WA Mesothelioma Register
In the mid-1970s doctors in Perth were seeing the human cost of the asbestos mining industry at Wittenoom in the north of Western Australia. As mine workers increasingly presented with asbestosis or the fatal cancer, mesothelioma, a senior chest physician at Sir Charles Gairdner Hospital, Janet Elder, began keeping a record of their details on a piece of butcher’s paper. That piece of paper was soon joined by several others, stretching across her office wall as cases multiplied.
As interest in the mesothelioma epidemic increased, Dr Elder’s makeshift record became the basis of one of Australia’s most comprehensive data linkage projects, the Western Australian Mesothelioma Register. Other states and territories began to follow WA’s lead and the Australian Mesothelioma Surveillance Program began on January 1, 1980.
What is the WA Meso Register?
The WA Mesoethelioma Register contains detailed records of all known cases of the disease in the state. While Dr Elder recorded names as well as medical, hospital and asbestos exposure details, the modern register has become an incredibly comprehensive database.
The register’s current research officer, Nola Olsen, documents incidence and mortality rates, prevalence and survival by age, sex, country of birth, geographic location and diagnostic periods as well as smoking habits and occupation.
“When I first took over as research officer in 1995 we had a very long questionnaire that we filled out for each person. It was incredibly detailed and included the person’s work history and every house they had lived in,” she says.
“We had 30 codes to document the type of (asbestos) exposure experienced, whether you were a Wittenoom worker, a handyman, the wife of a James Hardie factory worker or in the armed forces.”
How the information is used
The WA database reflects the needs of researchers as well as the demands of legislators, who conducted successive parliamentary inquiries into the use of asbestos in the 1980s and 1990s.
“Parliament needed to know how many people were affected by contact with asbestos and what their jobs were,” Mrs Olsen says. “What eventually came out of that evidence led to a total ban on the use of asbestos.”
In the 1980s asbestos victims were bringing compensation cases before the courts in WA and their lawyers, too, required information from the register. The pioneering data linkage project is now part of the WA Cancer Register, which is managed by Dr Tim Threlfall, a keen advocate of the importance of data linkage.
“Data linkage is about finding links between information and events,” Dr Threlfall says. “The Cancer Register creates, updates, enhances and manages these links.”
This kind of population-based surveillance is vital for effective planning, enabling health services providers and researchers to track the progress of a disease within a population. It also allows comparisons with other states and countries.
“It is not always easy to get information about a particular disease that allows you to see who it is affecting, where they live, whether it is in men or women and so on,” Dr Threlfall says. “And, importantly, the register allows an unbiased interpretation of the facts.”
The incidence of mesothelioma is documented more thoroughly than any other cancer on the register. According to Dr Threlfall, “This is because its occurrence has a huge relationship to a single factor – asbestos. It’s also a relatively rare cancer so it has been easier to document each case in detail.”
The Wittenoom legacy
According to Nola Olsen, in WA about 90 people a year are diagnosed with mesothelioma, some of them victims of the Wittenoom legacy.
“Although the mine closed in 1966, we still get people from Wittenoom,” she says.
“There are people aged in their seventies and eighties who lived there. We have terribly tragic circumstances where the parents don’t get mesothelioma, but their children – now in their forties and fifties – do. It is devastating.”
Documenting ‘the third wave’ of asbestos victims
In her thirteenth year as the register’s research officer, Nola Olsen is now documenting the “third wave” of mesothelioma victims.
“The first wave were Wittenoom workers and wharf workers at Point Samson and Fremantle. The second wave were people who used the processed asbestos and they included carpenters, painters and electricians, boilermakers and people who worked at the railways. The third wave are the people who are being diagnosed now, and that includes white collar workers. They are the people who have had no occupational exposure but may say to us, ‘I enclosed the back verandah and we lined it with asbestos’, or ‘We built a new laundry using asbestos’.”
And Nola Olsen adds that it isn’t just working men who are presenting with asbestos-related disease: “We also take account of the women – wives or mothers perhaps who swept up after home renovation work or helped out with the work. We are seeing a lot more women coming into that handyman exposure category. It is almost up to fifty-fifty. In other groups, the incidence of mesothelioma in women is down at ten per cent.”
The WA Mesothelioma Register and medical research
Increasingly, the register is in demand for clinical trials research.
“The register allows researchers to track survival times so you can see how effective a treatment has been. This is particularly important for drug and treatment trials that are trying to extend life,” Mrs Olsen says.
“It is important that people are looking at the data consistently and continually to see if patterns emerge.”
For details on some of the findings to emerge from the WA study click here.