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|ISSN 1470-8108||Issue 107||Summer 2018|
On July 6, 2018 the date of UK Action Mesothelioma Day the funeral took place of mesothelioma sufferer and ardent campaigner Vivienne Swain.1 Vivienne, a member of the Greater Manchester Asbestos Victims Support Group and a committed Mesowarrior, played an active role in efforts to raise awareness of the reality of living with this deadly cancer. On July 5, 2017, she spoke at an Asbestos Study Day in Manchester which was attended by asbestos victims, supporters and campaigners from Japan, Australia, Spain, Italy, Belgium and France. Vivienne eloquently detailed her personal battle with mesothelioma; she had been exposed to asbestos whilst washing her late husbands work clothes. After her presentation, many of the international guests were eager to make her acquaintance.2 There can be no starker reminder of the appalling nature of this disease than the news of her demise. Remembering Vivienne, Japanese campaigner Sugio Furuya, said:
Members of the delegation from the Japan Association of Mesothelioma and Asbestos-Related Disease Victims and their Families who attended the Asbestos Study Day in Manchester last year were saddened to hear the news about Vivian Swain. She made a strong impression on them when she spoke so passionately about her fight with mesothelioma. Although many of the problems she recounted were familiar, the way she recounted them with such passion and strength was striking. She brought clarity to the subject and gave a human face to this global epidemic. We were all very sorry to hear of her death.
Britains Asbestos Epidemic
Despite having banned asbestos in 1999, there are still thousands of British lives being lost to asbestos-related diseases every year; in fact, Britain has the highest asbestos-related disease and mesothelioma mortality rates in the world.3 According to Cancer Research UK: [British] mesothelioma mortality rates have increased by 887% since the early 1970s.4 The most recent Health and Safety Executive (HSE) mesothelioma mortality data were released in early July 2018 and provided confirmation that the countrys widespread and unregulated use of asbestos throughout the 20th century still constituted a health hazard not only to workers and but also to members of the public.5 In 2016, there were 2,595 deaths from mesothelioma, a 10% increase since 2010 (2,360) despite predictions that the national epidemic would peak at 2,040 per year by 2016. The reality of the situation is much graver than had been acknowledged by the authorities; the newly released HSE figures for 2016 are 27% worse than forecast.
With growing numbers of injured, the need for investment in better facilities, new protocols and improved treatment regimes is obvious. A report entitled: National Mesothelioma Audit published in June 2018 contained data gleaned from the study of 7,000+ English and Welsh patients with pleural and peritoneal mesothelioma between 2014 and 2016. The twenty-three page document is well laid out and user-friendly with headlined commentary and recommendation sections and informative graphics used to reinforce key findings. In her foreword, the reports clinical lead Dr. Susan Harden wrote:
The results show encouraging trends towards higher active treatment rates, staging and mesothelioma subtyping, although for some of our other audit measures national performance remains similar to previous years.
Although 51% of patients received active treatment including palliative chemotherapy, debulking surgery or palliative radiotherapy, after first-line chemotherapy, there is still no established second-line treatments for MPM (malignant pleural mesothelioma) and BTS (British Thoracic Society) guidelines recommend second-line clinical trials for all patients with good PS (performance status) above any other option. Better data collection, wider access to cancer nurse specialists, more input from lung cancer multi-disciplinary teams and the timely provision of high quality patient information are amongst the recommendations made.
