It’s an exciting time to be working in cervical cancer research in Australia when our nation is poised to eliminate this disease in the next 10 years. Dr Claire Nightingale, a senior research fellow at the Melbourne School of Population and Global Health at the University of Melbourne, has worked in HIV, hepatitis and now cervical cancer research. These are all diseases that Australia is striving to eliminate.
The problem with eradicating these illnesses from the general population though, is that underrepresented sections of our community can sometimes become invisible. They can slip through the cracks. And whether it’s Aboriginal and Torres Strait Islander peoples, or culturally linguistic and diverse communities, or gender diverse groups, delivering equitable healthcare means no one should miss out on experiencing the health benefits of medical advances.
“Eliminating disease for the general population will often hide or mask things that are happening beneath the surface for other populations within Australia,” says Dr Nightingale, who is co-leading an NHMRC-funded research program, Supporting Choice, which aims to contribute to cervical cancer elimination.
“We saw the inequity with HIV and we're seeing it with cervical cancer.”
Dr Nightingale, whose career has spanned equitable delivery of healthcare in HIV, STIs and cervical cancer across Papua New Guinea, Myanmar and now Australia, explains that it is often the lack of effective monitoring and data collection that leads to gaps in our healthcare knowledge of who needs help.
“For populations who have been historically underserved, our monitoring systems haven’t always been effective at recording and telling us about these inequities,” she says. “It's hard to argue for funding when you can't prove there's a problem.”
But things are changing. There’s a momentum of work underway to improve data and monitoring in Australia, and more funding is becoming available for disease elimination strategies. This is partly due to the number of passionate scientists, researchers and politicians who advocate for equity, says Dr Nightingale.
Cervical cancer is one area that is benefiting. The Supporting Choice project is entirely focused on eliminating cervical cancer in an equitable way. The three-year project, currently in its second year, is ensuring that everyone with a cervix has the option, if they choose, to self-collect a cervical sample rather than undergo an internal examination and sample collection by the doctor. The program is working with doctors, nurses, and will be working with communities including the disability, LGBTQ+, culturally and linguistically diverse and refugee sectors to ensure the new approach to cervical screening will make a difference and is carried out in a way that is accessible and acceptable to diverse groups.
“Cervical cancer is a really exciting area to be in at the moment. It's the first cancer that we have the opportunity to eliminate as a public health problem.
“That's largely because we have a vaccine (for HPV). But we also have access in Australia to effective screening and better treatments.”
There is also good data – but some gaps. Seventy per cent of people with a cervix will screen in the recommended period of five years and 30 per cent won’t, and almost all cases of cervical cancer occur in people who don't screen, Dr Nightingale says. “That absolutely highlights the problem, and we need to find out who isn’t screening. We have data. Not national data, but data linkage studies by collaborator A/Prof Lisa Whop that show Aboriginal and Torres Strait Islander people have much higher rates of cervical cancer and lower rates of screening. Similar studies show some culturally and linguistically diverse populations have lower rates of screening. We don't know much about gender diverse people and their rates of screening. Anecdotally, we know people with a disability have lower rates of screening. So, there are populations who we know are not accessing the screening program and that's where our work comes in.
“We're really switching our thinking to be less about ‘how can we change people so that they access healthcare?’, to ‘how can we make healthcare systems more accessible to people?’”
We’re featuring Dr Claire Nightingale’s work as part of our World Cancer Day coverage which is tackling inequity in cancer care across Victoria. Register for our upcoming World Cancer Day Monday Lunch Livestream here.