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World-first research program to find out why First Nations children have worse cancer outcomes, survival rates

A world-first program led by Perth researchers will investigate why First Nations children with cancer have poorer survival rates in a bid to transform the way they are treated. The Kids Research Institute Australia program, launched on Wednesday, aims to identify the main barriers to improved outcomes and why the side effects of cancer treatment are so severe in Aboriginal children. Led by Kamilaroi woman and paediatric brain cancer researcher Dr Jessica Buck, it is the first research project of its kind to be Aboriginal-led, culturally informed and community focused. “We really don’t know much about First Nations kids with cancer because there’s been hardly any studies done,” Dr Buck said. “There’s less than 10 research studies that have ever been done ... so the level of knowledge at the moment is very low. “What we do know so far is that they have worse survival rates, but we don’t know why.” This is particularly the case in the Northern Territory, where the five-year survival rate is 38 per cent for First Nations children and 79 per cent for other children. Australia-wide, the survival rate for First Nations children is as low as 70.6 per cent compared to 83.5 per cent for other Australian children. “We think it’s probably a combination of clinical access, biology and social determinants of health,” Dr Buck said. “What I’m hoping to do is unravel that and work out how we can find better treatments for First Nations kids with cancer.” Dr Buck said the project would first and foremost be guided by what the community wanted out of such a project. “We’re talking to Aboriginal families who’ve had a child diagnosed with cancer, we’re talking with local elders, we’re talking with Aboriginal doctors who work in the childhood cancer space, and we’re asking them what they need from a new research program,” she said. “What things do they wish that research had the answers to? How could their journey through childhood cancer have been improved when their family was going through it?” The project will be led by a community advisory group made up of local elders and community members with lived experience of childhood cancer, supported by Noongar woman and Aboriginal community engagement coordinator Elizabeth Wilkes. One of the early recruits has been Menang Goreng elder Averil Williams, whose daughter battled and survived leukaemia. Ms Williams said access to information to better inform community was crucial to reduce any fear or uncertainty around treatment. “It’s like when my little girl was diagnosed with leukaemia. I said, I want to know what’s going to happen. I want to know what’s the treatment,” she said. “For our mob to have access to that information, and by this getting out into the community, it will become more receptive than a fearful thing.” Childhood cancer survivor Tremane Baxter-Edwards said the new research project would bring “greater advocacy and greater attention” to Aboriginal kids’ cancer experience. He was diagnosed at age three with Burkitt lymphoma, a rare, fast-growing and aggressive type of blood cancer, so doesn’t remember much about his treatment. “I do recall leaving home for a long period of time ... that was one of the difficult processes, along with chemo,” Mr Baxter-Edwards, now 18, said. He and his three siblings lived more than 3000km away in Wyndham, in the Kimberley region, meaning his single mother had to travel down to Perth with a sick toddler while his grandparents helped raise his siblings. Dr Buck’s research offers a way forward for First Nations children and their families as they navigate cancer treatment, he said. “It is a frightening period of someone’s life, doesn’t matter if you’re Aboriginal or not, it’s a very frightening thing for your family and yourself,” Mr Baxter-Edwards said. “Dr Buck, being an Aboriginal woman herself, makes it a lot more inviting in the sense that we’re able to have a lead researcher on something that is so near and dear to a lot of people’s hearts, including myself.” Dr Buck and her team will also investigate pharmacogenomics, which looks at the way someone’s genes affect how they respond to medicines. “Pharmacogenomics has never really been studied in Aboriginal people — adults or children — for cancer or other conditions,” she said. “And so we wonder whether Aboriginal patients might be metabolising or processing the medicines different in their body.” Genetics may also be able to identify why Aboriginal children are more prone to acute myeloid leukaemia, with very little known to date about why this may be. It’s a big undertaking, but Dr Buck is well and truly up for the challenge. It’s personal for her, too. “My nan passed away from breast cancer when I was little, and that’s always been one of my motivators to go into science and medical research,” she said. “I’ve had a lot of scientific training and I’ve always wanted to use that to be able to give back to community and help improve outcomes for cancer in Aboriginal communities.”

The West Australian exclusiveWorld-first research program to find out why First Nations children have worse cancer outcomes, survival rates

exclusive
World-first research program to find out why First Nations children have worse cancer outcomes, survival rates