Nursing staff are on the mesothelioma frontline and improvements in the highly specialized care required by the multiplicity of symptoms experienced by patients could deliver huge benefits. On June 20, 2018, Mesothelioma UK announced that a £25,000 (US $33,230) grant had been awarded to Dr. Catherine Henshall, Senior Nursing Research Fellow at Oxford Brookes University, for a project to improve follow-up care for mesothelioma patients to enable them to live well with their condition. Dr. Henshall will interview mesothelioma patients from three NHS Trusts to better understand patients experiences of follow-up care. Her findings will be used to improve future treatment protocols and ensure that new policies are evidence-based and patient-focused. A fortnight after news of this grant was broadcast, an article in Nursing Times reported findings from one of the first studies about the impact of specialist nurses on outcomes for cancer patients. Having analysed input from 100,000 lung cancer patients and 200 lung cancer specialist nurses, the researchers from the University of Nottingham and London South Bank University concluded that:
patients with lung cancer live longer, avoid unnecessary hospital admissions and cope better with treatment when cared for by specialist nurses many patients fared better if they received an assessment and care from a specialist nurse, especially if nurses started working with lung cancer patients as soon as they were diagnosed.6
Stimulating the Asbestos Cancer Discourse
The national mesothelioma dialogue has been transformed over recent years as a result of the hard work of asbestos victims groups, charities and campaigning bodies which have raised the profile of mesothelioma, generated political support and secured research funding from central government and private donors. On June 26, 2018, the annual Parliamentary Asbestos Seminar was held by the Asbestos Sub-Committee in the House of Commons.7 This event provided the opportunity for MPs to hear about asbestos issues in the UK and abroad from people on the frontline, including a mesothelioma victim, an eminent mesothelioma researcher, an environmental campaigner, a representative of the Asbestos in Schools Group, a barrister working with asbestos victims in India and one of the worlds leading ban asbestos activists: Fernanda Giannasi.
This years Action Mesothelioma Day (AMD), a calendar event which is traditionally observed on the first Friday in July, was on July 6; from reports received, it seems that an increasing number of activities at more diverse locations than ever before took place, with activities in England, Wales and Scotland and new initiatives designed to grab public attention such as a show garden for Mesothelioma UK at the RHS Hampton Court Palace Flower Show (July 3-8)8 and the lighting up of the Emirates Spinnaker Tower Portsmouth in blue to mark AMD.9The day before AMD, Veronique Fresnel-Robin completed her 15 hour 42 minute cross-Chanel swim to raise funds for mesothelioma research in memory of her father.10 Speaking to journalists upon her arrival in Wissant, in the Hauts-de-France region, she said she was: super happy. I had, she added a hard time, especially when the sea became rough, after being very quiet at first, but I managed! It seems that on land and on sea, the determination to conquer this deadly asbestos cancer knows no bounds.
The fact that AMD 2018 occurred one day after the National Health Service celebrated its 70th birthday did not go unmarked. The headline of a press release issued by the Merseyside Asbestos Victim Support Group (MAVS) on July 7, 2018 said it all: Asbestos Victims Support the NHS. Spokesperson John Flanagan, Support Officer for MAVS, commented:
Sufferers of this sinister disease know only too well through their bitter experience the value of the NHS especially after diagnosis with this insidious condition that the last thing on their mind should be cost of their care. Sufferers constantly tell us they have only praise and admiration for NHS staff and its supporting services.
Liverpools industrial asbestos legacy continues to decimate the population; more than 120 sufferers and family members attended the AMD event at the Liverpool Town Hall which was organized by the Merseyside and Cheshire Asbestos Victims Support Groups. The keynote speaker was Professor Sir Anthony Newman-Taylor, Professor of Occupational and Environmental Medicine, National Heart and Lung Institute, Imperial College, London and Chair of the Scientific Advisory Board of the National Centre for Mesothelioma Research.11 In Aberdeen a memorial service was held in Johnson Gardens by Clydeside Asbestos Action.12 In Hampshire, HASAG Asbestos Disease Support had a butterfly release followed by an information session addressed by Dr Jason Lester, Mesothelioma Clinical Nurse Specialist Anne Moylan, Solicitors Richard Hopgood and Guy Darlaston, and a buffet lunch, raffle and bake sale. The same day, members of the Derbyshire Asbestos Support Team planted a memorial tree at Grassmoor Country Park near Chesterfield with each branch representing a profession or trade condemned by their asbestos exposures.13
Celebrating its 10th anniversary, on July 6 the Asbestos Support Central England group heard a presentation from Project Worker Doug Jewell:
Asbestos Support Central England was launched in 2008; the year when the number of mesothelioma cases were supposed to peak. Yet in 2018 we will visit double the number of patients we visited in that first year. Our hope for this Action Mesothelioma Day is that ten years from now we will see the number of people diagnosed vastly reduced, that those who are diagnosed receive the best treatment available and that asbestos eradication is underway meaning future generations will not have to suffer.14
In Manchester, MPs including Kate Green (Stretford and Urmston, Greater Manchester), Lucy Powell (Manchester Central) and Ivan Lewis (Bury South) joined members of the Greater Manchester Asbestos Victims Support Group for a dove release, open air rally and public meeting. Politicians in other areas also took part in events including Mick Antoniw and Dawn Bowden, Members of the Welsh Assembly, who participated in the information session and dove release at the AMD event in Swansea held by Asbestos Awareness and Support Cymru.
