2013 annual report Table of contents Who we are 4 ADRF chair’s report 11 What we do 4 Director’s report 12-13 Key statistics 5-7 ADRF Board 14-16 2013 highlights 8-9 Our staff 18-25 Organisation 10 Our research 26-30 2 Australian Mesothelioma Registry 32 Publications and presentations 39 Prevention through Education 33 Visitors 43 Research support 34 Supports 44-45 Non-peer-reviewed support 36-37 2013 Supporters 46-47 Collaborations 38 In memory of 47 Our mission The Asbestos Diseases Research Institute aims to improve the diagnosis and treatment of asbestos-related diseases and at the same time to contribute to more effective measures to prevent exposure to asbestos. 3 Who we are The Asbestos Diseases Research Institute (ADRI) is the first stand-alone research institute tackling the still increasing epidemic of asbestos-related diseases The ADRI was established by the Asbestos Diseases Research Foundation (ADRF), a charitable, not-for-profit organisation The ADRI is located in the ADRF’s Bernie Banton Centre on the Concord Hospital campus which was officially opened in January 2009 by the then Prime Minister, the Hon Kevin Rudd What we do The ADRI’s primary objective is to make asbestos-related disease history, and to provide a better future for all those Australians unfortunately exposed to asbestos 4 Key statistics Malignant mesothelioma the Registry contains data for people newly di- in Australia agnosed with malignant mesothelioma from Measuring rates of malignant mesothe- January 2011 to December 2012. A strength lioma is an important way to assess the of the Australian Mesothelioma Registry is overall burden of asbestos-related disease in that asbestos exposure is able to be collected.” Australia. This is because there is a strong causal association between asbestos exposure Number of people with newly di- and malignant mesothelioma, high-quality agnosed malignant mesothelioma, data at the population level are available to 1982-2009 and 2011-2012 measure mesothelioma incidence, mortality The total number of people with newly di- and survival, and these data can be monitored agnosed malignant mesothelioma from 1982 over time. to 2009 was 11,667,1 with men making up Data on the number of people 85% of all incident cases. Since with newly diagnosed malignant 11,667 2003, approximately 600 cases mesothelioma (incidence) and the Number of people of newly diagnosed malignant number of deaths from malig- with newly diagnosed mesothelioma cases have been nant mesothelioma (mortality) is malignant mesothelioma, reported each year. Data on the available at the national and state- 1982-2009 and 2011-2012 number of people with newly and territory-levels in Australia. diagnosed malignant mesothe- From these data, it is possible to lioma in 2010 are currently not estimate the rate in the Austral- 6,492 available. ian population of mesothelioma Number of people who A total of 619 people from 1 incidence and mortality, most died from malignant January 2012 to 31 December often expressed as the rate of inci- mesothelioma, 1997-2009 2012 were newly diagnosed dent cases or deaths per 100,000 with malignant mesothelioma people, per year. in Australia. People newly diag- Two sets of national data can 639 nosed in 2012 were more likely be used to count the number People were newly to have pleural mesothelioma of people newly diagnosed with diagnosed with malignant (94%), be male (79%), and be malignant mesothelioma and mesothelioma in 2011 70 years of age or older (62%). the number of people who have In 2011, 639 people were newly died from malignant mesothe- diagnosed with malignant lioma. The Australian Cancer 606 mesothelioma bringing the Database contains information People died from total for 2011-2012 to 1,258. about each new case of mesothe- malignant mesothelioma These numbers were based on lioma reported in each state and in 2011 data from the Australian Meso- territory between 1982 and 2009. thelioma Registry as at 30 June Complete data on the number of 2013.2 deaths from mesothelioma are 44% also available from 1997 to 2009, The probability of Number of people who with provisional data available for surviving up to one year died from malignant 2010 and 2011. after the diagnosis of mesothelioma, 1997- Information about more recent malignant mesothelioma 2009 cases of mesothelioma is available A total of 6,492 people were from the Australian Mesotheli- recorded as having died from oma Registry. The Registry was 6% malignant mesothelioma from established in July 2010 making Estimate of the probability 1997 to 2009 (Figure 1).1 In it difficult to count the new cases of surviving five years 2009, 584 people died from of mesothelioma that occurred after a malignant malignant mesothelioma. Data over that whole year. However, mesothelioma diagnosis reported by the Australian 5 800 3.5 Age-standardised 700 3.0 incidence rate per 100,000 600 Number of newly diagnosed 2.5 500 mesothelioma cases 2.0 400 Age-standardised 1.5 mortality