Global Asbestos Victims Groups Confront the Covid-19 Pandemic1
The arrival of Covid-19 adversely affected the ability of civil society groups to support vulnerable individuals such as people suffering from asbestos-related diseases. The restrictions introduced and conditions imposed to curtail the spread of the virus delayed potentially life-saving treatments and upended the administration of key government schemes. Early diagnoses of asbestos-related diseases, essential to optimize treatment outcomes, were forestalled in many countries as healthcare resources were marshalled to treat those with coronavirus and patients with symptoms of asbestos-related diseases, wary of the dangers of exposure to the virus in healthcare centers, took shelter at home.
Despite the multiple challenges posed by the pandemic, asbestos victims support groups adapted quickly to the new reality in order to continue providing essential services for the asbestos-injured. Knowing the dire prognosis for many of those diagnosed with asbestos-related diseases, there was no time to waste. Grassroots campaigners rose to the challenge exploring ways of communication that disseminated information but not the virus. From Brazil to Japan via the UK, Italy, Korea and Australia, applications for benefits were submitted, politicians were lobbied and legal cases were progressed.
Brazil: The Brazilian Association of the Asbestos-Exposed
On November 6, 2021 members of the Brazilian Association of the Asbestos-Exposed (ABREA) gathered in Osasco for the first in-person meeting since the pandemic began.
November 6, 2021: ABREA Members showing their certificates of double vaccinations!
The speakers included Dr. Ubiratan de Paula Santos, the founder and administrator of an innovative asbestos outreach program run in conjunction with ABREA by the Heart Institute of the University of São Paulo and attorney Paulo Lemgruber from the law firm Mauro Menezes & Partners.2
Dr. Ubiratan provided information about Covid-19 and ways to ABREA members could protect themselves highlighting the importance of having Covid-19 and flu vaccinations, and adopting a precautionary approach, including hand-washing, the use of alcohol gel, limited physical contact and meeting in open spaces. At the first sign of Covid, people were instructed to contact him immediately.
Throughout the pandemic, Dr. Ubiratan said, efforts to proactively search for those at high-risk of contracting asbestos-related diseases as a result of toxic occupational exposures in São Paulo were continued. At the same time, work was ongoing to build medical capacity to treat other at-risk populations in the cities and surrounding areas of Campinas, Piracicaba and Rio Claro in collaboration with local and regional partners. According to Dr. Ubiratan:
The impact of Covid-19 has highlighted the vulnerability of people with asbestos-related diseases. This knowledge has incentivized medical professionals to prioritize outreach work such as regular contact, at short intervals, with patients with diseases related to asbestos to assess those with possible symptoms of Covid-19, as well as provide guidance on vaccination against influenza and pneumonia.
Lawyer Paulo Lemgruber provided a timely report on the state of legal actions mounted by ABREA including a lawsuit over the continued mining and export of asbestos fiber in direct contravention of a 2017 Supreme Court ruling as well as the status of personal injury cases. On November 13, former asbestos workers from the Brasilit/Saint Gobain French multinational conglomerate in the city of São Caetano do Sul convened at the second in-person ABREA meeting.
November 13, 2021: Lawyer Paulo Lemgruber addressing ABREA meeting in São Caetano do Sul.
Reflecting on developments over the last two years ABREA Co-Founder Fernanda Giannasi said:
The loss of life in Brazil from the virus has been overwhelming. Knowing how vulnerable ABREA members were, we acted swiftly to ensure that no one was isolated. To prevent the spread of the virus, ABREA staff and volunteers operated from their homes using mobile phone apps everyone in Brazil has a mobile phone such as WhatsApp to keep in touch and deliver vital information on the virus and other health-related matters. When our beloved President Eliezer João de Souza and his wife contracted Covid there was a huge outpouring of support throughout the country. Fortunately, they have both made a good recovery. The in-person ABREA meetings this month were well-attended and well-received. Nothing can replace the communion experienced by bringing people together.3
Japan: The Mesothelioma Support Caravan and The National Association of Asbestos-related Disease Victims and Their Families
In Japan, technology was deployed to minimize the adverse impact of the ban on in-person meetings since February 2020. Using Zoom videoconferencing technology, members of the Mesothelioma Support Caravan and the National Association of Asbestos-related Disease Victims and Their Families were able to hold regular meetings which were also attended by participants from Korea. The expansion of the victims network facilitated by Zoom resulted in bilateral support for the first-ever Mesothelioma Awareness Month which took place during the Summer of 2021.
Zoom meeting to mark first Japanese Action Mesothelioma Day, July, 2021.