In Darlington, the Paul Redhead Asbestos Support Awareness Group joined forces with the Mick Knighton Mesothelioma Research Fund and Mesothelioma UK for a public meeting and commemorative dove release. In Leeds, the June Hancock Mesothelioma Research Fund held its annual Meet the Researchers event while in Sheffield, a memorial service was held in the cathedral followed by a public meeting, recital by the Sheffield Social Choir and a buffet lunch organized by the South Yorkshire Asbestos Victim Support Group. At Leicester Cathedral, the 13th annual service of reflection and hope organized by Mesothelioma UK took place after which there was a dove release and refreshments were served.15 The Sunday before AMD, two hundred congregants had attended the second commemorative service at St. Edmundsbury Cathedral in Bury St Edmunds organized by the Anglia Asbestos Diseases Support Group and Mesothelioma UK.16 Following a service of reflection conducted by Bishop Graeme Knowles, there was a symbolic release of white doves in the Cloister Garden, followed by a poetry reading and musical interlude.
With so much activity on and around AMD, there are bound to be events that have been missed out; this is no reflection on the value of their contribution. Every effort made to raise the profile of the disease killing thousands of Britons is to be celebrated. When AMD started more than a decade ago, our numbers were few but the determination and imagination of mesothelioma campaigners has propelled this formerly obscure occupational health issue onto the national agenda. The mobilization of Britains asbestos victims, their relatives and supporters is on the rise; the fallen will be remembered and the fight will continue to ensure that those still suffering receive the medical services and financial support they deserve.
The annual Parliamentary Asbestos Seminar took place on June 26, 2018 in Committee Room 14 of the House of Commons towards the beginning of what will no doubt come to be known as the Great Heatwave of 2018. As always this event, held under the auspices of the Asbestos Sub-Committee of the All-party Group on Occupational Health and Safety, offered the opportunity for Members of Parliament to hear about a diverse range of global asbestos developments from those people working on the asbestos frontline.17 MPs in attendance included Jo Stevens, Chair of the Asbestos Sub-Committee, Labour Shadow Secretary of State for Work and Pensions Margaret Greenwood MP, London MP Stephen Timms (Labour), West Dunbartonshire MP Martin Docherty-Hughes (Scottish National Party), representatives of Bath MP Wera Hobhouse (Liberal Democrat) and others.18 Also in attendance were dozens of campaigners from asbestos victim support groups, asbestos charities, trade unions and non-governmental organizations from County Durham, South Yorkshire, Derbyshire, Kent, Glasgow, Birmingham, Liverpool, Manchester, Leicester, Rochdale, Cambridge and London. The widespread geographical representation of delegates was a reflection of the ubiquity of the challenges posed by Britains industrial asbestos legacy; the use of 7 million tonnes of asbestos during the 20th century has given Britain the highest mesothelioma rate in the world.19
During the two-hour session, information was provided regarding: challenges faced by UK asbestos cancer sufferers, progress being made by British mesothelioma researchers, asbestos legacy issues at brownfield sites, the campaign by the Asbestos in Schools Group and the tragic consequences of asbestos consumption in India. The keynote presentation was given by Retired Labor Inspector and Co-Founder of the Brazilian Association for the Asbestos-Exposed Fernanda Giannasi who explained how grassroots mobilization by asbestos victims overturned decades of industry control of the national asbestos dialogue. From being one of the worlds largest asbestos producers, consumers and exporters, Brazil is now embarking on a post-asbestos era as a result of a 2017 decision by the countrys Supreme Court.
