The ‘benefits of research on improving [human] outcomes are undisputed.’[i]
Our prior reports discuss the human and societal burdens arising from the prior asbestos-related activities of James Hardie Industries Ltd “James Hardie” and CSR Ltd “CSR” in Australia. Among the societal harms discussed, one of the categories highlighted was the costs of research to find a cure or treatments for asbestos-related diseases.
This paper delves deeper and reviews the levels of funding provided by James Hardie, CSR, the federal and state governments, cancer bodies and others for research of asbestos-related diseases.
Such funding is scarce, so we consider factors that may explain the disproportionately low contributions. We ultimately plead for greater resources and research efforts to ensure future sufferers of mesothelioma, asbestosis, and asbestos-related lung cancer are given hope.
Our researchers found no scholarly material on research funding of asbestos-related diseases in Australia. Moreover, official data on the funding of these diseases is incomplete and opaque. The amount of private and public funding for research of asbestosis is unknown. Available evidence suggests funding for research on asbestos-related lung cancer and mesothelioma is very limited and disproportionately low for the burdens suffered (known in medical circles as DALYs).[ii]
As highlighted in our prior reports, the only contributions that have been made by James Hardie or CSR for research of asbestos-related diseases (that we are aware of) is a commitment from James Hardie in the Asbestos Injuries Compensation Agreement to contribute $500,000 per annum over ten years to asbestos-related disease research.[iii]
A formal review by Cancer Australia of public funding to support cancer research found that for the period 2006 to 2011, the proportional funding for the combined lung cancer and mesothelioma category compared to incidence, burden of disease and mortality in the Australian population was very low.[iv] Similarly, during 2016-2018, the ratio of research funding to the burden of disease was lowest for lung cancer and mesothelioma combined.[v]
Australian health bodies well understand that mesothelioma is not the same as lung cancer. Nonetheless, Cancer Australia presently includes funding for mesothelioma research within the lung cancer data.[vi] The reason given to us for combining these funding statistics is to fit with international datasets.[vii] Our request for the funding splits was disregarded.
More recently, a platform established by Cancer Australia called National Cancer Control Indicators excludes mesothelioma from the list of cancers highlighted, asbestos is not mentioned as a risk factor for any form of cancer, and pancreatic cancer is listed as having the lowest survival rate.[viii] The bases for the selection of the cancers and risk factors included on this website are unclear.
To its credit, Cancer Australia has established a webpage on mesothelioma.[ix] This webpage includes tables of comparative incidences and comparative deaths by cancer type (including mesothelioma), but excludes a table of the comparative survival rates. To fill this gap, we have compiled a table of the 5-year survival rates for the cancers recorded by the Australian Institute of Health and Welfare, and this is attached as an appendix. This table highlights mesothelioma as the outlier with the lowest 5-year survival rate. Lung cancer is marginally better, but is still the form of cancer with the third lowest 5-year survival rate.
Our researchers were unable to find evidence on specific levels of government and other funding for cancer research by cancer type. Instead, the Cancer Council Australia submission indicates that the largest funding shares were awarded to breast cancer (accounting for 26 percent of funding and 7 percent of all cancer deaths), colorectal cancer (14 percent of funding with 9 percent of cancer deaths) and prostate cancer (13 percent of funding and 9 percent of deaths). Notably, lung cancer received only 5 percent of total funding, despite accounting for nearly 19 percent of the corresponding deaths.[x]
No data was found on the amount or share of funding for mesothelioma research in Australia, but private discussions suggest these levels have been, and remain, extremely low. The present federal government recently approved two immunotherapy drugs for mesothelioma sufferers on the Pharmaceutical Benefits Scheme.[xi] This step is commendable and welcome, but seems wholly insufficient given the scale of deaths from this disease and the record low survival rates.
A submission by Cancer Council Australia to a Senate inquiry concerning funding for research into cancers with low survival rates highlights the likely relationship between improvements in five-year survival rates and levels of direct research funding.[xii]
The Lung Foundation of Australia website emphasises this linkage and calls for greater funding of lung cancer research on the grounds that the ‘benefits of research on improving outcomes are undisputed.’[xiii] This linkage between research funding and improved health prognoses is even more compelling with respect to funding for mesothelioma research, given its record low 5-year survival rate and the minimal improvement in this rate over the last 30 years.
