Dust Disease Diaries: Real lives, real stories of asbestos & beyond

the Asbestos and Dust Diseases Research Institute (ADDRI)
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What are the challenges facing Australians affected by asbestos and dust-related diseases? Renowned author and broadcaster James O’Loghlin hosts a series of inspiring conversations with patients, carers, health care practitioners and lawyers who share their personal perspectives. Created by ADDRI, we dive into the emotional and challenging experiences of individuals facing asbestos and dust-related diseases, as well as those that treat and care for them. Through these stories, we offer information, understanding and hope.

  1. Early detection: A game changer for Lung Cancer. Mark Brooke, CEO of the Lung Foundation Australia talks about the launch of Australia’s National Lung Cancer Screening Program

    FEB 10

    Early detection: A game changer for Lung Cancer. Mark Brooke, CEO of the Lung Foundation Australia talks about the launch of Australia’s National Lung Cancer Screening Program

    “Nothing else in your body works unless the air gets through your lungs.” In this episode we explore one of the most significant public health milestones in Australia’s recent history: the launch of the National Lung Cancer Screening Program on 1 July 2025, a program six years in the making, that offers free, bulk‑billed low‑dose CT scans for eligible high‑risk individuals aged 50–70.  In October, James O’Loghlin sat down with Mark Brooke, CEO of Lung Foundation Australia, three months after the program’s rollout, to discuss what it means for patients, clinicians, and the future of lung health. Lung cancer remains the leading cause of cancer death in Australia, the Asia‑Pacific, and worldwide, despite being only the fifth most common cancer. The stigma associated with lung cancer and smoking has meant people delay seeking help – leading to later diagnosis and more limited treatment options.  In this episode, we unpack why lung cancer demands national attention and Mark explains the evidence behind the program, how people can access it, and why detecting lung cancer before symptoms appear dramatically improves survival. We also look at the program’s early impact: 28,000 people screened in the first three months, 260 lung cancersdetected, and a growing number of incidental findings that are helping clinicians identify other lung diseases. With mobile CT trucks supporting rural and remote communities, 96% of Australians are now within three hours of a scan.  Mark discusses how the program may also help uncover misdiagnosed occupational lung diseases — particularly in people exposed to asbestos or silica dust — and why he’s optimistic occupational exposure will be added to eligibility criteria in the future. Looking ahead to 2032, he shares a bold, data‑driven vision: lung cancer survivorship reaching 50% or more at five years, driven by screening, earlier intervention, and increasingly effective therapies. Key Takeaway: If you’re over 50 and have ever smoked, this program could save your life. Talk to your GP. Don’t wait for symptoms. Early intervention is the difference between a late‑stage diagnosis and a curable disease.     Mark Brooke has over 28 years’ experience leading a diverse range of medical research, consumer health and family support organisations, and is currently Chief Executive Officer of Lung Foundation Australia, taking up this role in September 2018. His previous appointments include CEO of HeartKids Limited, CEO of Asthma Australia and CEO of Playgroup Queensland. In the last 10 years, he has led the design and development of four Australian Government National Health Strategies for a wide range of health areas including asthma, congenital heart disease, lung disease and silicosis prevention. He has also led national strategies / blueprints for action in chronic obstructive pulmonary disease and lung cancer.Mark is passionate about the role profit for purpose organisations play in the health sector, especially empowering patients to be their own advocates and aligning research with consumer-centred outcomes. At the centre of each of these national plans is patient empowerment. He is highly sought after as a speaker on profit for purpose leadership and consumer advocacy. You can find out more about Lung Foundation Australia here.  The National Lung Cancer Screening Program – launched 1 July 2025. Find out more about the program here.  Find out more about Heart of Australia Lunch Cancer Screening Program here. To find out more about ADDRI, visit our website. Thank you to our Podcast Interviewer and host James O’Loghlin and Producer Rod Morri from Sydney Podcast Studios. If you have any questions or comments, please email info@addri.org.au.

