life

lost and burden of disease. remember again, we looked at the trends across the whole population in australia. the number of people diagnosed with cancer continues to increase and this is primarily due to the aging and the increasing size of the population. and as we saw with aunty currie this morning, we're expecting to live longer lives, our life expectancy is increasing across all population

groups and we can expect to grow older and as a result of that, we are expecting to have a greater risk of cancer. so more of us will be diagnosed with cancer. but there are also lifestyle factors that are impacting on these increasing numbers of people diagnosed with cancer. factor such as smoking, obesity, a lack of exercise, all of these factors increase cancer incidents.

over the population as a whole, one in two men and one in three women can expect to be diagnosed with cancer in their lifetime. last year, 125,000 people in australia were by 2020, that number is expected to increase to 150,000. that's an increase of 20% over a seven year period. the good news is that overall, cancer survival is improving. and if you look at those bars, the lighter blue bar dates back to the mid 1980s and the grey bar

brings us up to as close to the present as we are able to provide you with data for and their time frames in between. the first lot is in men, the next lot of data relates to women and the third lot relates to the population overall. so if we look at that five year survival measure, which is a way that we look at the proportion of people who can expect to be alive at least five years after their cancer diagnosis, that's improved from 47% in the mid 1980s to now 66%.

that's a huge improvement with going from less than half to now two in every three people living at least five years after their current cancer diagnosis and that's happened in the period of my children's lifetime. and the reason that's happened is because of earlier detection and improved treatments. and that's, the data tells us that that improvement is about 50-50 due to screening and early detection and 50-50 due to improved treatments.

so both of those aspects are really important if we're going to address the indigenous cancer gap. now these data represent what's happening across the whole population. however, not all population groups are enjoying those same good survival outcomes. variations in outcomes exist for people who live in rural and remote areas, for those people who live in lower socio-economic groups and for

aboriginal and torres strait islander people. if we look specifically at the aboriginal and torres strait islander peoples across all cancers, about two aboriginal and torres strait islander people are diagnosed with cancer each day in australia. compared with non-indigenous australians, they're about 6% more likely to be diagnosed and to develop cancer and they're about 50% more likely

to die from that cancer compared with non-indigenous australians. the five year survival rate as we saw earlier is about 30% lower for indigenous australians compared with non-indigenous australians and that's across all cancers. so that's why we're here with you today, to address this gap. and we're focusing on two of the most common cancers that affect aboriginal and torres strait

islander people, both men and women. and if we look at what they are, the most commonly diagnosed cancers in indigenous men and if you concentrate on the coloured bars, they are the statistics that relate to indigenous populations and the grey bar throughout the presentation relates to the non-indigenous population. so here, we have the men in blue and you can see that lung cancer is really the most common cancer

by far in indigenous men and far exceeds the incidence that is in non-indigenous men. lung, prostate, and bowel cancer are the top three cancers experienced by aboriginal and torres strait islander males. when we look at the same statistics in relation to aboriginal and torres strait islander females, breast cancer is the most common cancer followed by lung cancer and bowel cancer.

and here you can see that although breast cancer is the most common, so it's higher than the pink line for lung or bowel, it is actually lower than the grey bar for breast cancer. so the proportion of women who develop breast cancer in indigenous population is less than in the non-indigenous population. when we look at some specific cancers and i think this is where the data gets very telling in

comparison to non-indigenous populations, the mortality rate or the risk of dying from cancer is about four and a half times higher, for women with cervical cancer. it's 30% higher for those with pancreatic cancer and for women with breast cancer. it's about 70% higher for those with unknown primary site. thirty per cent - i already said that 30% higher for breast cancer and almost twice as high for

lung cancer. and importantly, and i think this is where we're seeing the greatest impact on the indigenous community, is that a greater proportion of indigenous australians die from cancer at a younger age than non-indigenous australians. so for indigenous australians, about 29% of people died from cancer when they were under 55 years old compared with 10% of indigenous australians who died of cancer under 55 years old.

