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

    HACE 1 DÍA

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

    25 SEP

    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
  3. Asbestos. Not Here. Not Anywhere.

    8 AGO

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

    17 JUN

    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
  5. Shane Wormald - a Tunneller’s story

    1 ABR

    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
  6. How do you create awareness of the hazards you can’t see? The critical role of unions in ensuring a healthy and safe workplace

    25 FEB

    How do you create awareness of the hazards you can’t see? The critical role of unions in ensuring a healthy and safe workplace

    Each year, 4,000 Australians lose their lives to asbestos-related diseases—making it the leading killer of workers, not just in Australia but around the world. In Australia alone, an estimated 6 million tonnes of asbestos remains in the built environment. So, what happens when this material starts to break down? Additionally, around 600,000 Australian workers are exposed to hazardous silica dust in their workplaces. In today’s episode, we dive deep into the critical role that unions play in advocating for the fundamental right of every worker to a safe and healthy working environment. We're joined by Liam O’Brien, Assistant Secretary of the Australian Council of Trade Unions (ACTU). With over 23 years of experience as a union official, Liam is passionate about ensuring that every worker has access to a safe workplace. Liam sits down with James O’Loghlin to discuss the ongoing asbestos and silicosis crisis in Australia, the importance of combating complacency around invisible workplace hazards, and the phases of activism that have driven significant changes over the decades. The conversation also highlights the work that remains to be done—and the vital task facing today's generation of workplace safety activists.  Though the benefits of this work may not be immediately apparent, the long-term impact in terms of lives saved will be huge.  In this episode, we explore: The role of the ACTU and current initiatives to combat asbestos and silica dust exposure. How unions have played a pivotal role in raising awareness of the asbestos and silicosis issues over the decades. The history of asbestos in Australia and the pressing question today: How can we safely and swiftly remove it from our buildings? The accelerated rate of disease amongst engineered stone workers – and the successful campaign leading to Australia’s world-first ban on engineered stone. The risks associated with tunnelling and the crucial work unions are doing to protect workers exposed to silica dust in this field. The current state of workplace exposure to hazardous dust, and what further actions are necessary to ensure workers' safety. Australia’s leadership in the global fight against asbestos exposure.  Liam O’Brien Liam was re-elected as Assistant Secretary at the ACTU Congress in June 2024.  As ACTU Assistant Secretary, he is responsible for leading the movements policy, industrial and campaigning work on work health and safety and workers’ compensation matters. Liam is passionate about the rights of all workers to have safe, healthy and decent work, and is a member of Safe Work Australia (SWA) and the Asbestos and Silica Safety and Eradication Council (ASSEC). You can find out more about Liam and the ACTU here: https://www.actu.org.au/officer/liam-obrien/   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

    41 min
  7. I’ve been diagnosed with silicosis - how do I start the compensation and legal process?

    10/12/2024

    I’ve been diagnosed with silicosis - how do I start the compensation and legal process?

    In this episode, we are joined by Jonathan Walsh, a Principal Lawyer specialising in asbestos, silica, and occupational diseases with Maurice Blackburn Lawyers. Jonathan is an expert in dust diseases law and a dedicated advocate for those impacted by these diseases. With a deep passion for justice and compassion for his clients, he works tirelessly to secure the best possible outcomes for individuals affected by these life-changing conditions.    Jonathan sits down with James O’Loghlin to discuss the legal landscape and the health implications for those impacted by silicosis. During this conversation, we discuss the connection between silica dust exposure, workers' rights, and the historical context of these illnesses. Jonathan shares really important insights into how these diseases have affected clients, how litigation has evolved, and the practical process for people who have been impacted.    In this episode, you’ll learn:    ·       The various types of dust exposure that cause disease ·       What to do if you think you’ve been exposed  ·       Why workers should see a specialised lawyer as soon as possible to help navigate the state-based systems  ·       How to start the process with a lawyer - it’s easier than you think! ·       What’s involved in claiming workers compensation and common law damages  ·       How silicosis claims differ from asbestos claims  ·       What needs to be done in Australia to protect workers      Jonathan Walsh is a Principal Lawyer and the Practice Group Leader of the QLD, NT and NSW Dust Diseases teams at Maurice Blackburn Lawyers.  He is the Practice Leader for Queensland/Northern Territory, New South Wales and New Zealand, and an Accredited Specialist in Personal Injury (Dust Diseases),   You can find out more about Jonathan here:https://www.mauriceblackburn.com.au/our-lawyers/jonathan-walsh/ 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 https://sydneypodcaststudios.com.au/   If you have any questions or comments, please email info@addri.org.au

    39 min
  8. In conversation with Professor Dean Fennell, international leader in mesothelioma research

    07/10/2024

    In conversation with Professor Dean Fennell, international leader in mesothelioma research

    In August 2024, we were thrilled to host UK-based Professor Dean Fennell, a renowned expert in mesothelioma research, in Sydney.  He has designed and led numerous investigator-initiated trials from phase 1 through phase 3, placing him at the forefront of this critical field.   Join James O’Loghlin as he engages in a thought-provoking discussion with Professor Fennell about his clinical and translational research in mesothelioma, as well as the latest treatment options available in the UK.   In this episode, you’ll discover: Insights into Professor Fennell’s groundbreaking research on the gut microbiome and its influence on treatment response. How genetic discoveries are shaping precision medicine and personalised therapy for mesothelioma. An overview of the clinical trials he’s spearheading and the significant advancements in this area.   Professor Fennell also shares details about the exciting collaborations between the UK and ADDRI in Australia, exploring the potential for simultaneous clinical trials in both countries to better serve patients.   His optimism about new therapeutic developments and the commitment to global collaboration shines through, making this a must-listen episode for anyone interested in the future of mesothelioma treatment.   You can find out more about Professor Dean Fennell’s work here: https://mesothelioma-research-leicester.com/team/dean-fennell/   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 https://sydneypodcaststudios.com.au/   If you have any questions or comments, please email info@addri.org.au

    27 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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