    34 min
  2. "Asbestos is ubiquitous in New South Wales."

    JAN 29

    "Asbestos is ubiquitous in New South Wales."

    NSW Minister The Hon. Penny Sharp, NSW Minister for Climate Change, Minister for Energy, Minister for the Environment, and Minister for Heritage, explains what the NSW government is doing to manage the asbestos problem.  Asbestos was banned in Australia more than 20 years ago — so it would be nice to think it’s behind us. But it isn’t. From the asbestos in mulch crisis across Sydney in early 2024 to asbestos turning up in children’s imported coloured sand in late 2025, these situations are a wake-up call: asbestos is still very much part of our present, not just our past. So, what’s actually being done about it in NSW? And what was the outcome of the mulch situation?  In this episode, James O’Loghlin sits down with the NSW Minister for Climate Change, Energy, Heritage and the Environment, the Hon. Penny Sharpe.  While her portfolio is huge, the focus here is tight - asbestos, public safety and the role of the Environment Protection Authority (EPA) in NSW. The Minister breaks down how the EPA responded to the mulch crisis, what the investigation found, and the lessons that are already shaping how asbestos is handled going forward. They also get into the uncomfortable reality of illegal dumping - why it happens, how disposal costs play a role, and what needs to change to make safe removal easier and more accessible. With millions of tonnes of asbestos still sitting in homes and buildings, the Minister discusses NSW’s role in the national asbestos eradication strategy - and why climate-driven disasters like floods and fires make this issue even more urgent. The takeaway? Asbestos isn’t a problem with a quick fix. It’s long-term, it’s complex, and it requires constant attention. As the Minister puts it, it’s something she thinks about “all the time”.   This conversation gives an inside look into how the government is trying to tackle the issue, the Minister’s openness to learning from what’s gone wrong, and her commitment to preventing future asbestos-related incidents.  The Hon. Penny Sharpe was first elected to the NSW Legislative Council in October 2005. Penny is currently Labor's Minister for Climate Change, Energy, Heritage and the Environment, as well as the Leader of the Government in the Legislative Council.   In the previous Parliament Penny was Labor's Shadow Minister for the Environment, Disability Inclusion and Family and Community Services.  In the previous Labor Government, Penny was a Parliamentary Secretary across a number of portfolios including Transport, Roads, Mining and Energy.Prior to entering Parliament Penny was a policy advisor in the areas of Vocational Education & Training, Community Services, Homelessness, Drug & Alcohol, Juvenile Justice and Young People. She worked for several years developing partnerships across NSW between schools, businesses and communities to provide workplace learning for young people.Penny's policy interests include public transport, the environment, education, women, LGBTI reform and e democracy.Penny has previously been a foster carer for young women. She has three children. In her current role, Penny Sharpe is responsible for the NSW Environment Protection Authority - NSW's independent environmental regulator which aims to protect the health of our environment and communities. You can find out more about The Hon Penny Sharpe here. Learn more about the Environment Protection Authority (EPA) here. To find out more about ADDRI, visit our website. Thank you to our Podcast Interviewer and host James O’Loghlin and Producer Rod Morri from Sydney Podcast Studios   If you have any questions or comments, please email info@addri.org.au

    25 min
  3. "We consider people fighters and warriors": Empowering people affected by dust diseases in WA.

    11/24/2025

    "We consider people fighters and warriors": Empowering people affected by dust diseases in WA.