rate Number of 300 per 100,000 mesothelioma 1.0 200 deaths 0.5 100 0 0 1982 1996 2009 1982 1996 2009 Figure 1: Number of people with newly Figure 2: Malignant mesothelioma age- diagnosed malignant mesothelioma (1982- standardised incidence (1982-2009) and 2009) and the number of deaths due to mortality (1997-2009) rates, Australia, malignant mesothelioma (1997-2009), calculated using the Australian Standard Australia Population 2001 Institute of Health and Welfare up to 2009 territories, 4.3 per 100,000, reflecting the pre- is final. Data are also available for 2010 and viously high-levels of asbestos consumption 2011 (634 and 606 deaths respectively)1, but in that state. these figures are subject to revision as more The age-standardised incidence rate was up-to-date mortality data are received. 1.2 per 100,000 in 1982 and 2.8 per 100,000 in 2009, with the increase in the rate over Age-standardised incidence rates, time being greater in the 1980s and 1990s 1982-2009 and 2011-2012 (Figure 2). The age-standardised malignant meso- thelioma incidence rate in 2012 was 2.4 per Age-standardised 100,000.2 This incidence rate applies equally mortality rate across males and females and across all states The age-standardised malignant mes- and territories. When broken down by sex, othelioma mortality rate in 2009 was 2.5 the age-standardised incidence rate for men per 100,000, with a rate of 2.3 per 100,000 was 4.3 per 100,000 and 0.8 per 100,000 for in 1997 suggesting little change over time women. in age-standardised mortality rates. The There was also variation in the age-stand- age-standardised mortality rates were sim- ardised incidence rate by jurisdiction. West- ilar to the age-standardised incidence rates ern Australia had a higher age-standardised reflecting the aggressive nature of disease incidence rate compared to other states and progression. References 1 Safe Work Australia 2013 Mesothelioma in Australia: Incidence 1982 to 2009, Mortality 1997 to 2011 Canberra: Safe Work Australia 2 Australian Mesothelioma Registry 2013 2nd Annual Report Mesothelioma in Australia 2012 New South Wales: Cancer Institute NSW 3 Australian Institute of Health and Welfare (AIHW) 2012 Cancer survival and prevalence in Australia: period estimates from 6 1982 to 2010 Cancer Series no 69 Cat No CAN65 Canberra: AIHW Testicular cancer Thyroid cancer Lip cancer Prostate cancer Melanoma Breast cancer Hodgkin lymphoma Uterine cancer Chronic lymphocytic leukaemia Cervical cancer Kidney cancer Non-Hodgkin lymphoma Bowel cancer Laryngeal cancer Tongue cancer Bladder cancer Myeloma Ovarian cancer Stomach cancer Acute myeloid leukaemia Brain cancer Gallbladder and bile duct cancer Liver cancer Oesophageal cancer Unknown primary cancer 5-year relative survival for mesothelioma: Lung cancer 0 06 (95% confidence limits 0 05, 0 07) Mesothelioma Pancreatic cancer 0.0 0.2 0.4 0.6 0.8 1.0 Figure 3: 5-year relative survival for people diagnosed with cancer, Australia, 2006-2010 Relative survival malignant mesothelioma. These data can Compared to other cancers, people assist in determining any shifts in the sources diagnosed with malignant mesothelioma of exposure to asbestos or other carcinogens. are considered to have a poor prognosis with Complete asbestos exposure data from a 5-year relative survival of less than 0.10 229 people with newly diagnosed malignant (Figure 3).3 Relative survival is a commonly mesothelioma, recorded on the Australian used — at the population level — to measure Mesothelioma Registry, was available as at 30 the probability of survival following a cancer June 2013.2 ‘Possible’ or ‘probable’ asbestos diagnosis where non-cancer deaths have been exposure in occupational settings was found accounted for. The probability of surviving up in 144 people. An additional 80 people to 1-year following a malignant mesothelioma were identified who had no indication of diagnosis in 2006-2010 was 44% (1-year occupational exposure to asbestos. From this relative survival of 0.44). However, the group, 70 people had ‘possible’ or ‘probable’ probability of surviving up to 5-years after exposure to asbestos in non-occupational a malignant mesothelioma diagnosis was settings. Fifteen people were identified as estimated to be 6% (5-year relative survival of having no occupational or non-occupational 0.06). There have been incremental changes exposure to asbestos above background in 1-year relative survival in Australia, but exposure levels. little change in longer-term 5-year relative Ongoing collection and monitoring of survival. asbestos exposure in people with newly diagnosed malignant mesothelioma is Asbestos exposure important in understanding how Australia One of the objectives of the recently should best respond to the current and future established Australian Mesothelioma Registry burden of asbestos-related disease, including is to document asbestos or carcinogenic asbestos exposure in non-occupational exposures for people with newly diagnosed settings.