As was usual, the first person scheduled to speak was someone with first-hand experience of mesothelioma: Dr. Mags Portman,20 a consultant at Mortimer Market Centre, Central & North West London NHS Foundation Trust, was diagnosed with mesothelioma in January 2017. Unfortunately, she was not well enough to take part in the seminar so delegated Liz Darlison, Head of Services for Mesothelioma UK, to give the presentation. As Liz was delayed in traffic, the first speaker was Sir Anthony Newman-Taylor, Professor of Occupational and Environmental Medicine, National Lung and Heart Institute, Imperial College and Chair of the Scientific Advisory Board of the National Centre for Mesothelioma Research (NCMR).21 His subject was: Understanding the Biology of Mesothelioma as the Basis for Effective Treatment. Research was progressing at the Centre into understanding mesothelioma as a basis for developing a treatment which could, in the long term, convert this fatal cancer into a manageable chronic condition. Scientists were currently looking to:
An area of great interest was the potential use of checkpoint inhibitors in mesothelioma treatments. Newman-Taylor explained that many tumor cells expressed PD-L1, a human protein that can suppress the immune system during particular events. If the operational capacity of PD-L1 could be blocked, then T-cell responses and other preclinical antitumor activity might be stimulated. The ultimate goal was to boost the immune system so the body was better able to destroy the mesothelioma cancer cells. NCMR personnel were working as part of an integrated team with scientists from the Institute for Cancer Research, the Royal Brompton Hospital, the National Heart and Lung Institute, the Royal Marsden Hospital, the Leicester Medical Research Council and the Royal Papworth Hospital on: DNA sequencing to find mutations, screening mesothelioma cells for responses to drugs, methods to accomplish early diagnoses of mesothelioma, new protocols for testing fluid for mutations and the potential exploitation of oncolytic viruses to kill mesothelioma cells.
The next presentation was given by Liz Darlison on behalf of Dr. Mags Portman, a medical consultant in her forties, a wife and mother of two young sons. With her busy family life and work schedule, it was many months before Dr. Portman took action on chest pains that began in the summer of 2015. After tests ordered by her GP, a possible diagnosis of mesothelioma was made on Friday, January 13, 2017. Despite a great response to the first cycle of chemotherapy she received at the Cancer Centre in Leeds and a lovely summer with my family, in early October (2017) the meso cough as she called it had returned. After second line chemotherapy with Vinorelbine did not succeed in stopping the disease progression, Dr. Portman began treatment with Pembrolizumab; although the results to date have not been encouraging, radiotherapy for pain relief, due to start soon, might prove beneficial.
To understand the causation of her illness, Dr. Portman began an investigation and was stunned to discover that there was no data on the number of healthcare professionals who had contracted mesothelioma, no estimates of how many UK hospitals or healthcare facilities were contaminated with asbestos and no publicly accessible information about the amount of compensation paid out by the NHS to hospital staff with asbestos-related diseases. In light of the commonplace breaches of asbestos health and safety regulations by hospitals she cited incidents at The Christie and the Royal Shrewsbury Hospitals there was an urgent need for: central government and/or NHS Improvement to supervise asbestos monitoring in healthcare facilities, asbestos awareness training for health care practitioners and the compilation of a centralized database listing occupations and other pertinent information self-reported by mesothelioma patients.