    What support is available in Western Australia for people and families impacted by a dust disease? A lot — and in this episode, host James O’Loghlin sits down with Melita Markey, CEO of the Asbestos Diseases Society of Australia (ADSA), to explore the unique landscape of Western Australia and the history and ongoing legacy of asbestos use in the state. Founded in 1979, ADSA has been woven into Melita’s life from childhood. Her parents began the fight for the rights of people impacted by asbestos diseases—starting with those who lived or worked in Wittenoom, the town built around one of the world’s largest blue asbestos mines. Melita has since taken the reins to continue the family’s mission to support anyone affected by an asbestos or dust disease.  In this episode you will learn about all the critical support services ADSA provides across WA and beyond. Melita shares deeply personal stories and explains the many ways ADSA supports people affected by asbestos—and now silica—related diseases. Their services include health checks, pastoral care, and guidance through complex medical, legal, and compensation processes, all with a strong focus on empowering patients to advocate for their health and legal rights.  As Melita puts it: “We are not a victim support group; we consider people fighters and warriors.”  And when you listen to this conversation, you will see exactly why.  Please note: The views expressed in this episode are the guest’s own.   Melita Markey is the CEO of the Asbestos Diseases Society of Australia (ADSA) in Western Australia. She is passionate about saving lives from preventable asbestos-related diseases. In her role as CEO of ADSA, Melita works to deliver public/occupational education, relevant patient services, appropriate compensation and secure dedicated funding for medical research into treatment/cure for mesothelioma and lung cancer. She believes there is still much work to be done to protect future generations from asbestos exposure in their homes and workplace. Melita is also Chairperson for the National Centre for Asbestos Related Diseases (NCARD) and serves on the Board of The Institute for Respiratory Health.  You can find out more about Melita and the Asbestos Diseases Society of Australia (ADSA) here. To find out more about ADDRI, visit our website: www.addri.org.au   Thank you to our Podcast Interviewer and host James O’Loghlin and Producer Rod Morri from Sydney Podcast Studios   If you have any questions or comments, please email info@addri.org.au

    29 min
  4. On the frontline: the vital role of the Clinical Nurse Consultant for lung cancer and mesothelioma patients

    10/15/2025

    On the frontline: the vital role of the Clinical Nurse Consultant for lung cancer and mesothelioma patients

    In this episode of Dust Disease Diaries, James O’Loghlin sits down with Amy O’Donnell, Clinical Nurse Consultant and the first lung cancer nurse at Chris O’Brien Lifehouse, about why specialist nurses aren’t just important – they can change lives.    Supporting patients from the point of diagnosis and all the way through – it is the nurses that are uniquely positioned to provide both medical care and emotional support. They help patients understand their diagnosis,  help them navigate through treatment, answer questions and provide emotional and psychological support.  And this is exactly why Amy loves her role.  She talks to James about the range of patients she supports - from those experiencing homelessness to those surrounded by loving families.   And the challenges? Balancing the needs of lung cancer patients and mesothelioma patients. Without a dedicated mesothelioma unit, these patients are lumped into the lung cancer service—but their needs are completely different. Amy breaks down how she supports people facing this tough diagnosis: a cancer with a poor prognosis, limited treatment options, and a huge psychological burden—especially because it’s an avoidable disease. She also dives into the wider challenges of lung cancer care, including the stigma around smoking that can make this illness incredibly isolating, and the education and support she provides. Looking ahead, Amy shares her vision for what’s needed – greater awareness and understanding, more compassion and support for patients, dedicated specialist nurses and continued research to expand treatment options. This is a must-listen conversation for anyone wanting to understand the crucial role specialist nurses play in supporting patients with mesothelioma and lung cancer—and what more can be done to improve care and outcomes.   ·       Since this episode was recorded, the National Lung Cancer Screening Program   launched in July 2025 to help detect lung cancer at an early stage in people at higher risk, particularly long-term smokers and former smokers.   Amy O’Donnell is a Lung Cancer Clinical Nurse Consultant (CNC) at the Chris O’Brien Lifehouse. Amy was the first appointed lung cancer nurse in Lifehouse in May of 2019 and has developed the role of the specialist lung cancer nurse there.  Her dedication to the role has been invaluable and has attracted further funding.  She now works alongside a lung cancer Nurse Practitioner.   You can find out more about Amy here.   Amy is a member of the Specialist Lung Cancer Nurse Advisory Group coordinated by ADDRI as part of the Commonwealth Mesotheliomas Alliance – a partnership between ADDRI and Mesothelioma UK, supported by the Biaggio Signorelli Foundation, to share research and nursing expertise to support people suffering from mesothelioma across the Commonwealth.  Find out more about the CMA here.   To find out more about ADDRI, visit our website.   Thank you to our Podcast Interviewer and host James O’Loghlin and Producer Rod Morri from Sydney Podcast Studios hyperlink https://sydneypodcaststudios.com.au/   If you have any questions or comments, please email info@addri.org.au

