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. May 19

    The psychological impact of a life-limiting diagnosis

    How do you cope with the shock of a terminal or life-limiting diagnosis?  In this episode of Dust Disease Diaries, James O’Loghlin speaks with psychiatrist and mental health expert Professor Ian Hickie about the psychological impact of a dust disease diagnosis.   As co-hosts of the Minding Your Mind podcast that delves into all aspects of mental health, Ian and James are used to tackling the tough topics.  In this conversation they focus on the psychological and emotional impact on people who have received the shocking diagnosis of mesothelioma or silicosis.  They discuss common reactions in the early days after diagnosis - when things can feel surreal - and why numbness, denial, anger and grief often arrive in waves. They explain why the practical “to-do list” can kick in before emotions catch up, and share ways to move toward acceptance without minimising what has happened. The conversation also covers making space for anger without getting stuck there, and using small daily anchors (daylight, sleep routines and gentle activity) to protect mental health when life is turned upside down. James and Ian share practical strategies for managing overwhelm, pain, and difficult conversations with partners, family, children and friends. This episode offers grounded, compassionate advice for anyone navigating the shock of diagnosis.    Professor Ian Hickie is a psychiatrist and Co-Director of Health and Policy at the University of Sydney’s Brain and Mind Centre. He is one of Australia’s leading advocates for, and commentators on, mental health. Read more about Professor Hickie here. Ian Hickie and James O’Loghlin explore mental health topics in their Minding Your Mind podcast. They have also co-authored several books on mental health. Find out more here. To find out more about ADDRI, visit here. 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

    The psychological impact of a life-limiting diagnosis

  2. Apr 21

    On the road to early detection: Inside icare’s Lung Bus and its mission to protect NSW workers

    In this episode of Dust Disease Diaries, we’re joined by Milly Heinnen, Head of Health Screening, Dust Diseases Care at icare, who shares how mobile lung health screening – the icare Lung Bus - is helping protect workers across NSW from asbestos and silica-related diseases. Milly explains the role of the Dust Diseases Care Scheme, how the new state-of-the-art Lung Bus launched in February 2025 is expanding access to free screening, and what workers can expect during the process - from X-rays and lung function tests to specialist review and follow‑up. She discusses why early detection is critical, how data is used to target high‑risk regions and industries, common concerns workers and employers have about screening, and how flexible service models and emerging technologies like AI could shape the future of lung health monitoring across the state.   Milly Heinnen is Head of Health Screening for the Dust Disease Care (DDC), and is dedicated to increasing awareness of the importance of health screenings for dust-related diseases across NSW. In this position, she leads efforts to enhance screening services for at-risk workers, innovate work methods, and partner with stakeholders to create an impact for those affected. Through this role, she aims to make a significant impact on public health by enhancing the visibility of dust disease screenings and ultimately improving health outcomes for those affected. By raising awareness and providing accessible screening options, we can empower individuals to take charge of their health. You can find out more about the icare Lung Bus 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

    On the road to early detection: Inside icare’s Lung Bus and its mission to protect NSW workers

  3. Mar 16

    Supporting Mesothelioma patients across Western Australia: A specialist nurse pers

    In this episode, we speak with Kirsten Mooney about the vital role specialist nurses play in supporting people diagnosed with mesothelioma, and the realities of delivering care across Western Australia. Trained in Edinburgh and now a Thoracic Cancer Clinical Nurse Consultant in WA, Kirsten sits down with James O’Loghlin to explain how specialist nurses guide patients from diagnosis through treatment and palliative care, manage complex symptoms, advocate in multidisciplinary meetings, and provide a consistent, trusted point of contact during an overwhelming time. With mesothelioma often carrying significant psychological and social impact, continuity of care can make a significant difference. Western Australia — the largest state in the country, with a long history of asbestos exposure, particularly in the former mining town of Wittenoom — faces unique challenges shaped by distance, travel and regional access. Kirsten discusses how geography influences the patient experience and why coordinated, statewide support matters. Although mesothelioma affects fewer people than lung cancer, the needs are often complex and deeply personal.  As part of the ADDRI-Mesothelioma UK Commonwealth Mesothelioma Alliance, supported by the Biaggio Signorelli Foundation, Kirsten hopes to see a dedicated network of mesothelioma nurses in Australia — strengthening education, raising awareness, building research partnerships and improving care - because, as she reminds us, “mesothelioma is mesothelioma wherever you live.” This is an excellent conversation to understand the incredible difference specialist nurse care has on people and families living with mesothelioma.  Kirsten is a Thoracic Cancer Clinical Nurse Consultant who provides a state-wide service within Western Australia.  She is employed by the Cancer Network WA. Kirsten is operational at the patient, health professional and service level. She provides a strategic, state-wide influence in the provision of cancer nurse coordination and clinical expertise within the field of lung cancer and mesothelioma. The clinical aspect of the role begins at diagnosis and extends along the continuum of the patient journey through to palliative care. The strategic aspect of the role includes clinical leadership and consultancy to medical, nursing and allied health care professionals, as well as input to policy and strategy development.  Kirsten is also part of the specialist nurse group that ADDRI has brought together under the Commonwealth Mesothelioma Alliance – a partnership between ADDRI and Mesothelioma UK, funded by the Biaggio Signorelli Foundation.  Mesothelioma UK has a network of trained specialist mesothelioma nurses around the UK  - Australia has none.  The aim is to replicate the UK mesothelioma nurse model in Australia, as well as share research and training.    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

    Supporting Mesothelioma patients across Western Australia: A specialist nurse pers

  4. 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.

    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

  5. 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

    "Asbestos is ubiquitous in New South Wales."

  6. 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

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

  7. 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

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

  8. 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

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