“It takes somebody who’s been in their shoes to help them navigate the medical world.”

Meriki is a proud Kurnai and Gunditjmara woman from the eastern and western districts of Victoria, with blood ties to the Wotjobaluk and Dja Dja Wurrung people.

Conversations about inherited cancer risk first became part of Meriki’s life when her mum was diagnosed with breast cancer. She encouraged Meriki and her sisters to have genetic testing. “She kind of forced me and my other two sisters to go and get those blood tests done.”

The sisters were tested together. Meriki remembers sitting at the Royal Women’s Hospital in Melbourne and learning that her siblings were clear, but she had a BRCA pathogenic variant (gene mutation).

“It was a bit of a shock to the system. I kind of remember tearing up a little bit and thinking more about my daughter and her safety and what that could potentially look like.”

Understanding health through family and kinship

The idea that health issues can be hereditary and pass through generations was familiar to Meriki. She says knowledge of family lines and kinship has long been important within Aboriginal communities, along with an understanding that some conditions are genetic. Openness and conversation are also important within the community. “Because our mobs are transparent, we believe talking is a form of healing, or at least it helps to get those emotions out.”

That openness took on new focus when Meriki learned she was BRCA-positive. “This is literally doing a full circle of three generations that could potentially be impacted.”

Meriki has been open with her daughter, gradually talking to her about inherited cancer risk since she was about 10 or 11. “My daughter is aware of the steps and checks I need to do. It’s a good conversation starter, because I’m also letting her know that sooner than later she’ll also have to get tested.”

She shares information in an age-appropriate way, helping her daughter understand what may lie ahead without scaring her.

When the system makes screening harder

As the sole income earner and main carer for her son, who has special needs, Meriki’s also carrying significant responsibilities within her family and community.

“Being on top of my health should be my number one priority, but it kind of unravels with everybody else’s needs.” Her screening has sometimes fallen behind. “I was really good at keeping up with my health. Now it’s a little bit trickier. I haven’t been for a mammogram in about three years, which really isn’t good. I’m meant to get screened every six months.”

Knowing what she needs to do hasn’t always made screening and follow-up easy, especially when the system creates more work.  “They’d be like, ‘Yep, you’ve got a cancer screening coming up,’ but they wouldn’t actually explain where to go or the actual date or logistics. I ended up having to do a lot of the follow-up and chasing.” Meriki says she has “fallen through the cracks” more than once.

Cultural safety is part of access

Meriki explains that for First Nations peoples, hesitancy about accessing hospitals and mainstream healthcare can run deeper than practical barriers. It can be linked to past experiences that are still within living memory.

“Taking people to the hospital back in those times, it was almost like a place you went to die, not a place you went to get better or healed. There’s always been trust issues in the medical field with us, and it wasn’t that long ago. It’s still last generation.” That history also affects how health information is received.

Meriki believes inherited cancer information needs to be shared through trusted people and places within community, such as NAIDOC events and Elders’ lunches. “It’s a lot easier to have a representative that is a Blackfella. The trust is there, which makes it so much easier.”

Support that works for individuals and communities

Trust also grows when services understand what people in community are already carrying. “Like our aunties and our grandmothers, [they’re] helping raise their grandchildren, dealing with their own health issues, and then add a whole lump of community issues, politics and sorry business, and it’s just not enough hours in the day.”

Through her work at BreastScreen Victoria, Meriki has seen how support can respond to an individual’s circumstances. That might include transport, childcare, food vouchers, phone credit or help navigating the health system. She has also seen what culturally safe care can look like in practice. “They’re already incorporating things like cultural images [and] artwork to make Blackfellas feel a little bit more comfortable.”

“We do smoking ceremonies. It’s a cleansing. It’s getting rid of all the negative energy or entities that are around and feeling a lot more safe.” Meriki says these approaches are “helping to build a bridge between the mainstream medical world and small community organisations.”

For Meriki, trust comes from showing Aboriginal communities that healthcare services understand the barriers they face and are willing to work with them to remove those barriers.

“Actions speak louder than words. If we see that you genuinely care and you’re pushing for this, we’ll fight.”