The issue of asbestos-contaminated land is a hot topic in post-industrial countries as developers look to build on brownfield sites. Local people in Spodden Valley, Rochdale have been engaged in a fifteen-year campaign to ensure that the site of the former Turner Brothers Asbestos factory the world's first and largest asbestos complex was scrutinised, tested and remediated in a transparent manner so that safe decisions could be made about its future. Spodden Valley campaigners had witnessed multiple attempts to downplay the occupational and public health risk posed by the contamination. Tens of thousands of tonnes of asbestos waste remained under the huge site, with soil and water contamination a potent threat to the health of people who lived or worked nearby. Photographs shown by Mr. Addy of child trespassers in the abandoned T&N asbestos factory caused gasps from members of the audience; as well as asbestos factory debris in the damaged premises, documents including workers medical files and Ministry of Defence files marked confidential were also present.
Speaking about the lessons learned by campaigners, Mr. Addy said:
There is an urgent need to preserve and protect documents and records relating to asbestos and asbestos campaigning. In recognition of the importance of this history, the Spodden Valley Trust an educational archive of legitimately obtained information in paper, audio visual and electronic format has been created. This archive is intended as an information resource to stand witness to public concerns about asbestos and to help ensure that those with responsibilities for contaminated sites can be held to account.
The keynote presentation was given by Fernanda Giannasi, Civil, Health and Safety Engineer, Retired Labour Inspector and Co-Founder of Associação Brasileira dos Expostos ao Amianto (ABREA) [Brazilian Association of the Asbestos-Exposed]. This was the second time Ms. Giannasi had spoken at the annual Parliamentary Asbestos Seminar; her first appearance was in 2002 when she had addressed the subject of: Asbestos Problems in the Developing World.22 Little could we have foreseen that 16 years later, she would return to tell Parliament how Brazil had broken free of its asbestos shackles through a combination of grassroots mobilization, legal activism and judicial actions. Although several of the countrys 26 states had acted unilaterally and banned the processing, use and sale of asbestos and goods containing it, it was a verdict by the countrys Supreme Court on November 29-30, 2017 which finally sounded the death knell for this formerly powerful industry. The Courts decision which declared the federal governments policy allowing the controlled use of asbestos unconstitutional was binding in all Brazilian states. On December 5, 2017, Eternit S.A., the countrys largest asbestos conglomerate and the owner of Brazils only operational chrysotile (white) asbestos mine, suspended mining operations and production at some, but not all, of its asbestos-cement factories which were now transitioning to asbestos-free production. On March 19, 2018 Eternit told the stock exchange that court agreement for a restructuring process had been sought to allow the companys survival in the light of adverse economic condition; in other words, Eternit filed for the Brazilian equivalent of Chapter 11 protection.
In 2004, asbestos-containing diaphragms were used for 72% of all chlorine production in Brazil. In 2018, Americas Dow Chemical Company is the largest chlorine producer in Brazil accounting for 26.5% of annual output and the only one still using asbestos technology. Dow challenged the new ban asbestos law in Bahia State in order to continue using asbestos diaphragms; on April 11, 2018 this challenge was overwhelmingly rejected by the Legislative Assembly of Bahia State. Despite public and judicial support for asbestos prohibitions, an injunction unilaterally issued on December 20, 2017 by Supreme Court Justice Rose Weber suspended the asbestos ban in states which had not yet enacted prohibitions until all appeals had run their course. Ms. Giannasi concluded her presentation by saying that the behaviour of the asbestos industry was always the same: capitalizing the profits and socializing the losses.
