Mesothelioma Landscape: Then and Now
In the run-up to Action Mesothelioma Day (AMD) an annual event to raise public awareness of the UKs ongoing asbestos epidemic I was thinking about the mesothelioma landscape when AMD was launched (2006) and now (2023).1 In the bad old days, patients were given their diagnoses and advised to go home and get their affairs in order. The outlook was more than bleak with no treatments on offer and no hope of any medical breakthroughs.
In those days, there was little public awareness about mesothelioma and hardly any mention of it in the press except in local newspaper reports of coroners inquests. Once diagnosed, mesothelioma patients became invisible, collateral damage in the quest for profits by asbestos stakeholders. As mere numbers in the silent epidemic, they were unrecognized and unsupported by governments of various flavours despite the fact that the state had colluded in causing their fatal diseases by allowing the asbestos industry to flourish unchecked long after being alerted to the dangers of asbestos use.
Now, thanks to ground-breaking work by asbestos victims groups throughout the UK, mesothelioma charities, trade unions, health and safety campaigners, academics, Parliamentarians and others, the situation has been transformed. UK researchers are amongst the worlds top medical experts in the development of mesothelioma treatments and protocols. Clinical trials are being performed at centers of excellence around the country even as mesothelioma specialists engage in collaborative research projects with overseas partners.
From a UK vantage point, the difference is overwhelming. Whilst no cure has been discovered, there have been advances, with immunotherapy and chemotherapy treatments stabilizing and even shrinking mesothelioma tumors. Some patients, not many but a few, continue to defy medical prognoses and survive for many years.
What led me down the memory trail was the confluence in recent days of mesothelioma events in Asia, Europe and Latin America. In Indonesia, France and Brazil mesothelioma specialists, researchers and clinicians have been building medical capacity at the grassroots, progressing high level research initiatives and providing specialized healthcare programs for the asbestos-exposed. How spectacular is that?
In 2019, using global data disseminated by the World Health Organization, it was estimated that there were 1,661 deaths in Indonesia due to occupational exposures to asbestos; 1,268 (76%) from lung cancer, 225 (14%) from mesothelioma. Only a handful of these cases were diagnosed due to a lack of medical expertise and the difficulty of diagnosing diseases which can take decades to manifest themselves.
From June 21 to 23, 2023, an International Symposium & Workshop on Asbestos-related Diseases was held for medical specialists at Binawan University in Jakarta, Indonesia. Amongst the areas explored by a range of medical specialists were various aspects of: oncology, epidemiology, public health, radiology, specialist nursing and pathology. The events were organized and supported by the Indonesian Ban Asbestos Network (Ina-Ban), Local Initiative for OSH Network (LIONS), Australias Union Aid Abroad (APHEDA) and other Australian partnering organizations.2
Participants and speakers at the International Symposium & Workshop on Asbestos-related Diseases in Jakarta. Picture courtesy of INA-BAN.
In a briefing compiled about the activities in Jakarta, it was reported that:
This activity was a big leap forward as part of the campaign to free Indonesia from asbestos-related diseases. The transfer of knowledge through comprehensive asbestos-related disease management workshops was carried out collaboratively among various disciplines involved in the diagnosis of asbestos-related diseases. By increasing the understanding of how to diagnose diseases caused by asbestos, it is hoped that there will be sustainable cooperation in the future in building medical capacity to diagnose the diseases caused by asbestos.3
On June 22, 2023, a group of ten former employees of an asbestos factory once owned by Brasilit,4 part of the French multinational Saint Gobain, travelled 270 miles from Rio de Janeiro to the Heart Institute (InCor) of the University of São Paulo for medical examinations at the outpatient clinic under the supervision of pneumonologist Dr Ubiratan de Paula Santos. During the day, the patients underwent a series of procedures including X-rays, pulmonary function tests and lung computed tomography (CT) scans.5 The medical reports will be completed in fifteen days. As the clinic is a public sector facility, the tests and healthcare were provided free of charge. The results of the tests will be communicated to the patients within a fortnight and any follow-ups needed will be provided by the InCor team.
Workers from Rio de Janeiro thanking the members of the InCor team after their medical check-ups on June 22, 2023. Picture courtesy of ABREA.
This outreach program was pioneered in 2018 by the Brazilian Association of the Asbestos-Exposed (ABREA) in collaboration with Dr Ubiratan and his team at InCor. Commenting on the value of this initiative, ABREA President Eliezer João de Souza said:
The treatment provided by the InCor clinic and the results of its tests are fully trusted by ABREA members ABREAs aim is to make the impact of asbestos exposures visible by ensuring that each victim is counted. The InCor clinic not only provides first-rate treatment but also registers each case with the relevant authorities in order to build up an accurate picture of the number of Brazilian asbestos victims.
