Introduction by Croakey: Most of the presenters and delegates at the recent World Indigenous Cancer Conference (WICC) were Indigenous people from around the globe who have chosen to work in the field of cancer. This included cancer biologists, epidemiologists, data specialists, policymakers, consumers, social scientists, clinicians, and others working in cancer-related fields.
As highlighted in a previous article, for many, the connection to cancer was personal. For all, the persisting inequity in cancer outcomes for Indigenous Peoples worldwide was a driving force.
A recurrent theme at the third WICC was the importance of Indigenous ways of being and doing, Indigenous leadership and Indigenous knowledges being central to every aspect of the cancer continuum – from prevention, to screening, bench science, data collection and stewardship, therapeutics, palliative and survivor care, and more.
In the article below, her last report on the WICC for the Croakey Conference News Service, Danielle Manton provides examples of this vital key to making progress – the concept of Indigenous Health in Indigenous hands – as evidenced at the conference.
Danielle Manton writes:
Speaking in the opening session of the third World Indigenous Cancer Conference (WICC), National Convenor, Associate Professor Kalinda Griffiths told the assembled delegates, speakers, and organisers, “We have come together for a concentrated purpose.”
This purpose was made clear throughout the conference by the demonstration of Indigenous Health in Indigenous Hands – through highlighting Indigenous leadership and expertise across the cancer continuum.
In the first conference plenary, Professor Linda Burhansstipanov, member of the Cherokee Nation of Oklahoma and President, Native American Cancer Initiatives, spoke about the way her culture underpins her work, and encouraged delegates to work in similar ways.
She said, “We need to act the way our ancestors act, in a good way. Our ancestors knew what the heck they were doing. We need to pay attention.”
First things first: centring Elders and youth
The centrality of culture was clear throughout the WICC, starting before the official conference began with the Elders and Youth yarning circle.
The order of these events was important. Gail Garvey AM is a Professor of Indigenous Health Research at the University of Queensland, and was Convenor of the first ever WICC in 2016.
In her wide-ranging plenary on advocacy, leadership and influence, she told the conference, “We privilege the voices of our Elders and our youth. We have to constantly be doing that in everything we do.”
Professor Malcolm King, a member of the Mississaugas of the Credit First Nation and Professor, University of Saskatchewan, said something similar in his plenary presentation:
We always think of the generations that shaped us, and the generations that are looking to be following us.”
These statements highlight the guiding role of the Elders and Youth forums in setting the WICC agenda.
The priorities identified in the forums were shared in the opening session for delegates to carry with them throughout the conference. Clear priorities were identified, all with a common theme of Indigenous Health in Indigenous Hands.
The priorities of the Elders and the youth were remarkably similar to each other: Indigenous leadership in decision-making, our way – “Indigenous knowledge systems at the forefront.”
This was supported by Professor Garvey who, in a later presentation, reminded the delegates, “We don’t have to fit into other people’s agenda”.
Drawing strength from culture
The yarning circle highlighted priority areas such as access to care that is Indigenous-led. This includes systemic support that involves families; that is culturally safe and inclusive of our ways of working, responsive to the local context and builds our own cancer workforce. And the importance of including Traditional Medicines within treatment.
Kiera, a member of the Djirri Djirri dancers who spoke to the conference ahead of the dancers’ performance, encapsulated the importance of all of the priorities from the forums, saying,
When my cultural life is strong, I am strong.”
Later, Professor Malcom King supported this, saying, “We’re the oldest cultures in the world – culture, language and tradition lead to a positive identity, and lead to positive health.”
Setting and driving the agenda
In her plenary presentation, Professor Gail Garvey drew on the knowledge Indigenous peoples have about our own health, within our own contexts, and made a call to action: “Indigenous peoples take our rightful place in control of our own individual but collective destinies.”
Garvey said,
We need you to walk with us. It’s time for action. We have to combine our collective advocacy. We need to privilege and centre Indigenous voices.”
Professor Malcolm King asked, “How can we as Indigenous peoples direct or redirect the cancer agenda?”
Professor Jacinta Elston, Vice-Chancellor (Indigenous) at Monash University and former Chair of Cancer Australia’s Leadership Group on Aboriginal and Torres Strait Islander Cancer Control, provided an example of Indigenous agenda setting in the Australian context. Elston, alongside other leading Indigenous experts in Cancer Care was part of the development of the Australian Cancer Plan.
In this interview with Croakey’s Marie McInerney, she said the purpose of this initiative was to “help strengthen the health system’s approach to thinking about how to provide care to our people”.