Some medical professionals suggest there is no point in spending money on mesothelioma research because sufferers die so quickly.[xiv] We suggest these views require a complete change in mindset. Imagine if the same views had been adopted with respect to AIDs, COVID 19 or other fatal or potentially fatal diseases that are now curable or manageable.
Possible Factors to Explain the Disproportionately Low Research Funding Levels of Asbestos-Related Diseases
The Cancer Council Australia submission notes that cancer patients from socioeconomically disadvantaged backgrounds have been found to have poorer outcomes for many types of cancer.[xv] This point is highly relevant for asbestos-related disease patients because the first two waves of asbestos related diseases include many working-class families.
The low levels of research funding for asbestos related diseases are further adversely impacted by personal responsibility concerns. Medical studies confirm that lung cancer is associated with greater stigma issues[xvi] than other types of cancer,[xvii] and is commonly viewed by the public as self-inflicted and preventable because of its link with smoking.[xviii] Notably, these stigma issues, the personal responsibility attributions, and the resulting adverse impacts on research contributions apply equally to those with lung cancer who have never smoked.[xix]
While not demonstrated in medical studies, our research and experiences suggest the stigma, personal responsibility and research funding concerns that apply to lung cancer may extend to asbestosis and mesothelioma. Comments and responses that we have received or heard about when discussing these diseases include the following:
- What is mesothelioma?
- What is asbestosis?
- Are you a smoker?
- It is cancer so there must be many risk factors?
- But isn’t it a working-class disease for old men?
- But the risks of harmful exposure are so low.
- But I have been exposed to lots of asbestos and I am ok.
- But you must have known about the risks of asbestos exposure?
- It is cancer so why should you get compensation when we cannot?
- But the asbestos story is old news.
- Isn’t silicosis a much bigger issue now?
- Are you still alive? That is a miracle.
- You are lucky to be alive so why are you whining?
- Silence … (that is, we don’t want to discuss it).
These responses are perhaps unsurprising, given the lack of basic knowledge across the population about the risks and impacts of asbestos exposure.
Our household survey found that two thirds of Australians do not know what asbestos is or cannot positively identify it as dangerous to health. Even among the better-informed households, most believe that fatalities from asbestos-related diseases are less than 50 a year. Hence, very few Australians (including medical practitioners) are well informed about mesothelioma, asbestosis, and asbestos-related lung cancer.
There is a high degree of institutional shame associated with the asbestos history in Australia. As discussed in our prior reports, sales of asbestos containing materials were permitted by public health bodies and policy makers to continue for many decades after the medical fraternity had clearly demonstrated the lethal nature of this carcinogen. The “powers that be” have not yet acknowledged this fact, or the continuing risks of legacy asbestos and associated mass deaths. Instead, many perhaps hope that the fatalities from asbestos-related diseases will fade away without the need to invest in research to find a cure or extend the lives of sufferers. Such views are poorly informed. There is no evidence of reducing deaths from mesothelioma; quite to the contrary. Cancer Australia estimates that the number of diagnoses of mesothelioma in 2020 reached a record level of 834, and based on present treatments, these diagnoses will become fatalities in the near term.[xx]
Finally, the history of asbestos and the documented experiences of researchers and scientists working on asbestos-related diseases suggest there are substantive external pressures on persons who elect to specialise or focus on this area of health.
Our researchers were surprised initially at the limited nature and scale of research on asbestos-related diseases, the disproportionately low funding for such research, and the lack of substantive debate and voices advocating on behalf of victims of asbestos-related diseases within public forums in Australia. We subsequently realised that the price paid by people who speak out on asbestos concerns can be high and may include the end or stalling of a career, discrediting of their reputations, loss of funding or access to potential funding, and even death threats. As such, the opportunities for researchers, scientists, and others to focus on or speak out about asbestos concerns in Australia can be severely limited by professional, career, and personal concerns, and or the possibility of losing existing or future funding.
