Mesothelioma: A National Tragedy 

by Laurie Kazan-Allen

 

 

Data released by the Health and Safety Executive (HSE) in May, 2003, confirm a seemingly inexorable rise in UK mesothelioma mortality. The number of male mesothelioma deaths increased nearly 300%, from 2,317 in 1980-1985 to 6,475 in 1996-2000. According to Damien McElvenny, a statistician in the Epidemiology and Medical Statistics Unit: "the highest risk occupations for males are those found within industries associated with heavy industrial use of asbestos in the past, for example shipbuilding, railway engineering and the insulation industry." A May 7, 2003 seminar in the House of Commons heard calls for the UK Government to adopt a coordinated multidisciplinary approach to this epidemic. The meeting: Asbestos Perspectives was held under the auspices of the Asbestos Sub-Committee of the All Party Parliamentary Group on Occupational Safety and Health and included contributions from sufferers, carers, victim support representatives, community workers, medical specialists, politicians and civil servants.

In his opening remarks, Chairperson Michael Clapham MP commented that the growth in the asbestos death rate demanded government action and national attention. For this reason, he announced, it had been decided to make the House of Commons Asbestos Seminar an annual event.


Michael Clapham MP

In the presentations and subsequent discussion, a range of problems and solutions were explored often by people with first-hand knowledge of the human cost of asbestos use.


Dr. Mike Wise

Dr. Mike Wise, a scientist who has contracted mesothelioma, was critical of the haphazard medical treatment received by sufferers in many parts of the country. A delay in being properly diagnosed can prevent early treatment which, as Dr. Wise has discovered, can significantly improve the quality of life. Based on his experience in Hull, Dr. Wise recommended that other regions adopt a similar approach in which chest specialists, oncologists, radiotherapists and surgeons work together. In addition, the availability of alternative therapies such as meditation and positive imaging can prove beneficial to mesothelioma patients. Dr. Wise explained the pivotal role played by specialist nurses in Hull; by acting as the interface between team members, the nurses ensure the system works smoothly. Dr. Wise, whose professional expertise lies in complex engineering systems, proposed that a team of ten specialists including mathematicians, physicists and medical personnel be convened to address UK research needs.

In the talk: Asbestos: The View from Westminster, Dr. Kit Harling, a consultant occupational physician representing the Department of Health, agreed that UK medical treatment for asbestos-related diseases is "not good".


Dr. Kit Harling

Within the medical community, a "high index of suspicion" is needed so that doctors, when encountering patients employed in high risk trades such as builders and plumbers, ask the right questions. Stressing the importance of prevention, Dr. Harling said that the new Control of Asbestos at Work Regulations (2002) imposed a "positive duty" on individuals and companies to manage asbestos safely. Despite the new law, exposures were still occurring and stricter enforcement was needed.

Drawing on four decades of experience with asbestos issues, Dr. Nancy Tait, of the Occupational and Environmental Diseases Association, highlighted recent developments in her talk: Asbestos Issues: The Community:

  • while legal aid is still available for clinical negligence cases, it is no longer available for asbestos personal injury cases;
  • although the Industrial Injuries Advisory Council reported that lung cancer could occur in the absence of asbestosis in 1982 and 1984, the Government ignored their advice; many medical experts and solicitors "are unwilling to support lung cancer cases;"
  • in 1995, the HSE issued warnings on the hazards of asbestos cement; in March, 2003, this material was referred to by the HSE as "normally low risk;"
  • government benefits can now be claimed by asbestos patients who experienced low level occupational or environmental exposure but "these benefits are denied to relatives who washed the asbestos workers' clothes, to families who lived in asbestos houses or flats or near asbestos factories or waste dumps, to a wife who cleared-up for a DIY husband and to those with pleural plaques."

Concerned about insurers' attempts to escape asbestos liabilities, solicitors' lack of expertise at inquests and medical appeal tribunals and the disenfranchisement of asbestos claimants, Dr. Tait concluded that much remains to be done.

In the presentation: Mesothelioma: Treatment and Research in the UK, Dr. Ken O'Byrne, Head of the British Mesothelioma Interest Group, said that in the midst of a "national mesothelioma disaster" little funding was available for work on this killer disease: "one hundred thousand people alive in the UK today will die from malignant mesothelioma."


Dr. Ken O'Byrne

Emphasizing the importance of early diagnosis and new treatment strategies, Dr. O'Byrne called for a well-funded "coordinated integrated approach to the research and treatment of mesothelioma."


Dr. Jeremy Steele

Supporting these views, Dr. Jeremy Steele, Consultant Medical Oncologist for Lung Cancer and Mesothelioma at St. Bartholomew's Hospital, London added that with state-of-the-art equipment and techniques, significant breakthroughs are achievable given adequate financial support.

News that the Australian Government is adopting a well-funded, centralized strategy for tackling its asbestos epidemic added a resonance to the discussion of the UK situation.