The asbestos outreach work was made possible by the generosity of an anonymous donor from North America, whose family had also experienced the loss of loved ones from asbestos-related diseases.6
From June 25-28, 2023, the 16th meeting of the International Mesothelioma Interest Group (iMig) took place in Lille, France.7 This was the first in-person meeting since 2018 and attracted more than 500 medical specialists, researchers and clinicians from around the world. The plenary, workshop, discussion and poster sessions were held at the Lille Grand Palais under the auspices of iMig 2023 Conference Chair Professor Arnaud Scherpereel, iMig President Jan van Meerbeeck and Virginie Westeel, President of the French Cooperative Thoracic Intergroup.
Since 1995, iMig has held biennial meetings, except during the Covid pandemic, in Asia, Africa, Australia, Europe and North America,8 the purpose of which was to facilitate communication and information exchange amongst the iMig community of physicians, researchers, scientists, care providers, and civil society advocates working to better understand the underlying genetics, immune and molecular mechanisms, proteomics, and epidemiologic factors associated with mesothelioma.9 It is no exaggeration to say that the relationships forged at iMig meetings have been pivotal in encouraging researchers efforts to develop new treatment stratagems and progress translational medicine in the quest to improve diagnostic tools, medicines, procedures, policies, awareness and preventive strategies.
iMig 2023. From the left: Virginie Westeel, Bruce Robinson, Michelle Dietz, Kofi Stevens, Steven Kazan and Arnaud Scherpereel. Photo courtesy of iMig 2023. Photographer Patrice Raveneau. Michelle Dietz & Kofi Stevens were winners of the 2023 Young Investigators Awards sponsored by the Kazan Law Firm; Dr Matthieu Foll, the other YIA winner, is not in the picture due to an early departure from Lille.
Having returned home after an intensive few days in Lille, Steven Kazan of the California law firm Kazan, McClain, Satterley & Greenwood a stalwart supporter of iMig since 2006 said:
There was an incredible buzz at iMig. Colleagues were pleased to finally be meeting in-person after so many years and to have so much to discuss. Since the 2018 iMig meeting in Ottawa, there have been many positive developments, more than I can remember in all the years preceding. The nihilism regarding mesothelioma which had been prevalent amongst medical practitioners in the late 20th century has now been tempered with glimmers of hope. There was a plethora of interesting conversations not just in the official sessions but in the corridors and hallways. The work on show in the many posters exhibited was very impressive.10
Sharing Stevens enthusiasm was Liz Darlison, CEO of Mesothelioma UK a national charity which provides specialist mesothelioma nurses in local hospitals across the UK:
iMig 2023 was a fabulous event and Lille was a perfect host city. After five years, it was good to be back together face to face, seeing old acquaintances, re-establishing links and making plans together, it really was a joy over the entire four days. The clinical energy and interest in mesothelioma has continued to grow and the appetite for prevention, awareness and better asbestos management was more evident at iMig this year that ever before. There was a measurable increase in the nursing contribution and the Mesothelioma UK team were at the forefront; the program was full of nursing and supportive care abstracts, many of which were by the 21 Mesothelioma UK nurses in attendance.
Once again we had the International Thoracic Oncology Nursing Forum (ITONF)/ iMig joint workshop with 65 attendees. Our Lille hosts welcomed the nurses to their hospital and showed us around, they really have an amazing facility. This year a 2nd nurse has been voted onto the iMig board and US nurse Mary Hesdorffer received the groups biennial service award. In 2025 the meeting will be held in Philadelphia. 11
Mesothelioma UK team at iMig 2023. Picture courtesy of Mesothelioma UK.
July 3, 2023
1 Action Mesothelioma Day (AMD) is scheduled for July 7, 2023. The first AMD took place in February, 2006.
Action Mesothelioma Day 2006. March 3, 2006.
Kazan-Allen, L. Mesothelioma 2022: Global Disaster, National Tragedy. July 18, 2022.
2 Dukungan Kolaboratif Tenaga Medis untuk Eliminasi Penyakit Akibat Asbes [Medical Personnel Collaborative Support for Eliminating Diseases Due to Asbestos]. June 24, 2023.
4 Although the plant closed thirty years ago, historic workplace exposures to asbestos created a hotspot of asbestos-related diseases in the Senador Camará neighborhood in the west of Rio where many of the workers lived.
5 Kazan-Allen, L. Mobilizing for Asbestos Justice 2023. May 22, 2023.
6 Kazan-Allen, L. Brazilian Success: Pioneering Medical Program to Expand! October 21, 2020.
10 Email from Steven Kazan. June 29, 2023.
11 Email from Liz Darlison, June 29, 2023.