On June 6, 2021, officials from the Ministries of Labour and Environment participated in a Zoom meeting with members of the National Association of Asbestos-related Disease Victims and Their Families. Throughout the year, asbestos victims groups and legal and medical professionals concerned about bureaucratic delays caused by the coronavirus epidemic, organized outreach initiatives such as asbestos telephone hotlines which provided information on available support, treatments and benefits. Commenting on topical developments in Japan during the pandemic Sugio Furuya, Coordinator of the Asian Ban Asbestos Network, said:
Treatment of patients with asbestos-related diseases proceeded more or less as normal during the pandemic in Japan. In May 2021, the Ministry of Health approved a new immunotherapy treatment a combination of the drugs Nivolumab and Ipilimumab for patients with pleural mesothelioma. In April 2022, a new government scheme will become operational to pay compensation to construction workers with asbestos-related diseases following a landmark Supreme Court decision in on May 17.2021. This scheme, which will mean that protracted litigation will no longer be needed, is a huge step forward and the result of years of lobbying by victims groups, trade unions and their partners.4
Korea: The Ban Asbestos Network of Korea
According to Yeyong Choi, of the Ban Asbestos Network of Korea (BANKO), the pandemic prevented Korean asbestos victims groups and their civil society partners from organizing a national conference in 2020 and 2021. Other in-person meetings were also put on hold as many of Koreas asbestos victims were elderly and at high risk of contracting the coronavirus. Although there were online Zoom meetings, many of the elderly patients did not have access to this technology. Because of these difficulties, BANKO wasnt able to monitor the condition of its members, some of whom died during the pandemic. Prohibitions on attending funerals also contributed to the lack of information about the welfare of BANKO members. Work by local and central government agencies to identify patients at high risk of contracting asbestos-related diseases such as people who had formerly worked with asbestos or had lived near asbestos mines or in houses with asbestos roofing also diminished due to Covid-19 restrictions and reductions in budgets.
November 4, 2021 press conference at Ulsan City Hall held by the local branch of the National Plant Construction Labor Union.
Commenting on the knock-on effects of the pandemic in Korea, Yeyong Choi said:
Work to identify and monitor people at risk from historic asbestos exposures was downgraded in 2020 & 2021; this must be addressed by the authorities as a matter of priority. In addition, the Government should extend support for claimants with asbestosis and implement an improved and coordinated program to provide strict surveillance for asbestos removal of the built environment with a focus on schools and densely populated areas.
In recent weeks, programs to assist victims such as a Healing Camp held in Gongju, South Chungcheong Province and mobilize support for workers who had contracted asbestos-related diseases after exposures in the petrochemical industry have once more begun to raise awareness of the unmet needs of many Korean victims. Although, South Koreas Ministry of Environment will increase benefits to asbestos victims by 5.6% from January 1, 2022, the claims of many of the injured remain unrecognized. 5
Italy: VITAS & Association of Asbestos Victims Families (AFeVA)
Italy shares with other industrialized countries a tragic legacy left by the mining, processing and manufacturing of asbestos fiber and asbestos-containing products. The town of Casale Monferrato has become an icon in the fight by workers, trade unionists and campaigners for asbestos justice as it has been at the center of a number of landmark asbestos criminal trials against those whose actions caused the national asbestos epidemic. During an interview with Oncologist Dr. Daniela Degiovanni last month (November, 2021), she told me that staff from the Hospice Monsignor Zaccheo and VITAS a voluntary association founded in 1996 to provide palliative care in Casale Monferrato continued to support and treat asbestos victims at home or in the Hospice throughout the pandemic. The existence in Casale of a diagnostic, therapeutic and care pathway dedicated to asbestos victims meant that diagnoses were made and treatment provided throughout the Covid-19 emergency. A variety of methods, including computer and phone applications, were used to contact patients and family members to ensure that no one was left isolated during the pandemic.6 Dr. Degiovanni confirmed that the provision of services by AFeVA, a local group representing asbestos victims and their families, returned to normal some months ago. In-person meetings of Casales mesothelioma support group will, however, not resume until next year (2022).
UK: The Asbestos Victims Support Groups Forum UK and the HASAG Group
In the UK, asbestos victims groups adapted their practices so that support for victims and their families could continue despite restrictions imposed to curtail the spread of Covid-19. Government departments, unfortunately, were slow to adapt to the changed reality leaving claimants in limbo for a protracted period of time. According to Joanne Carlin, Chair of the Asbestos Victims Support Groups Forum UK (the Forum):
Staff at the Department of Work and Pensions continued to ensure claims for benefits for mesothelioma and lung cancer patients were processed efficiently, without the need for patients to have to post forms etc. Unfortunately, the processing of asbestosis and pleural thickening cases was more of an up-hill struggle as face-to-face medicals ceased and no action was taken to progress claims. After a 9-month campaign by Forum members and their MPs, bureaucratic obstacles were overcome and the payment of government benefits for these claimants resumed.
