When Danielle Curnoe tells people she has lung cancer, she is frequently asked if she was a smoker.
"Really, really pisses me off when people ask that question," Ms Curnoe said.
Ms Curnoe has stage-four lung cancer, and has never smoked in her life.
But people assume she brought it on herself, she said.
"If I tell people, I tend to say I've got stage-four cancer, I don't say lung cancer," Ms Curnoe said.
"I know that it impacts how people think."
Ms Curnoe said the stigma added an extra layer of grief to the already devastating diagnosis of any type of stage-four cancer.
"On top of the grief, we constantly feel judged and that we have to explain ourselves," Ms Curnoe said.
New screening program proposed
Ms Curnoe is speaking out as the federal government considers whether to establish a national lung cancer screening program, following a proposal from the independent Medical Services Advisory Committee.
Under the proposal, people from 50 to 70 years of age with a history of smoking for at least 30 years, or who have quit in the last 10 years, would be eligible for a CT scan every two years.
However, people like Ms Curnoe would not be included under this scheme.
An inquiry into the scheme's proposal found that other criteria such as personal and occupational risk factors like second-hand smoke were important, but accounted for too small a proportion of lung cancer cases.
Health Minister Mark Butler said the government would respond to the proposal "in due course".
Ms Curnoe said everyone over 40 should be screened for lung cancer regardless of their smoking history.
"It's reinforcing the message that only smokers get lung cancer," Ms Curnoe said.
A lack of sympathy
Australians are "world champions" when it comes to stigmatising people with lung cancer, according to respiratory medicine professor Matthew Peters.
"We need to embrace lung cancer patients more empathetically than we have a history of doing," Dr Peters told ABC Radio Sydney presenter Cassie McCullagh.
A survey by the Lung Cancer Coalition found Australians were one of the least sympathetic nations towards people with lung cancer.
This attitude was fed by the Sponge ad campaign from the 1980s, Ms Curnoe said.
The ad showed a pair of lungs soaking up cigarette smoke before being wrung out into a glass.
Ms Curnoe compares the ads to the grim reaper ads during the AIDS epidemic.
"Those ads do for lung cancer what those ads did for AIDS," she said.
An over-represented group
Ms Curnoe is among a growing number of people who have lung cancer but have never smoked.
Women aged 30-45 were over-represented in the diagnosis of lung cancer, according to Lung Foundation CEO Mark Brooke. Mr Brooke said one in five lung cancer patients had never put a cigarette in their lips.
"Whether that's got to do with air pollution, genetics — we just simply don't know," Mr Brooke said.
"It's a very challenging and difficult diagnosis for particularly those one in five people that are never smokers."
Lung cancer has one of the lowest survival rates of all cancers, especially once the disease has progressed to stage four.
A study from the Australian Institute of Health and Welfare said the five-year survival rate for lung cancer at stage one was 68 per cent, while at stage four it was 3.2 per cent. The same study found 42 per cent of lung cancers were diagnosed at stage four.
More investment needed
Mr Brooke said the screening program was a positive step, but he would like to see more funding put into treatment, research and nurses.
"Lung disease as a category accounts for about 11 per cent of Australia's total health burden," he said.
"But between 2008, and 2018, as a percentage of total research investment it only got 2.4 per cent."
Mr Brooke said he hoped the screening program would be expanded to include people with a family history of lung cancer.
"If COVID has taught our community anything, it's that their lungs really matter," he said.