Dr. Greg Deleuil

In the keynote speech: Treatment and Research of Asbestos Diseases in Australia, Dr. Greg Deleuil, Medical Adviser to the Asbestos Diseases Society of Australia, described a decision taken last year (2002) to set up the (Australian) Asbestos Working Party "to identify research strategies aimed at reducing the incidence of asbestos-related cancer particularly mesothelioma, or curing these diseases." The budget for this program totals Aus$110 million over the next ten years. It is expected that this money will come from those with significant asbestos liabilities such as insurers, the national government and employers. The conditions which created the tragic legacy of disease and death in Australia were graphically shown by Dr. Deleuil with a breath-taking collection of photographs depicting the reality of life in an Australian asbestos mining town. Although the Wittenoom crocidolite (blue asbestos) mine was operational for only 23 years, it has produced an epidemic of asbestos disease in Western Australia amongst former workers, their families and town residents. Many young adults, who had lived in Wittenoom as children, have died from asbestos-related diseases in their 20s and 30s. A picture of race day in Wittenoom showed horses running on a blue track made from asbestos tailings. A photograph of children competing in sack races on the same track told its own story, while the image of men competing to fill 50 pound storage drums with asbestos tailings elicited gasps of disbelief; the 1st and 2nd prize winners and the judge of the asbestos shovelling contest have all died from asbestos-related disease. Within days of the seminar, Chairperson Michael Clapham wrote to MP Hazel Blears, Parliamentary Under-Secretary of State for the Department of Health, informing her of the event and requesting that "an evaluation is done of some of the new treatments available to victims in other countries with a view to developing a co-ordinated and integrated approach to research and treatment of UK victims." He asked that a meeting be set up so that patients, specialists, trade unionists and politicians could discuss the way forward.

In view of the scarcity of research funds in the UK, the work of a small charity: the June Hancock Mesothelioma Research Fund has been of real significance. Named after a remarkable Yorkshire woman who took on UK asbestos giant T&N plc and won a landmark victory for victims of environmental asbestos exposure, the Fund contributed 20,000 towards the costs of a pilot study (MESO-1), which has now been expanded to a national trial (MS01); claimed to be the first randomized malignant pleural mesothelioma trial comparing active symptom control (ASC) with ASC + chemotherapy in terms of survival and quality of life (newsletter issue 50).


Dr. Martin Muers

On June 18, 2003, Dr. Martin Muers, the principal investigator of MS01, acknowledged the assistance of the June Hancock Fund at a meeting at the Royal College of Physicians, London; 350 nurses, general practitioners, medical specialists and victim support representatives attended the event: The Management of Mesothelioma. The presence of a capacity crowd confirmed the view that interest in mesothelioma has risen exponentially amongst the medical community in recent years. The opportunity for leading UK epidemiologists, pathologists, clinical oncologists, radiologists, surgeons, researchers, physicians and patient representatives to discuss their work produced a lively and informative debate about current research and treatment alternatives. While there were differences of opinion over the optimal management of mesothelioma, there was a consensus that a "nihilistic attitude" towards the disease was outdated: according to Dr. Robin Rudd: "It is never appropriate to tell a (mesothelioma) patient there is no treatment - (at the very least) there is active symptom control and this is very important." While the ultimate aim remains a cure, the alleviation of debilitating symptoms such as breathlessness, pain and fatigue can vastly improve a patient's quality of life. The need for cooperation between specialists was a recurring theme. Describing his input as one of "accurate clinical assessment and diagnosis," chest physician Robert Milroy highlighted the importance of multidisciplinary cooperation in the designing of individualized management plans. Difficulties in accessing mesothelioma data were described by Clinical Nurse Specialist Erica Lowry from the West Anglian Cancer Network who explained that "no central data source for mesothelioma" existed. Outlining the range of available sources, she commented that the weirdest one was a shoe box in which one doctor kept various useful bits of information. Praising the pioneering work of Macmillan Nurse Mavis Robinson, who has now retired, Ms. Lowry was optimistic that the National Macmillan Mesothelioma Resource Center, Leicester would soon be operational. For information on this initiative, contact Liz Darlison (email: liz.darlison@uhl-tr.nhs.uk). The launch of information booklets: Understanding Mesothelioma and Understanding the Mesothelioma Treatment Trial (MS01), by Debbie Coats from Cancer BACUP brought the conference to a close. These and other publications can be obtained from the website: www.cancerbacup.org.uk or freephone 0808 800 1234.

While researchers look to the future, asbestos solicitors deal with events which took place decades ago. In Scotland, the traditional rules of court disadvantaged mesothelioma claimants, most of whom died before their cases were resolved. The introduction, therefore, of procedures to fast-track compensation claims for plaintiffs with terminal diseases was warmly welcomed by victim support groups, trade unions and politicians. Harry McClusky, the Secretary of Clydeside Action on Asbestos, says: "While it is still early days, we feel that the knowledge that judges will no longer tolerate delays in terminal cases has filtered through to defendants who now seem more willing to settle." The new rules, which came into effect as of April 1, 2003, include a timetable for managing individual claims which is strictly monitored with a view to completing litigation within one year; there are also provisions in the rules to make an application for a much earlier date where the pursuer is dying from mesothelioma. The scope for the introduction of third parties into actions has been restricted to 28 days after the lodging of defences. In addition, the Lord President has made provision for expediting qualifying cases which pre-date the new regulations by application to the Keeper of the Rolls for a By Order hearing. These changes appear in two Practice Notes issued by the Lord President; these documents, more flexible than Rules of Court, are an indication of the policy of the Court in its treatment of personal injury actions. "The Practice Note sets out the approach that the Court will expect practitioners to take when raising these actions and it indicates what the policy of the Court will be in considering them. It is therefore equally applicable in every case, regardless of the parties who are presenting the case or the judge who is hearing it." According to Solicitor Advocate Frank Maguire, of Thompsons' Solicitors, Glasgow, in the three months since these rules have been in place:

"We have taken a number of live mesothelioma cases forward. Last Wednesday, I appeared before the Court of Session and made an application for an earlier date for a hearing for a pursuer dying of mesothelioma. The Court granted the trial date I was seeking which was July 15th. The expectations that we have of the new rules were clearly met in this instance. We will be making further applications in other cases and will see what pattern emerges."

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June 30, 2003

 

 

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