As a disease that is incurable and deadly, mesothelioma is rarely a good news story, but two initiatives originating out of Perth offer some optimism.
By Cathy O’Leary
For 60 years, every case of mesothelioma – the rare and aggressive cancer caused by exposure to asbestos – has been dutifully recorded in a WA database, dating back to the start of the epidemic in the 1960s.
Initially, the high-risk group was the workers who mined asbestos in the Wittenoom Gorge, but they were soon followed by a second wave of cases in people such as carpenters who had used asbestos as part of their trade.
And while the painful legacy of the first two waves has largely shown its hand, it has been the next wave – in budding do-it-yourself home renovators – that has worried respiratory specialists in recent years.
While asbestos was banned in Australia in 2003, there have been concerns about the sheer numbers of people doing DIY projects around their home who might come into contact with asbestos – already or in the future.
But there are optimistic signs that the third wave has also turned the corner, with figures from WA’s Mesothelioma Registry suggesting cases have reached a plateau – potentially putting a dent in the feared explosion of cases linked to home renovations.
And the promising sign has coincided with the launch of a new industry-backed resource and support network in WA to better help people living with the terminal disease.
Mesothelioma invariably has a poor prognosis. It is an incurable, universally fatal disease, predominantly of the pleural and peritoneal mesothelium, and primarily caused by exposure to asbestos fibres.
Global asbestos use peaked in the last century, but despite a ban on asbestos import and use in more than 60 countries, it is estimated that more than a million tonnes of asbestos was exported to predominantly developing countries in 2019.
Dark history
In the early days of its use in Australia, asbestos itself was considered innocuous, with young children even playing in its dusty tailings.
Across developed countries, the first wave of the mesothelioma was caused by exposure to raw fibres from the mining, milling and handling of asbestos. Australia imported and mined asbestos, including chrysotile in New South Wales and crocidolite in WA.
Between 1937 and 1966, about 150,000 tonnes of crocidolite was mined from the Wittenoom region, the town of which was established for miners and their families and was only completely closed in 2022.
The second wave of mesothelioma was caused by workers who used asbestos-containing products in industry, typically construction, boiler workers, carpenters, railways and dockyard workers. After a partial ban on asbestos-containing products in Australia in 1984, there were significant concerns about people being diagnosed with mesothelioma after short-term or low-level exposure to residual asbestos in the built environment at home or at work.
In Australia, 700 to 800 people are now diagnosed with mesothelioma each year, and the WA registry tracks all cases in this State – both work-related and non-occupational.
The latest review of cases, recently published in the journal Respirology, was done by researchers Fraser Brims, Chellan Kumarasamy, Lalitha Menon, Nola Olsen, Nick de Klerk and Peter Franklin.
Writing in the journal, they said that while Australia introduced a partial ban on asbestos use in the 1980s, there had been continuing concern about exposure to asbestos in the built environment and non-occupational exposures.
The aim of their study was to look at epidemiological trends in the 60 years since the first case was recorded, and they believed it to be the longest-running mesothelioma cohort study in literature.
Overall, it identified 2796 cases, with males making up 85% of cases, with a median age at diagnosis of 70, a latency of 47 years on average and a median survival of 298 days.
Women and DIY
There were strong gender differences related to the source of the exposure.
As expected for a predominantly occupational disease, about 85% of cases were in males, but the proportion of females with a non-occupational source of exposure was much higher, with one in five females having DIY exposure, compared to one in 20 males.
This was likely to reflect historical, social and work-related factors, and highlighted that other household members could be affected by DIY exposure.
A previous report using data from the WA registry had warned of a rising number of mesothelioma cases attributed to home renovation and DIY projects.
But the new study found that the annual number of cases of mesothelioma may have hit a plateau at around 100.
“While the absolute numbers of Wittenoom workers developing mesothelioma has not changed much since the 1980s, there has been a steady fall as a proportion of all cases since this time,” the study found.
“There has been significant concern about the third wave of exposure from DIY home renovation and the data in the present study demonstrate that both the proportion of DIY cases has not risen in the last decade and, the incident rate ratio for DIY cases has fallen.
“This provides some of the first evidence that the asbestos ban in Australian enacted in 1984 may have been successful in reducing exposure to the wider community.”