For example, some of the most renown pioneers of asbestos-disease research were influenced, captured, or intimidated by the industry, including Richard Doll and Christopher Wagner. As highlighted in our history of asbestos paper, Doll published a seminal paper in the 1950s on the linkages between exposure to asbestos and lung cancer. However, post the 1950s, he carefully avoided any criticism of the asbestos industry. Indeed, Doll suggested publicly that the industry was behaving responsibly, he acted as a litigation consultant for Turner and Newall (a large asbestos producer in the United Kingdom), and he claimed that there were safe levels of exposure to asbestos.[xxi] In 1985, Doll even published on the ‘unjustified threats of prosecution to which industrial companies are increasingly subject’.[xxii] His transparency was later questioned when evidence became available revealing that his academic colleague had received a large donation from Turner and Newall and he had received a longstanding and secret retainer from Monsanto, a large chemical conglomerate.[xxiii]
Similarly, after publishing ground-breaking research on mesothelioma in the 1960s, Wagner altered his published views and scientific position radically. In the 1990s, he gave expert witness evidence that mesothelioma is always related to exposure dosages and that chrysotile asbestos is safe regardless of the level of exposure. He further argued that chrysolite fibres could be rendered safe by commercial treatments.[xxiv] These claims were influential and assisted the asbestos industry when it sought to resist changes in regulation and workplace practices.
In a court case in 2000, evidence was submitted of payments received by Wagner from Owens-Illinois (a large user of asbestos) over more than 15 years. These payments were never disclosed in Wagner’s publications or in his court proceedings as an expert witness.[xxv]
On his deathbed, Wagner confirmed in an interview with Jock McCulloch that his work as a researcher on asbestos-related diseases had been hindered by the industry from the mid-1950s, that he had been forced to leave South Africa following death threats, and that he regretted having ever entered this research arena.[xxvi]
Other scholars highlight examples of asbestos related medical publications and research that were criticised heavily when it transpired that the authors had not disclosed the receipt of industry funding in the form of research grants, consultancies, employment positions and witness fees.[xxvii]
James Huff concludes that the science of occupational and environmental medicine, toxicology and epidemiology will remain unsatisfactory while much of it is ‘funded and manipulated by industry sponsors and published in journals that do not require disclosure of conflicts of interests.’[xxviii]
For example, we found no peer-reviewed articles in Australia from any discipline that detail the long-term human and societal harms resulting from legacy asbestos, the associated research developments, the responses by the industry and the federal and state governments to asbestos fatalities and ongoing risks, or the legal or public health settings governing legacy asbestos in homes.[xxix] One would expect to find policy debate within the legal literature, but instead, the discussion is largely restricted to compensation issues.[xxx] These findings are unlikely to be mere coincidence.
Further, it is likely that research funding for asbestos science (and the ongoing scientific debates) are still compromised by industry funding, influence and capture, as well as other financial and political motivations. Huff suggests that:
Traditional covert influence on occupational and environmental health (OEH) policies has turned brazenly overt. More than ever before the OEH community is witnessing the perverse influence and increasing control by industry interests.[xxxi]
Our research suggests the numbers of senior scholars, researchers, specialists, and public health and environmental health experts in Australia focusing on asbestos-related diseases and asbestos-related policy are small.
Without changes to this scenario, the future for sufferers of asbestos-related diseases looks grim.
Asbestosis and mesothelioma are not associated with smoking or other personal responsibility issues. Quite to the contrary. Most, if not all, sufferers of these diseases were not properly informed about, the risks they faced and were not able or advised to take precautionary measures. These are manmade or corporate induced diseases that were, and remain, preventable by avoiding exposure to asbestos fibres and dust.[xxxii] Both these diseases have dire prognoses.
Many of the deaths from asbestos-related diseases in Australia are from lung cancer, with an estimated 3,000 of these fatalities involving asbestos exposure.[xxxiii] While smoking is a primary risk factor for lung cancer, asbestos exposure increases the risks for smokers exponentially and some people diagnosed with lung cancer have never smoked. We are not aware of Australian based research on the linkages between asbestos exposure and lung cancer, so this area deserves greater research attention.
Private funding provided by James Hardie and CSR for research of asbestos-related diseases appears to be scarce. Data from Cancer Australia also points to disproportionately low levels of public funding for lung cancer and mesothelioma research given the burdens suffered. Mesothelioma research, in particular, appears to have been treated as a low (if not the lowest) priority form of cancer, and has been given minimal consideration and funding by cancer bodies and governments.
Summary reasons for the low amounts of funding provided for research on asbestos-related diseases are likely explained, at least in part, by:
- The working-class backgrounds of many patient cohorts.
