Boe Htoo is in a hurry. Being a refugee project worker with Bendigo Community Health Services keeps her incredibly busy. That’s because, as Karen former-refugees, she and her colleague Nido play a crucial role in connecting the Karen community with lifesaving cancer prevention, screening and treatment support as they settle into their new lives.
This time, she’s off to accompany a fellow Karen former-refugee to his second-last immunotherapy appointment for lung cancer. The success of his treatment is significant for a community that has only seen cancer result in death. His survival, a beacon of hope – providing the reassurance many need to engage with health services, get screened, and believe lives can be saved.
A refugee’s journey
Arriving at just six-months old in Northern Thailand, Boe Htoo spent 32 years of her life in a refugee camp. She trained and worked in the camp hospital for nine years before being granted refugee status, moving to Australia and eventually settling in Bendigo.
The ethnic minority from southern Myanmar and Northen Thailand have for decades been targets of violence and human rights atrocities from the Myanmar military – but their plight goes largely unnoticed by the rest of the world. On average, members of the Karen community spend 17 years confined to refugee camps under basic living conditions. Their movements are tightly restricted by Thai authorities, and access to healthcare is limited to only the most essential services – making any cancer care virtually impossible.
“When we lived in the camp in Thailand, we couldn’t refer people for treatment, and they died,” says Boe Htoo.
“That's why when they hear the word ‘cancer’, they believe it’s a disease that can’t be treated.”
A community in need
Around four thousand Karen former-refugees now call Bendigo home, making Karen the second-most spoken language in the region after English. However, their years spent isolated in camps before settlement have meant many are in poor health on arrival.
As a Cultural Diversity and Relationships Facilitator, Abbie Lockwood, works with Boe Htoo and Nido along with other Karen and Afghan former refugees, like Zahir, at Bendigo Community Health Services.
“We unfortunately started seeing really late-stage diagnoses exclusively within our Karen community. Really poor engagement with health services and just really tragic outcomes,” says Abbie.
Recognising a significant gap in settlement health support, their boss, Kaye Graves, advocated to change this. “We don't want any more funerals,” she’d said. “We need to do something.”
The team launched a three-year project in partnership with Loddon Mallee Integrated Cancer Service and in collaboration with Bendigo Regional Cancer Centre. Cancer Council Victoria provided the team with training around prevention, screening and early detection and intervention, along with resources they adapted to be culturally and linguistically relevant to the Karen and Afghan communities. They’ve held community sessions and created in-language print and audio materials.
“It's been really lovely actually, in terms of those education sessions or sitting with families listening to Boe Htoo. Just that reiterating to people that ‘you're in Australia now, this healthcare is there for you’,” says Abbie.
Barriers to care
Liver cancer is rising in the Karen community, a result of hepatitis infection contracted at birth or in childhood. Stomach and lung cancer are also common and speak further to the stress and conditions they faced as life as a refugee. Contaminated water, Helicobacter pylori infection, chewing betel nut, nicotine and alcohol have all likely played a role in the cancer types presenting in the community.
One of the challenges the team has faced is with community members not wanting to burden others with their issues. They feel guilty about this – ‘Ana’ as it’s known in Burmese – and it’s a significant barrier to asking for help.
“When you don't have access to care, no one's asking you what you need. You're sitting on your symptoms and you're not speaking up until it becomes too much to bear,” says Abbie. Convincing them that healthcare workers want to see them and help them early is where Boe Htoo and Nido come in.
“For people with a refugee background, once they arrive in Australia, health care issues are not really the priority for them,” says Nido. “Paying rent or bills is more important. Survival is more important, so most of the time people ignore their health instead of prioritising it.”
Building trust
The teams’ approach to supporting both Karen and Afghan former refugees is deeply personal. They accompany patients to appointments, take notes, explain medical information and prescriptions in ways that make sense and make people aware of their healthcare rights and their bodies.