    30 min
  5. Living with mesothelioma – an American survivor’s story with Heather Von St. James

    09/25/2025

    Living with mesothelioma – an American survivor’s story with Heather Von St. James

    In this episode, James O’Loghlin sits down with Heather Von St. James – a remarkable 20-year survivor of mesothelioma, research advocate, and author from Minnesota, USA. Heather was just 36, and a brand-new mum to a three-month-old baby, when she was diagnosed with malignant pleural mesothelioma in 2005. Likely exposed through second-hand asbestos from her father’s work in construction and demolition, she suddenly faced devastating odds. Heather shares how she made the life-changing decision to travel across the country to Boston, where she underwent radical extrapleural pneumonectomy (EPP) surgery. Separated from her baby, she endured months of chemotherapy and radiation – but never once entertained the thought of dying. You’ll hear Heather talk about her incredible journey of survival – from those early years of diagnosis, treatment, and recovery, through to rebuilding her life, raising her child, and finding her purpose through advocacy. She also opens up about the lack of patient support in the US at the time of her diagnosis, and why she so deeply values the services organisations like ADDRI provide today. Now, two decades on, Heather has not had any recurrence – and she uses her voice to remind people everywhere that there is hope. She’s become a global advocate for rare cancer awareness, working closely with the Mesothelioma Applied Research Foundation, serving on research funding review panels, and offering vital peer support to newly diagnosed patients around the world. Heather’s story is deeply personal, but it’s also one so many can connect with. No matter where you live, a mesothelioma diagnosis carries the same heavy weight. But the way care, advocacy, and support play out can feel very different from country to country. By the end of this conversation, you’ll understand why Heather’s father called her a ‘beacon of hope.’ She truly brings light and strength to people facing a mesothelioma diagnosis – and we hope her story leaves you feeling inspired too.  ·       In the U.S. around 40,000 deaths per year are attributed to asbestos exposure.  In June 2025, the U.S. Environmental Protection Agency (EPA) stated their intention to reconsider the ban on the ongoing uses of chrysotile asbestos  Heather Von St. James is an American Mesothelioma Survivor, Research Advocate and Author based in in Minnesota, USA.   Heather was diagnosed with malignant pleural mesothelioma at age 36 in 2005, shortly after delivering her first and only child.  In 2006 she underwent the radical extrapleural pneumonectomy (EPP) surgery, and has been very open about her journey. She is a passionate advocate for rare cancer awareness and research.  *The personal views shared in this episode are those of the individual participant. You can read more of Heather’s story here. To find out more about ADDRI, visit our website. Thank you to our Podcast Interviewer and host James O’Loghlin and Producer Rod Morri from Sydney Podcast Studios . If you have any questions or comments, please email info@addri.org.au

    26 min
  6. Asbestos. Not Here. Not Anywhere.

    08/08/2025

    Asbestos. Not Here. Not Anywhere.