- The stigma linked to diseases of the lung.
- The public’s poor understanding of the risks and consequences of the asbestos crisis.
- The shame associated with the history of asbestos in Australia.
- The continued reputational, commercial, and political pressures on researchers.
The general linkages between the levels of research funding on a disease and improved outcomes for sufferers are well acknowledged. Given the minimal funding for research of mesothelioma, the bare improvements in the survival rates of this disease over the last 30 years are unsurprising. Without committed and ongoing research funding, researchers are unlikely to focus on this disease, and novel but riskier research ideas to find a cure (or at least to make mesothelioma a chronic rather than a fatal disease) are unlikely to proceed.
Greater research funding from James Hardie and CSR, federal and state governments, cancer bodies, and other contributors for asbestos-related diseases is called for and appropriate, given the:
- Large number of deaths from lung cancer, asbestosis, and mesothelioma in Australia each year.
- The dire prognoses of these diseases.
- The absence or limitations of existing treatments.
- The involuntary nature of exposure to asbestos.
Asbestos Awareness Australia Ltd is a registered not-for-profit company limited by guarantee, is a registered charity, and has endorsement from the Australian Taxation Office as a gift deductible recipient. The company was set up:
- To promote and enhance public awareness and knowledge of the dangers and consequences of asbestos exposure in Australia.
- To advocate for legal and social reforms that prevent or minimise the harms from asbestos related disease in Australia.
- To promote actions that prevent or minimise the harms from asbestos related disease in Australia.
To achieve these objectives, the company provides public access to widely sourced information on asbestos risks and impacts, including the associated medical, legal, and political debates.
[i] Lung Foundation Australia, ‘Lung Cancer Research’ at https://lungfoundation.com.au/research/our-research/lung-cancer/.
[ii] For a description of DALYS (the disability adjusted life years), see Australian Government, Australian Institute of Health and Welfare, ‘Cancer in Australia 2019’ (Cancer 18 Series no 119. Cat no CAN 123, Canberra: AIHW) 8.
[iii] James Hardie Compensation Agreement .
[iv] See Cancer Australia, ‘Cancer Research in Australia: An Overview of Funding Initiatives to Support Cancer Research Capacity in Australia 2006 to 2011’ 14, 128, 130, 133.
[v] Cancer Australia, ‘Cancer Research in Australia 2016 to 2018: Opportunities for Strategic Investment’
[vi] Cancer Australia, ‘Cancer Research in Australia: An Overview of Funding Initiatives to Support Cancer Research Capacity in Australia 2006 to 2011’ available at https://canceraustralia.gov.au/publications-and-resources/cancer-australia-publications/cancer-research-australia-overview-funding-initiatives-support-cancer-research-capacity-australia-0. Cancer Australia is a federal body that makes strategic recommendations about cancer policy and priorities and seeks to address disparities and improve outcomes for people affected by cancer.
[vii] The rationales for merging the data at a global level are unclear.
[x] Cancer Council Australia & the Clinical Oncology Society of Australia, ‘Submission to Senate Inquiry into Funding for Research into Cancers with Low Survival Rates’ (March 2017) 11. These statistics are sourced from the Australian Institute of Health and Welfare and relate to deaths and funding for the period 2009-2011.
[xi] Tahlia Roy, ‘Mesothelioma Treatment Opdivo and Yervoy’s PBS Listing Brings Hope to Hundreds’ abconline 23 June 2021.
[xii] Cancer Council Australia & the Clinical Oncology Society of Australia, ‘Submission to Senate Inquiry into Funding for Research into Cancers with Low Survival Rates’ (March 2017) 11.
[xiii] Lung Foundation Australia, ‘Lung Cancer Research’ at https://lungfoundation.com.au/research/our-research/lung-cancer/.
[xiv] These persons do not want to go on record.
[xv] Cancer Council Australia & the Clinical Oncology Society of Australia, ‘Submission to Senate Inquiry into Funding for Research into Cancers with Low Survival Rates’ (March 2017) 17.
[xvi] Stigma is described as ‘an attribute that makes a person different from others and results in them being discredited’: Laura Marlow, Jo Waller and Jane Wardle, ‘Does Lung Cancer Attract Greater Stigma than other Cancer Types?’ (2015) 88 Lung Cancer 104, 105.