Abbie, Boe Htoo, Nido and Zahir also work with staff within and across Bendigo Regional Cancer Centre to help build knowledge and understanding of patients who have lived as refugees. By providing insight into the health beliefs and preferences of former refugees, they’re supporting important changes in daily practice to build more refugee-sensitive health systems and processes.
“Everything about our health service, everything about our systems, everything about medication, pharmacies, scripts – it's all new,” says Abbie.
“There's a whole lot of assumptions that we make about people's ability to understand their bodies. We can't just put out a call to screen – that doesn't work. If you don't understand what's happening in your body and you don't believe cancer can be treated, why are you going to screen? Why would you want to know?”
There’s no word for cancer in Karen language. Nido describes it as the ‘nasty disease’.
Boe Htoo explains that back in the refugee camp, people would go up to the hospital and never come back. Seeing the same thing repeat here in Australia is reinforcing the belief that nothing can be done – that they’re prognosis is hopeless.
“We've had seven people with a cancer diagnosis that we've supported through the navigation component of the project, and we've only managed to get one to active treatment, the others have all been late stage,” says Abbie
“We've got one [at the time of writing] still that we're supporting who is terminal, but we've lost everybody else. So, for us in terms of trying to change that perspective for people, it's been really hard.”
Supporting Karen people
For the Karen people, knowing how to navigate the Victorian health system takes time, but Boe Htoo says there are ways healthcare workers can make it a little easier.
“To help my community, I would like the health worker to understand a bit of our background. Because some people are so quiet when they attend their healthcare service – they don’t want to ask or they worry the GP doesn’t have time to answer the question,” said Boe Htoo.
Abbie adds, “To me, it's about being active in your own treatment as well, because what we see a lot of the time is that things are just done to people, not with people. If you don't understand the information, you can't make the best decisions for you.”
The team works closely with Loddon Mallee Integrated Cancer Service based at Bendigo Hospital where Bendigo Health Karen Interpreters support those willing to come in for treatment.
One of those is Sei Sei who was born in the refugee camp and spent the first 20 years of her life there. Her lived experience and gentle nature are a calming influence for many Karen people navigating a healthcare system entirely new to them.
“I work across all the wards, not just cancer,” she says. “Filling out forms can be difficult for Karen people – when you’re essentially a stateless person, how do you fill out ‘country of birth’ details?”
Neither Thai nor Burmese, this is a problem for many former refugees whose country of birth is at odds with both ethnicity and lived experience – rendering their unique circumstances invisible on paper and in important health data. It’s only through an engaged health care system and community projects like the one through Bendigo Community Health Services that their experience and needs can come to light.
Cancer Council Victoria is now looking at a hepatitis B micro-elimination project targeting the Karen community to help prevent more cases of liver cancer. This is thanks to GPs making the vital connection and raising the alarm.
A sign of hope
Through co-designed community resources and compassionate advocacy, the Bendigo team is delicately shifting the narrative into the cancer treatment space.
“If we had tried to do that initially, people wouldn't have turned up to our sessions. We've had to go pretty slowly to build that confidence in prevention and screening to now look broadly at treatment,” says Abbie.
“People are so much more open to speaking about that and learning about it now. So, they realise that there are things that we can do to reduce our risk, including screening.”
New arrivals continue to settle in Bendigo, Boe Htoo, Nido, Zahir and the team are helping these former refugees transition into new lives – many now working in aged care, dental, nursing, and trades.
Their work brings richness to the city and hope to those who’ve known only instability. “It makes me feel good knowing people will use this information. One day, they’ll realise cancer isn’t something to fear. If you find it early, there are options,” says Nido.
Now, with one community member completing immunotherapy, there is renewed hope that his story will be the inspiration and encouragement the Karen community needs to see that cancer doesn't have to be a death sentence.
“Then they’ll understand, cancer can often be cured. We have amazing treatment here,” says Boe Htoo.