and this translates to poorer survival. we can see that clearly on this graph. again, if you concentrate on the yellow bars, we look at survival which is a measure of the proportion of people alive five years after their cancer diagnosis for the five most common cancers that are experienced by indigenous people and also when we look at all cancers combined. whichever way we look at this, the outcomes are

poorer for indigenous people and the information that we've gathered here is data that, and as you would be aware, we don't have complete national data, but the best data we have comes from new south wales, queensland, western australia and the northern territory. so this is another way of looking at burden of disease but this time we're looking at burden of disease in relation to aboriginal and torres

and what burden of disease does, it looks at the impact of diseases on the population. so here we're looking at what diseases caused the greatest impact on the aboriginal and torres strait islander people in terms of premature death or disability. and we can see here that cardiovascular disease and mental disorders are top of the list. but you can also see where cancer sits in

relation to these, to all those diseases. and cancer is the third highest burden of disease together with diabetes, equal to diabetes in terms of its impact on indigenous people. however importantly, because there's a greater proportion of people in the indigenous community diagnosed at a younger age, dying of a younger age and a greater proportion dying of cancer overall, the burden of disease due to cancer is

about 70% higher in the indigenous population than it is in the total australian population. so why do we think there are such differences in cancer outcomes? what are some of the factors that are impacting on this disparity? for a start, aboriginal and torres strait islander people have higher rates of certain lifestyle risk factors. higher rates of tobacco smoking, alcohol

consumption, poorer diet, lower levels of physical activity and high levels of hepatitis b infection. so the higher prevalence of these risk factors is contributing to the patterns of cancer incidents and mortality that aboriginal and torres strait islander people are experiencing. we know that early diagnosis is vital to surviving cancer. the earlier the cancer is diagnosed, the more effective that treatments can be.

and we have government screening programs in breast, cervical and bowel cancer established across australia. and currently, aboriginal and torres strait islander people have lower participation in national screening programs and professor rosemary knight from the department of health will be speaking later in this session this morning about our national screening programs. so lower participation in those screening

programs is something, is a factor that we need to address. we also know that access to treatments often requires being away from home for extended periods of time. and this can be quite alienating and you know without people's support around them, it may impact on their decisions about starting or completing treatment and thereby not actually getting the full benefit of the treatment that's available. we also know that indigenous people have higher

levels of co-morbidities. they've got other illnesses at the same time as their cancer that can impact on their outcomes. and there are also a number of cultural taboos and myths about cancer which can impact on behaviour in relation to cancer. it's often seen as a death sentence or a white man's disease or a punishment, payback, curse or even been considered contagious.

so in this context, prevention and treatment are not always going to be high on the agenda. and these can all impact on behaviours and on decisions that can contribute to poor outcomes. so we need to work together to address the indigenous cancer gap. and the sorts of things that we need to do are improve on the lack of knowledge and awareness of risk factors.

improve the understanding of the symptoms of cancer and the importance of early detection. the importance of participation in screening, of reporting symptoms and continuing treatment. diagnosis at a later stage can occur because of the lack of awareness and that diagnosis at a later stage really means that treatments can be less effective. and so we need to really impact on bringing the

stage of diagnosis as early as possible. as i also mentioned earlier, being treated and cared for away from home is a very alienating experience and we need to be able to provide information and support that encourages people to continue with their treatment and to provide services that are culturally appropriate so that indigenous people feel respected and supported and able to undertake and complete their treatment.

in australia, we have made huge strides in the early detection, diagnosis and treatments of cancer and we really want the indigenous community to benefit maximally from those improvements. so how is cancer australia working to improve cancer outcomes for aboriginal and torres strait islander people? well, we're basically working along three paths. one is building and analysing the best available evidence and the evidence comes from research and data.

we fund priority research and we commission a review research and we build the evidence-base having looked at the best available data. and this improves our understanding of cancer control. it identifies the gaps and really helps us to prioritise and direct our work and focus. the evidence also can tell us which strategies are effective and again, we can use that to guide what we know will work best within the communities.

we have a focus on building the capacity of the indigenous health workforce and the communities in which they work. and we do this through evidence-based information, resources, tools and training. we also know that a supportive, engaged community is vital to impacting on outcomes and we have developed an engagement model which really supports the community to be part of the process

of change through their assistance. the key components of the model of engagement are evidence translation, and this is what cancer australia does on a daily basis. a rigorous process of reviewing the evidence and translating that into meaningful information and in this case into culturally appropriate meaningful information for specific population groups. we engage with community, really important.