“NACCHO [National Aboriginal Community Controlled Health Organisation] has developed really significant resources that are going to go out and impact in the community-controlled sector to help strengthen their ability to support community and their cancer experience, but at the same time we want to make sure all cancer services are ready to see more and more Indigenous mob.”
In a concurrent session looking at cancer support and survivorship, Maori woman Vonda Nepia provided an example from her own context – her own cancer experience. Nepia said,
“I knew I had to start the process of restoring my power – to get my power back. I was frustrated with doctors, and they didn’t understand me, I was desperate to communicate better so I drew on Sir Mason Durie’s wellbeing model.
“They don’t get it they walk in with their clipboard, tick some boxes and turn away with the power.
“I got out my coloured pens and wrote Vondas Treatment Plan. I wrote down all my issues, I need help in these areas, I trust you’re going to do the chemo and whatever you need to do, but I need to sort this out.
“He [the doctor] walked in the next day and said, ‘Vonda how are you feeling spiritually today?’ I said, ‘Yes! This is going to work.’ The Doctor was no longer ticking boxes. He was writing for the charge nurse to organise for me to visit my [12-year-old] son, in a way that was COVID safe.”
Global Indigenous leadership
In another quote from Sir Mason Durie, Malcom King reminded the conference, “Indigeneity should not be considered a risk factor, it is actually a way forward.”
The truth of this was highlighted over and over at the conference, with Indigenous leadership clearly evident, and work being undertaken globally to improve outcomes for Indigenous peoples – work driven by Indigenous peoples – presented and showcased.
Information on Indigenous Health in Indigenous Hands, for cancer, at your fingertips:
Indigenous and Tribal Peoples and Cancer
This upcoming book was edited by Gail Garvey and an expert team of leading Indigenous academics. It has 77 chapters, all with at least one Indigenous author.
The book compiles global data on cancer experiences among Indigenous and Tribal peoples for the first time, prioritising their voices and weaving their perspectives throughout the text.
Once published (expected June 2024), the book will be available in hard copy and the electronic version will be open access, providing free and unlimited access. It aims to address the persisting disparities in cancer outcomes and offer a strengths-based approach to improving health interventions and research translation for these populations.
Rongohia Te Reo, Whatua He Oranga The Voices of Whānau Māori Affected by Cancer
This report was presented to the conference by Sasha Webb, Tumutuarua Mana Taurite – Director of Equity, Te Aho o Te Kahu – NZ Cancer Control Agency.
As Rami Rahal, Tumuaki/CEO, Te Aho o Te Kahu – NZ Cancer Control Agency, said when handing over to Webb, the report highlights “Maori knowledge in everything we do”.
Māori in Aotearoa face disproportionate cancer burdens, being 20 percent more likely to develop cancer and twice as likely to die from it compared to non-Māori, revealing inequities across the cancer continuum.
In 2021, Te Aho o Te Kahu partnered with local health organisations to conduct 13 community hui across the country, engaging with over 2,500 whānau Māori to understand their experiences, resulting in three reports available in English and te reo Māori, which will inform the agency’s future work and be shared with stakeholders shaping the new health system.
Kristine Falzon, Executive Manager, Waminda South Coast Women’s Health and Welfare Aboriginal Corporation, and Cancer Australia’s Dr Candice Woods presented this Indigenous-led resource at the conference.
Falzon said: “The reason we do what we do, even when it is really hard, is to improve outcomes for our people.”
On this website, holistic wellbeing facilitator and Māori woman, Vonda Nepia, shares her inspiring story, experience, and resources that enabled her to take her power back to create the treatment plan she needed.
The Australian Cancer Plan had Indigenous involvement and leadership from its inception, with 41 community consultations that contributed to its development and one-third of the plan focused on Aboriginal and Torres Strait Islander peoples – to help strengthen us in the space.
The next step
Indigenous Health in Indigenous Hands is key to improving outcomes for Indigenous Peoples but there is much more work to be done. Particularly as the therapeutic landscape undergoes radical change, ensuring everything we do across the continuum of care is underpinned by this principle will be vitally important.
“The next step is to go from what’s possible to what matters to our communities,” said Professor Alex Brown, Yuin clinician/researcher and Professor of Indigenous Genomics at ANU | Telethon Kids Institute.
Indigenous Health in Indigenous Hands – from X/Twitter
Author details
A Barunggam women, grown up on Dharug Country, Danielle Manton is a Senior Lecturer in Indigenous Teaching & Learning at the University of Technology Sydney (UTS). Danielle is a PhD candidate at UTS in the School of Public Health. Her PhD research explores privileging Indigenous perspectives and voices into the allied health curriculum.
Bookmark this link to track Croakey’s coverage, and follow the conference news on Twitter at #WICC2024 and via this Twitter list of presenters and participants.