In southern England, staff at the HASAG Asbestos Disease Support Group began home visits again in May 2021 observing all Covid precautions. HASAG coffee mornings, which had continued during the pandemic on Zoom, went back to in-person gatherings in September 2021 in Southampton, Portsmouth, Surrey, Sussex, Berkshire, Essex and London.
HASAG Coffee morning Southampton, November 11, 2021.
According to Lynne Squibb, Co-Founder of HASAG:
During COVID we tried our very best to offer business as usual. This involved phone visits, counselling sessions and coffee mornings on Zoom and the use of all possible means to stay connected with our patients as much as possible. We were so lucky that all our patients fully understood the need to keep them safe and do everything from a distance. We were, as far as I am aware, the first group to offer Zoom coffee mornings which were an amazing success. Our priority was to ensure that no patient or carer felt isolated. COVID was brutal for most patients, some missed treatment others got their bad news break over the phone so we needed to provide a cushion for them. All of this was alongside our usual services helping HASAG members to navigate the complexity of the benefits process and access reliable sources of information and support.
HASAG Christmas Party, December 9, 2021.
Australia: The Asbestos Diseases Society of Australia
Fortunately for our colleagues at the Asbestos Diseases Society of Australia (ADSA), life in Western Australia proceeded much as normal throughout 2020 and 2021 with only a couple of short snap lockdowns. Explaining the impact of Covid-19 on the ADSAs operations, CEO Melita Markey said:
Here in WA, we were so fortunate to avoid the worst of the pandemic. Except for brief periods, medical care, check-ups and services for the members of the society proceeded unabated. Of course, we made sure that every precaution was in place to protect members whose illnesses make them particularly vulnerable to the coronavirus. In the office, social distancing was observed and hand sanitization was required. Out of an abundance of caution, we decided not to hold our hugely popular Christmas barbecue and picnic in 2020 and 2021. This year, our Ecumenical Remembrance Service took place on Friday November 26; it was also professionally live-streamed so members could join in online. One unexpected consequence of WAs lockdown was the increase of tourism to the toxic site of the former asbestos mine in Wittenoom. The ADSA has mounted a coordinated and high-profile campaign to warn that visits to Wittenoom could prove fatal.7
Melita Markey speaking at the November 26, 2021 Ecumenical Service in Perth.
ADSA Advertisement warning of the hazards of visiting Wittenoom.
What is clear from the feedback reported above is that asbestos victims groups in Asia, Latin America, Europe and Australia remain committed to their core mission of supporting the injured throughout the Covid-19 pandemic despite the additional challenges that emerge. Thanks to these efforts, the isolation of already marginalized members of affected communities is minimized and the human contact, so vital to us all, provides the reassurance and solace needed to bring relief during the very dark days of lockdown and restrictions. The humanitarian work of all of the groups named and others carrying out this work has been of the highest order.
December 14, 2021
1 The research for this article was commenced prior to the discovery of the Omicron variant. The activities and plans of the groups interviewed may have changed in light of new developments.
2 Kazan-Allen, L. Brazilian Success: Pioneering Medical Program to Expand! October 20, 2021.
Kazan-Allen, L. Glimmers of Hope 2020. December 22, 2020.
3 Interview with Fernanda Giannasi, November 19, 2021.
According to Ms. Giannasi: In the States of São Paulo and Rio de Janeiro, the provision of medical services for patients with asbestos-related diseases was prioritized so no backlog in treatment built up during the pandemic; unfortunately, this was not the case in other States.
4 Interview with Sugio Furuya. November 24, 2021.
Also see: News of asbestos developments in Japan.
Also see: Kazan-Allen, L. Historic Victory for Japans Asbestos Victims. May 20, 2021.
5 Interview with Yeyong Choi, BANKO, Korea. November 24, 2021.
Also see: News of asbestos developments in Korea.
6 Pivetta, F.R. Le Cure Palliative al tempo del Covid-19, Degiovanni: Il virus ha capovolto il modo di vivere il nostro lavoro [Palliative Care at the time of Covid-19, Degiovanni: The virus has transformed the way we work]. November 23, 2020.
7 Email from Melita Markey, November 17, 2021.