cancer australia does this both formally and informally. formally through our aboriginal and torres strait islander advisory network and through the working groups that we have established for across all our projects and it's great to see a number of members of those working groups here with us today. and we also work with engagement informally through local contacts community leaders. we do this by visiting communities, by meeting

people face to face, by conducting focus groups, calling on contacts and using them to support specific projects. collaboration and capacity building is another vital plank of this model of engagement. it's ongoing and it's undertaken with health services, with health professionals, key community leaders. message repetition is very important. you will hear some of the messages that were in senator nash's welcome to you this morning,

repeated by me, repeated by others through the forum. it's really important that you take those messages and you repeat them in your communities and the places where you work. so it's the consistent application of key cancer messages in our resources, in the opportunities that we create in forums and community engagement which are really important and we have found that elders are a very powerful way of promoting message repetition.

sustainability is also key to our model of engagement. cancer australia provides grants, training, resources and practical support to both individuals and to organisations to implement some of our activities ensuring that they're locally implemented within the communities and this supports longer term sustainability. i mentioned our aboriginal and torres strait islander advisory network and i'm not sure if you

can read all those names but this network has been really critical to providing advice to us about the way we go about our work with aboriginal and torres strait islander communities and they were instrumental in developing the program and supporting the development of the messages for today. all our work in atsi communities is informed by this advisory network and it includes members

with expertise in indigenous public health, in education and training, epidemiology in the delivery of cancer care and as well as people who have had a personal experience of cancer and we're really delighted to have some members of that network here with us over these two days with the forum. so one way in which cancer australia is working to build the evidence is through research.

and we have a priority-driven collaborative cancer research scheme, a big mouthful but it actually says that cancer australia, with funding partners, funds research in areas which it considers to be priorities. where there is a gap identified. and for cancer australia, funding research in aboriginal and torres strait islander people and cancer is one of our research priorities.

another key aspect of our approach is analysing the evidence from research and data and in recent years we've commissioned two really significant foundational reports. and these guide our directions and our priorities in focus areas. in 2010, we commissioned the aboriginal and torres strait islander cancer control research report and it was charged with looking at what the evidence was around reducing disparities

across the cancer control continuum. and there were a number of recommendations from that report that have been taken up by groups across the country and researchers and of course taken up by cancer australia as well. more recently, cancer australia commissioned the australian institute of health and welfare to develop the first national comprehensive statistical report on cancer in aboriginal and

torres strait islander people. it provides for the first time the most up-to-date data available and that's the data that i've been using in the graphs that i presented. it's a comprehensive picture for the first time about cancer in aboriginal and torres strait islander people and it provides a basis on which we can monitor improvements over time and there's a summarised version of that quite big report.

it's called the report to the nation and it's in your bags and copies are also available for downloading from our website. so now to the focus on the two most common cancers affecting aboriginal and torres strait islander people. breast cancer is the most common cancer in indigenous women. and although they're 20% less likely to develop breast cancer compared with non-indigenous women, they are actually 30% more likely to die from

breast cancer than non-indigenous women. the lower incidents but higher mortality rates could be explained in part by the lower participation of indigenous women in breast cancer screening. it's about 36% compared with 54% in the non-indigenous females. and this suggests that breast cancers may be diagnosed at a later stage and that that is what's impacting on the cancer outcomes. cancer australia has undertaken a number of

initiatives to help address those poor outcomes for aboriginal and torres strait islander women with breast cancer and we've been focusing on building the capacity of the community and of health workers. we have developed a program of well women's workshops and they provide an opportunity of health organisations and individual health professionals to promote and encourage breast awareness and early detection of breast cancer.