One of the researchers, Professor Fraser Brims from Curtin Medical School, told Medical Forum that when his group looked at this issue back in about 2010, it showed a potentially worrying increase in the number of people exposed as part of the DIY renovations.
“The wider Australian data suggests we might be reaching a plateau in terms of the number of cases, so we wanted to look at that from a WA point of view as well,” he said. “And our study has shown that, yes, in WA we probably are reaching a plateau, and certainly the number of cases in the past five years has been hovering around 100.”
Professor Brims said that, importantly, one of the key headline messages was that the number of people exposed because of DIY renovations seemed to have dropped off.
“We’ve only found three cases that have been exposed after 1984, which is when the initial partial ban came in,” he said.
“It is evidence that the number of cases is slowing, but I think at the same time we’re going to have a very long tail, because more than 40% of all the asbestos we used in Australia is still in our built environment.
“So, the legacy lives on, and the risk and the need for people doing DIY, even if it’s in their own house and they’re just knocking down a wall or the odd chicken coop, means they need to think first about what they’re about to knock down or drill through.”
Professor Brims cautioned that DIY exposure remained an ongoing concern, but there needed to be a nuanced conversation about the actual risk.
“When you look at how busy hardware shops are on a weekend, all those people, and with two-thirds of houses built between 1950 and 1980 having asbestos and all those renovations going on, it’s a huge population out there,” he said.
“But in fairness, some of them will have very minor exposure, and that’s the key thing, which is relevant will all the issues going on with contaminated garden mulch over east. The likelihood of developing mesothelioma and indeed any other asbestos-related disease is entirely related to how much you’re exposed to.
“We hear in the media about the really awful (mesothelioma) cases, which are very rare, but it does highlight the very important public health message that any exposure is potentially dangerous, but your risk from one exposure is very unlikely to cause you disease.”
Professor Brims said that if the current trend continued, he would expect to see the cases to continue to level off.
“But in years to come, all the tradies and people who worked with asbestos exposed in the 1960s, ’70s and ’80s are going to die off, and not necessarily from mesothelioma, so as a proportion of cases, those exposed through DIY are probably going to increase because that’s still going on now.”
New WA resource
Professor Brims welcomed the recent efforts of the WA organisation Reflections, of which he is an ambassador. In February this year, it launched a ground-breaking support resource, The Hope Companion, aimed at people with mesothelioma, their carers and health professionals.
Reflections is a not-for-profit organisation that was inspired by the journey of Perth man Barry Knowles and others who fought long battles before losing their lives to the insidious disease.
One of the main driving forces behind the new resource is Barry’s daughter, Jo Morris, who was surprised by the dearth of support and information for those affected by mesothelioma when her dad was ill.
“Mesothelioma is a lonely cancer, and Mum and Dad struggled to find the care and support they needed, and access to relevant, accurate information was hard,” she said at the time of the launch.
The resource combines lived experience with medical information, offering support for patients and caregivers. With practical tips, checklists, and space for reflection, it is designed to bring hope after a life-changing diagnosis.
It includes insights from medical, legal and nursing professionals, and covers how the disease is diagnosed and progresses, guidance on living well with mesothelioma, a healthcare management booklet, help for caregivers, end-of-life planning advice and support for moving forward after loss.
A general guide is backed up by a hard-copy medical booklet which patients can use to track their appointments and medications and log their pain and symptoms.
Professor Anna Nowak, a mesothelioma researcher and Deputy Vice-Chancellor in Research at the University of WA, said it was an invaluable resource for people impacted by a devastating disease.
“Every page combines empathy, common-sense and lived experience with trustworthy medical information,” she said.
Thoracic oncology nurse coordinator Kirsten Stewart said it offered practical and emotional support to both patients and partners through regular contact via phone or support group.
“I know patients find the support invaluable as they’re able to discuss thoughts and feelings with others who are walking the same journey as themselves,” she said.
Doctors, including medical oncologist Dr Melvin Chin and lung specialist Professor Bruce Robinson, have also welcomed the resource to help patients navigate their mesothelioma care.
Professor Brims said Australia still had one of the highest rates of mesothelioma in the world and relentless asbestos use continued in many countries, so asbestos disease was not going away anytime soon.
“We still have a responsibility to our region to address the catastrophic impact of asbestos use,” he said.
The Hope Companion can be accessed by contacting Reflections on 1800 031 731, email support@reflections.org.au or the website www.reflections.org.au