    Just this week, a new legal battle is taking place in Indonesia.  Activists who successfully secured a court ruling for mandatory labelling of asbestos-containing products as “Hazardous” are now facing defamation lawsuits from a global pro-asbestos lobby group representing some of the world’s largest asbestos producers, including those based in Russia and China. How can this happen? In this episode, James O’Loghlin speaks with Phillip Hazelton, Senior Advisor at Union Aid Abroad – APHEDA, the international development agency of the Australian union movement, who provides a fascinating insight into the global use of asbestos. Phillip brings more than 30 years of experience working across Southeast Asia, where asbestos-related diseases often go undiagnosed due to limited capacity to diagnose.  And if it can’t be diagnosed – does that mean there is no disease?  In many countries this is exactly what’s happening – but we know that it is widespread and increasing.  In Indonesia alone, the Global Burden of Disease study estimates more than 1,000 people die each year from asbestos-related diseases.  Yet public awareness remains low, and the pro-asbestos lobby continues to spread misinformation—including the dangerous myth that “white asbestos” can be used safely. This conversation covers:  The aims and impact of Union Aid Abroad-APHEDA’s regional asbestos campaign in Cambodia, Indonesia, Lao PDR and Vietnam.The persistence of asbestos use globally, including countries still exporting and importing asbestos-containing products.The disinformation campaigns by the pro-asbestos lobby and the strategies used to counter them.The barriers health professionals face in diagnosing asbestos-related diseases in countries where asbestos is still in circulation.  If they can’t diagnose, there is no problem. The importance of international collaboration, especially in listing hazardous substances like chrysotile asbestos under the Rotterdam Convention.  As part of the global effort to eliminate asbestos-related diseases, Union Aid Abroad – APHEDA, in close collaboration with ADDRI and with support from the Australian Government agency ASSEA, has been delivering specialist clinical training in the region. In recent years, teams have travelled to Indonesia, Vietnam and Laos, equipping local health professionals with the skills to identify and diagnose asbestos-related diseases. In late August, a specialist ADDRI training team will travel to Cambodia to continue this vital work.  As Phillip says ‘’We fought long and hard for workers’ rights in Australia and compensation for victims, people in our neighboring countries shouldn’t be dying unnecessarily.”   Phillip Hazelton has spent more than 35 years working in international development, project management, industrial relations and OHS — including 18 years based in Southeast Asia. His extensive experience includes senior roles with Union Aid Abroad – APHEDA, the Australian Manufacturing Workers’ Union, and the International Labour Organization (ILO). Phillip led the Ban Asbestos campaign for seven years, coordinating efforts to reduce the incidence of asbestos-related diseases through policy change, worker education, and regional partnerships. He now works as a Senior Advisor based in Sydney.  Union Aid Abroad APHEDA (Australian People for Health, Education and Development Abroad) is a non-government organisation of the Australian union movement and serves as the international aid agency of the Australian Council of Trade Unions.  It receives funding from the Federal Government.  You can find out more about Union Aid Abroad – APHEDA – here. Learn more about the Asbestos and Silica Safety and Eradication Agency (ASSEA) here. Find out about ADDRI’s international training programs here.To find out more about ADDRI, visit our website.   Thank you to our Podcast Interviewer and host James O’Loghlin   If you have any questions or comments, please email info@addri.org.au

    35 min
  7. When the diagnosis is Mesothelioma: How the ADDRI Support Service helps patients and families navigate the journey

    06/17/2025

    When the diagnosis is Mesothelioma: How the ADDRI Support Service helps patients and families navigate the journey

