Study into asbestos-related disease shows need for community involvement

A new study into asbestos-related disease in the Latrobe Valley has found that many affected people feel angry and disappointed with the support they have received to date from the former State Electricity Commission (SEC), other branches of government, and the healthcare system.

More importantly, they have a first hand grasp of the issues, have valuable insights on finding ways forward, and want a say in future decision-making.

The study, titled “Work and Health in the Latrobe Valley: Community Perspectives on Asbestos Issues”, will be launched at a community meeting in Moe tomorrow (Thursday 23 September).

Conducted by researchers from the Centre for the Study of Health and Society at the University of Melbourne, the study was spurred by observation that the voices and perspectives of those most affected by asbestos disease are rarely heard in the formulation of responses to Australia’s on-going asbestos disease epidemic.

“The goal of the study was to determine how a community affected by asbestos disease defines asbestos disease issues, and what they think could or should be done about these issues” says VicHealth research fellow and co-author of the report Associate Professor Tony LaMontagne.

The setting for the study was the Latrobe Valley region of Victoria, which has the highest burden of asbestos disease in Victoria due to extensive use of asbestos in the past in the power industry. The study defined community as those most directly affected by asbestos disease (exposed and diseased former SEC workers and their families) and their advocates (2 local community-based asbestos support groups, and 2 trade unions that represented SEC workers). In-depth interviews were conducted by Hannah Walker from the Centre for the Study of Health and Society, who worked with Associate Professor LaMontagne on the study.

“Hannah noted early on that the influence of decades of suppressed knowledge about the health risks of asbestos was so strong that we ought to begin our findings with that,” says Associate Professor LaMontagne.

“In short, people’s accumulated anger and frustration with the historical denial of asbestos hazards and disease in the Valley continues to affect their feelings in the present and highlights the need for reconciliation on these issues as a starting point.”

Other themes to emerge from the interviews include the challenges of living with risk from past exposure (for those not yet affected by asbestos disease), the lack of adequate healthcare facilities in the region, and the extensive involvement of women in support and advocacy.

Associate Professor LaMontagne says that current responses to the asbestos-related epidemic facing Victorians are typically focused on disease and compensation management of individual cases, and that a broader community view was also needed.

“The reality is that the impacts of the disease are felt across the community, as for example when a community is left to support grieving and angry widows and children. This is a community issue, not just a healthcare issue, or a legal issue, or a union issue,” he says.

Associate Professor LaMontage says the community needs to have input into the decisions made about how to respond to this on-going crisis.

“Community members deserve a place at the table alongside government— in its role as both former employer (through the SEC) and current guarantor of the public’s health—and other stakeholders in the on-going formulation and implementation of responses. Thus far, the responses in the Valley and elsewhere are driven more by insurance concerns than public health considerations. This needs to be reversed.”

“Currently, decisions about how to respond to the epidemic—in Australia in general as well as in the Latrobe Valley in particular--are dominated by medical, scientific, and legal perspectives. While work in these areas is crucial and should continue, these efforts are largely focused on exposed and diseased individuals leaving effects on the broader community unaddressed. Social and community level responses need to be expanded, and we should start by listening to affected communities. They know the issues and have been developing responses at this level for some time.”

“The first principle of public health is that the people most affected by health problem need to be involved in defining the problem and finding ways forward, and I think that in dealing with asbestos disease we - that is, researchers in general, the healthcare system, and other branches of government - have fallen behind in that so far” says Associate Professor LaMontagne. “Here’s an opportunity where government rhetoric about ‘community involvement’ is crying out for application.”

“In summary, this study suggests that asbestos issues would be best addressed by a comprehensive public and social health response with genuine community participation. We are hopeful that this research goes some way toward stimulating action in this regard.”

Speakers at the report launch are:

• Latrobe City’s Cr Bruce Lougheed who will officially launch the report
• Associate Professor Anthony LaMontagne from the University of Melbourne, who is the principal researcher
• Vicki Hamilton, Secretary of Gippsland Asbestos Related Diseases Support (GARDS)
• Luke van der Meulen, Victorian President of the Construction Forestry Mining Energy Union (Mining & Energy division) (CFMEU)
• Steve Dodd, Organiser, Australian Manufacturing Workers’ Union (AMWU)

Copies of the report are available from the University of Melbourne Media Unit, or in PDF format on the website: http://mediapics.unidev.unimelb.edu.au/AsbestosReport.html