[xvii] Laura Marlow, Jo Waller and Jane Wardle, ‘Does Lung Cancer Attract Greater Stigma than other Cancer Types?’ (2015) 88 Lung Cancer 104; Heidi Hamann, Elizabeth Ver Hoeve, Lisa Carter-Harris, Jamie Studts and Jamie Ostroff, ‘Multilevel Opportunities to Address Lung Cancer Stigma Across the Cancer Control Continuum’ (2018) 13 Journal of Thoracic Oncology 1062.
[xviii] Laura Marlow, Jo Waller and Jane Wardle, ‘Does Lung Cancer Attract Greater Stigma than other Cancer Types?’ (2015) 88 Lung Cancer 104; Heidi Hamann, Elizabeth Ver Hoeve, Lisa Carter-Harris, Jamie Studts and Jamie Ostroff, ‘Multilevel Opportunities to Address Lung Cancer Stigma Across the Cancer Control Continuum’ (2018) 13 Journal of Thoracic Oncology 1062.
[xix] One in three women and one in ten men diagnosed with lung cancer have no history of smoking: Australian Institute of Health and Welfare & Cancer Australia, Lung Cancer in Australia: An Overview (Canberra: AIHW, 2011).
[xx] Australian Government, Cancer Australia, ‘Mesothelioma in Australia Statistics’ viewed 5 October 2021 at https://www.canceraustralia.gov.au/cancer-types/mesothelioma-cancer/statistics.
[xxi] Jock McCulloch and Geoffrey Tweedale, Defending the Indefensible: The Global Asbestos Industry and its Fight for Survival (2008, Oxford University Press, Oxford) 74-75, 138 “Defending the Indefensible”.
[xxii] Defending the Indefensible 138 citing R Doll, ‘Occupational Cancer: A Hazard for Epidemiologists’ (March 1985) 14 International Journal of Epidemiology 22.
[xxiii] Defending the Indefensible 138 citing G Tweedale, ‘Hero or Villain? Sir Richard Doll and Occupational Cancer’ (2007) 13 International Journal of Occupational and Environmental Health 233.
[xxiv] Defending the Indefensible 140-145.
[xxv] Defending the Indefensible 143-144.
[xxvi] Defending the Indefensible 154.
[xxvii] See, eg, Defending the Indefensible 138, 140-145.
[xxviii] James Huff, ‘Industry Influence on Occupational and Environmental Public Health’ (2007) 13 International Journal of Occupational Health and Environmental Health 107, 107
[xxix] Most of the literature that discusses the history of asbestos is contained in books, with very few peer-reviewed journals willing (it seems) to publish content on asbestos beyond narrowly confined medical studies.
[xxx] See, eg, Peta Spender, ‘Blue Asbestos and Golden Eggs: Evaluating Bankruptcy and Class Actions as Just Responses to Mass Tort Liability’ (2003) 25 Sydney Law Review 223; Harold Luntz, ‘A Personal Journey through the Law of Torts’ (2005) 27 Sydney Law Review 393, 409. Luntz argues that a systems approach is much more effective in reducing accidents than imposing liability on individuals. A similar argument can be applied to the asbestos crisis. It is much better to ensure systems and policies are in place that prevent the initial harmful exposure to asbestos from occurring than to pay compensation to victims once they have been diagnosed with an asbestos related disease.
[xxxi] James Huff, ‘Industry Influence on Occupational and Environmental Public Health’ (2007) 13 International Journal of Occupational Health and Environmental Health 107, 107.
[xxxii] T Driscoll, D Nelson, K Steenland, James Leigh, M Concha-Barrientos, M Fingerhut and A Pruss-Ustun, ‘The Global Burden of Disease Due to Occupational Carcinogens’ (2005) 48 American Journal of Industrial Medicine 419. The authors conclude that work-related cancers are largely preventable. See also World Health Organization, ‘WHO Calls for Prevention of Cancer through Healthy Workplaces’ (Media release 27 April 2007). The WHO media release describes asbestos exposure deaths as known and preventable. Countries are warned that if they do not stop using asbestos, they face an epidemic of cancer in coming years.
[xxxiii] This figure derives from the Asbestos Safety and Eradication Agency estimate of 4,000 deaths a year in Australia from asbestos-related diseases.