    When a person receives a mesothelioma diagnosis, they are often desperately searching for answers. In today’s episode, James O’Loghlin sits down with Carmel Oostveen, one of the dedicated Mesothelioma Support Nurses at the Asbestos and Dust Diseases Research Institute (ADDRI), to explore the compassionate and complex world of supporting people affected by mesothelioma. Carmel shares her journey into nursing, from surgical and intensive care units through to her current role, where she provides one-on-one emotional, psychological, and clinical support to patients and carers navigating this rare and devastating disease. We learn how Carmel first encountered mesothelioma patients during her time in a cardiothoracic ICU, caring for them after surgery and witnessing the intensity of Trimodal Therapy. That early experience sparked a deep commitment to helping patients and their families through some of the most challenging moments of their lives. In conversation with James, Carmel discusses how ADDRI’s Support Service—unique in being independent of hospitals and available across Australia—offers both clinical expertise and emotional support to individuals and families navigating a mesothelioma diagnosis. Alongside fellow nurse Pamela Logan, she provides one-on-one guidance through complex healthcare systems, starting from the very first phone call. Carmel discusses the realities of a typical day, the importance of listening, and how she helps patients and carers through the most difficult conversations. She also highlights how support extends beyond the person diagnosed—because carers need care too.  If you or someone you love has recently been diagnosed, Carmel explains how to reach out and why doing so can make all the difference.   Carmel Oostveen is a Mesothelioma Support Coordinator with the Asbestos and Dust Diseases Research Institute (ADDRI).  A Clinical Nurse Consultant Carmel’s career in nursing spans over several decades, marked by her unwavering dedication to her patients. Her journey into the specialised field of mesothelioma was built on a strong foundation of experience as an Intensive Care (ICU) nurse, with a particular focus on cardiothoracics.  In her role at ADDRI, Carmel works closely with diagnosed mesothelioma patients, offering vital support and guidance to both them and their families.      Find out more about the ADDRI Support Service here: https://addri.org.au/support/getting-support/ To find out more about ADDRI, visit our website: www.addri.org.au   Thank you to our Podcast Interviewer and host James O’Loghlin  https://jamesologhlin.com/> and Producer Rod Morri from Sydney Podcast Studios https://sydneypodcaststudios.com.au/. If you have any questions or comments, please email info@addri.org.au

    33 min
  8. Shane Wormald - a Tunneller’s story

    04/01/2025

    Shane Wormald - a Tunneller’s story

    In this episode, we speak with Shane Wormald, a road tunnelling and mining worker who has been diagnosed with Progressive Massive Fibrosis, Silicosis, COPD, and Rheumatoid Arthritis after a 30-year career in an industry he loves.   Shane was the first person in his field to publicly speak out on the dangers tunnel workers face working in incredibly dusty conditions, raising awareness of the deadly risks associated with respirable crystalline silica exposure. Shane's story became widely known when he appeared on Channel 10’s The Project in late 2021, speaking out about silicosis and the impact it had on his life. As a well-respected member of the tunnelling community, Shane's courageous decision to speak out has helped spark change and shine a light on the hidden dangers of the profession, which affect not only workers like him but also future generations, including his sons and nephews in the same industry. In this interview with James O’Loghlin, Shane shares his personal experience with his work, the years of misdiagnosis and ultimately, his official diagnosis of silicosis in 2016.  He discusses the emotional toll it has taken, and the importance of early diagnosis.  And, he provides valuable advice for workers in the tunnelling and mining industries, especially the younger generation, and discusses his hopes for future improvements in safety and health standards. During this conversation discover:   An introduction to Shane WormaldExposure history and Occupational backgroundSymptoms, misdiagnosis and diagnosisThe decision to speak outEmotional ImpactAdvice for workers and families in the IndustryLooking forwardShane’s powerful story – his courage and resilience - and his call to action for better awareness, safety, and early diagnosis for workers in hazardous industries is a must-listen.  Resources and Links: The Silicosis Support Hub @ silicosis.org.auThe Project Episode: ⁠Silicosis Fears for Tunnel Workers⁠ To find out more about ADDRI, visit our website: ⁠www.addri.org.au⁠   Thank you to our Podcast Interviewer and host ⁠James O’Loghlin⁠ and Producer Rod Morri from ⁠Sydney Podcast Studios⁠. If you have any questions or comments, please email ⁠info@addri.org.au

    29 min
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What are the challenges facing Australians affected by asbestos and dust-related diseases? Renowned author and broadcaster James O’Loghlin hosts a series of inspiring conversations with patients, carers, health care practitioners and lawyers who share their personal perspectives. Created by ADDRI, we dive into the emotional and challenging experiences of individuals facing asbestos and dust-related diseases, as well as those that treat and care for them. Through these stories, we offer information, understanding and hope.

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