of the three years that we had these workshops, 2010 to 13, a total of 55 well women's workshops were conducted across australia and 1,150 aboriginal and torres strait islander women attended those workshops and received those critical messages. cancer australia enables these workshops to take place through the provision of grants and resources to support health workers and

locally-based organizations to run the workshops in their communities. and we do this in line with our engagement model which is around supporting sustainability as a key element. we have just recently awarded another 21 grants to local organisations to run a total of 42 additional well women's workshops across queensland, new south wales, the northern territory, south australia, victoria and western

australia over coming months. and the grant recipients receive a really comprehensive resource pack which includes presenter's notes, how to run the workshop, a dvd and promotional materials. to support women in navigating that breast cancer journey, together with the menzies school of health research, cancer australia developed a guide. it's called, "my breast cancer journey: a guide

with breast cancer." it was launched last year in october on pink ribbon day at a very big event in sydney, the pink ribbon breakfast, by the minister for health, the honourable peter dutton. the guide outlines the breast cancer journey for aboriginal and torres strait islander women and families in a culturally sensitive manner and importantly, it supports women to understand what to expect, to increase their involvement in their

care and treatment and to be able to make better informed decisions and importantly to complete treatment. focus testing was undertaken with aboriginal and torres strait islander women at all stages of disease and we really have worked hard to promote this resource because it has been identified as being a very valuable one to the women who've received it. so to date, over 1500 downloads from our website on this resource and approximately 3000 copies

have been disseminated and they've gone to aboriginal medical services, community health services, breast screen services and individuals. cancer australia has also worked to increase the skills and knowledge of health workers through accredited, recognised training. so in consultation with the aboriginal and torres strait islander registered training organisations national network - that's a mouthful - we

developed a cancer australia unit of competency and i'd like to acknowledge hannah nancarrow who is one of our key staff in the indigenous era who was instrumental on the development of that unit of competency. and it is now an elective unit within the aboriginal and torres strait islander health worker primary care certificate 3, 4, and diploma. so that's a really important opportunity to get

recognised training in breast cancer and we have supporting resources to assist the registered training organisations in delivering the unit. there's a learner's resource, a learner's a guide, a facilitator's guide and a powerpoint presentation. and copies of all of these resources are provided on a disk in your bags. to date, we've had 32 health workers who've received, been at the other end receiving this

unit of competency that was delivered by registered training organisations in alice springs, bundaberg and broome. and now to lung cancer. a priority area for cancer australia and the most common cancer experienced for aboriginal and torres strait islander men and the second most common cancer in aboriginal and torres strait islander women.

compared with non-indigenous australians, aboriginal and torres strait islander australians are almost twice as likely to develop lung cancer and almost twice as likely to die from lung cancer. so they have a lower chance of surviving five years after their diagnosis. we know that smoking is the biggest respecter for lung cancer and we know that indigenous australians are more likely to smoke than

41% of indigenous australians smoke compared with 16% of non-indigenous australians. that's two in five aboriginal and torres strait islander people over 15 years of age smoke on a daily basis in australia. the good news is however that those smoking rates have been declining over time. so we've progressively gone from 49% to 45% in 2008 down to 41% in the most recent data.

and even more positive is the message around younger aboriginal and torres strait islander people. the proportion of people, 15 to 17 years who have never smoked has increased from 61% to 77% and that is really the most promising i think factor in addressing lung cancer outcomes. we're also building capacity in communities and health workers. we have developed a community education workshop model called, "our lungs, our mob" and it's been

developed for aboriginal health workers and tobacco action workers and we've been piloting this in northern territory, in hermannsburg, in yarrabah in queensland, bunbury, western australia, and a training session with 25 tobacco action workers was run recently in adelaide in south australia. and we're incorporating feedback constantly into this resource and training is actually going to be held tomorrow on how to run this workshop and

we look forward to your comments and feedback and thank you for helping us make this the best resource we can so that we can have key messages delivered about lung cancer, about care and support and providing with the health workers with the best information so that they can impact on lung cancer in their communities. so this brings us to today. the national aboriginal and torres strait

islander cancer forum program was developed specifically to provide you with the opportunity to hear from some of the best experts in cancer across the country, to network with colleagues from across different service settings and to feel supported in sharing your own experiences. and that's really important. we hope you feel comfortable and supported in that environment to share your knowledge and

experience with us all. and that's the way we will all grow. cancer australia, as the national cancer control agency, is seeking to work with you to address the cancer gap in your communities. and with that, i would like to end by again saying how pleased we are to host this first national aboriginal and torres strait islander cancer forum for health professionals working in

aboriginal and torres strait islander communities. we hope you find the next two days rewarding, stimulating, that you engage and network with colleagues, that you exchange phone numbers, email addresses, share stories and ultimately that through this forum, we have helped you to do the very best job you can to address the indigenous cancer gap in the communities in which you work. thank you.