Two brief interventions rounded off the seminars program, with the first comments made by John McClean, head of the Asbestos in Schools Group (AiS). Progress was being made albeit slowly as a result of negotiations between the AiS and the Department of Educations (DfE) Asbestos Steering Group. The product of ongoing consultations included: guidance for schools, questionnaires and surveys designed to ascertain the state of asbestos in schools across England and Wales e.g. did they have asbestos management plans; had asbestos surveys been undertaken. As responses from schools regarding their asbestos policies were pending, the speaker pointed out that compliance with requests for information was voluntary. AiS believed that those schools which failed to respond should be sanctioned by the Health and Safety Executive (HSE); unwilling to go that far, the HSE had, however, agreed to undertalke a proactive pilot inspection of 50 schools this autumn.
The second intervention was by Krishnendu Mukherjee, a barrister from Doughty Street Chambers; he highlighted the devastating consequences of asbestos consumption in India, the worlds largest asbestos importing nation. A trailer the speaker screened for a new documentary called Breathless gave an overview of the environmental devastation caused by the operations of the Everest Industries Ltd. asbestos factory in Kymore, Madhya Pradesh State which had created an unauthorized dumpsite containing 600,000 square meters of asbestos waste.23 The plight of two Everest employees Arun Chakraborty and Goutam Sandar sacked in April 2018 for organizing a medical diagnosis camp to examine workers for asbestos-related diseases in Kolkata, West Bengal was the subject of a letter read out by the speaker which called for international support for the two trade union members.
Commenting on the event, Chair Jo Stevens said:
The seminar showed that, despite asbestos having been banned in Britain for almost 20 years there is still a huge problem out there. Millions of tons of asbestos are still in place in workplaces across the country and every year 5,000 people die prematurely because of past exposure.
Two things were very clear from the seminar. The first was the huge energy there is out there to make sure that these victims are supported, and this terrible killer fibre eradicated. The second is the need to support those who are fighting in other parts of the world against the asbestos industry to try to secure an asbestos-free world.
1 When Vivienne Swain washed her husband's overalls she never could have imagined fatal consequences. July 8, 2018.
2 Kazan-Allen L. Action Mesothelioma Day 2017.
3 Kazan-Allen L. Asbestos Life and Death in Brexit Brtain. British Asbestos Newsletter, Issue 105.Autumn 2017.
4 Cancer Research UK. Mesothelioma mortality statistics.
5 Health and Safety Executive. Mesothelioma in Great Britain. July 2018.
6 Ford, S. Now we have evidence specialist nurses make a difference where it matters. July 5, 2018.
7 For a report on that event, please see article 2: Parliamentary Asbestos Seminar 2018 in this issue of the newsletter.
8 On July 9, 2018, it was announced that the show garden designed by gardening broadcaster David Domoney for the charity Mesothelioma UK had received the most votes and as a result the organization would receive a £4,000 donation from Everest Home Improvements.
9 Blue is the color of the forget-me-not flowers which feature in the logo of Mesothelioma UK.
10 Virel B. Véronique Fresnel-Robin a réussi sa traversée de la Manche pour la recherche médicale [Véronique Fresnel-Robin has successfully crossed the Channel for medical research]. July 5, 2018
11 Website: National Centre for Mesothelioma Research.
12 Poignant service held in Aberdeen for those lost to asbestos-related illnesses. July 5, 2018.
13 Action Mesothelioma Day in the East Midlands. June 18, 2018.
14 Email from Doug Jewell to Laurie Kazan-Allen, July 7, 2018.
15 Service of reflection and hope to be held at Leicester Cathedral at 2pm on 6 July 2018.
16 Dove release to observe Action Mesothelioma Day in Bury St Edmunds. July 5, 2018.
17 The seminar scheduled for May 9, 2017 did not take place due to the closure of Parliament after the April 17, 2017 announcement of a snap election.
18 Stevens, Jo. House of Commons Asbestos Seminar. June 28, 2018.
19 Gilham C, Rake C, et al. Past and current asbestos exposure and future mesothelioma risks in Britain: The Inhaled Particles Study (TIPS). 2018
20 Its important to think life, not death.
22 Kazan-Allen. L. London Asbestos Meetings. April 2002
Compiled by Laurie Kazan-Allen