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When Amanda Hall’s young granddaughter Aaliyah was diagnosed with cancer, she was given just over two months to live. No clinical trials were available, but clinicians suggested a biopsy.
“I said, Hang on, we’ve got to have a family discussion,” Hall said. “I rang my parents up because they’re the elders in the family, and the first thing they said was: We’re against all that. They’re only doing biopsies for their own purposes.”
Decades of medical trauma have left their mark on First Nations communities. From reports of experiments performed on the children of the stolen generation to personal experiences of racism, Hall and her family remain wary of Western medicine.
Aaliyah died of a brain tumour at just seven years of age.
A new research program from the Surgical Outcomes Research Centre (SOuRCe) and the NHMRC Clinical Trials Centre aims to improve access to cancer clinical trials for Aboriginal and Torres Strait Islander Australians.
First Nations Australians are 1.4 times more likely to be diagnosed with cancer and twice as likely to die from the disease as non-Indigenous Australians. Despite these poorer outcomes, they are also 2½ times less likely to participate in surgical cancer clinical trials, limiting access to innovative treatments and models of care.
Cancer patients who participate in clinical trials often benefit from earlier access to cutting-edge treatments, closer monitoring and follow-up, and in many studies, improved survival, lower complication rates and shorter hospital stays.
The new Australia-first program aims to address this inequity by improving Aboriginal and Torres Strait Islander participation in cancer clinical trials through community-led, culturally safe approaches.
Led by Professor Daniel Steffens and his team, the project was developed over the course of two years through workshops and collaboration with more than 150 community members in regional and metropolitan centres such as Redfern and Tamworth.
“It was very eye-opening,” Steffens said. “To be honest, I didn’t know how it would go, but once we had the initial interaction, we were amazingly welcomed into the community.”
The range of materials created included both a guide answering common questions for prospective First Nations participants and resources for researchers aimed at helping them to strengthen Aboriginal and Torres Strait Islander engagement.
For Priscilla Johnson, who participated in the workshops after losing family to cancer, the resources will be used as “tools” for both current and future generations.
“It’s going to educate whole families. They’re going to get up to date, they’re going to be empowered, they’re going to be strengthened, and they’re going to take control of their pain relief, their healing, their love and their loss,” she said.
The project will begin to roll out in hospitals across the Sydney Local Health District this week, with plans to expand it throughout NSW and Australia in future.
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