Further asbestos updates
Published by MAC on 2004-09-22Further asbestos updates
Following opposition from Canada and Russia white asbestos (chrysotile) has been excluded from the latest list of restricted chemicals under the Rotterdam Convention. Meanwhile, workers poisoned by asbestos continue fighting for compensation - in Canada, the US and Brazil, while doctors in the UK urgently debate how best to combat the world's deadliest industrial disease.
Canada blocks asbestos type from global toxic list
PlanetArk (USA), story by Cyrille Cartier
September 22, 2004
Washington - Canada has blocked the addition of a carcinogenic type of asbestos to a global list of toxic chemicals, a move that environmentalists said this week could undermine efforts to protect people and the environment.
Fourteen other chemicals were added this week to the Rotterdam Convention's list of 37 which requires exporting countries to warn potential buyers about their toxicity and advise them on safe usage. However, chrysotile asbestos, which was blocked on Saturday, is the first chemical whose proposed addition to the list has run into opposition.
Chrysotile, or white asbestos, is one of three types of asbestos that research shows is carcinogenic.
"If they rejected chrysotile, just think what the future has to hold in terms of other problem chemicals where there are commercial interests still at stake," said Clifton Curtis, the Washington, D.C.-based director of WWFs Global Toxics Program.
"Chrysotile unequivocally meets the Rotterdam Conventions requirements, and those governments opposing its listing blatantly disregarded the treaty obligation," said Curtis, who is attending the week-long Rotterdam Convention conference in Geneva.
Chemicals must have been banned or severely restricted in two regions of the world before they are considered for the list. There must then be a unanimous decision to add the chemical to the list, a move that requires exporting countries to inform potential buyers about the toxic chemical in order to get their consent. If the importing countries do not respond within about 18 months, trade can proceed.
The other two carcinogenic types of asbestos - blue and brown asbestos - are both on the Prior Informed Consent list.
Russia was the top producer of chrysotile in 2003, producing 878,000 tonnes, followed by Kazakhstan, China, Canada and Brazil.
Canada, which produced about 240,000 tonnes in 2003, tends to export most of its asbestos, said Laurie Kazan-Allen, founder and coordinator of the British-based International Ban Asbestos Secretariat.
Bernard Mada, director of chemicals control in the Canadian government's Environment Canada, said his government was concerned about misconceptions surrounding the convention.
"If added to (the list), that might be perceived by some countries as a signal to ban chrysotile," he said.
Canada, the only producing country of the top five to have ratified the Rotterdam Convention, once provided 35 percent of the world's asbestos, but now only three mines operating part-time provide about 5 percent, said Raynald Para, president of the Canadian PRO Chrysotile Movement. Adding asbestos to the list would be like putting a ban on asbestos and further threaten the livelihood of about 1,200 people, Paac said.
Australia, Chile, the European Union and the United States are among the places to have banned domestic use of the chemical. The European Union exports only the asbestos it recovers from structures, and it requires consent of the buyers, said Klaus Berend, deputy head of the European Union's biotechnology and pesticides unit.
"This treaty is not about bans," said Carl Smith, vice president of the US-based Foundation for Advancements in Science and Education. "What it's about is information exchange, (and) if we can't even meet the standard of information exchange, we're in trouble."
MPP, union want change for workers
By Heather Spadafore, Local News (Ontario)
September 15, 2004
Since 2001, 1,980 people have died of work-related cancer.
MPP Gilles Bisson (NDP-Timmins-James Bay), who once worked at the McIntyre Mine as an underground electrician, has witnessed the problem first hand.
“My observations when I worked there in the late ‘70s and early ‘80s were that a whole bunch of men were breathing ventolin puffers,” Bisson said.
“It struck me back then as something odd.”
Bisson, along with victims, survivors and union representatives made presentations to the Occupational Disease Panel today at the Days Inn.
The hearing was also a chance to discuss putting occupational disease into the Workplace Safety and Insurance Act (WSIA) and developing policies for compensating occupational disease claims.
Judy Smith, president of Local 32 of the Communication, Energy and Paperworkers (CEP) Union said the changes are necessary.
“In the past, we’ve had members working with equipment covered with asbestos,” Smith said. “These workers had no personal protection equipment, except for hard hats and safety boots. Several years later, some suffered from breathing diseases, such as emphysema.”
Smith and Bisson both expressed concern on where the new panel was heading.
Currently, it takes an average of 20 years before a compensation claim is settled, if at all. A worker also needs to provide scientific evidence to support their claim.
“The draft report does not offer changes,” Smith said. “The burden of proof sits squarely on the workers. In many instances, the workers themselves are unable to supply information from decades earlier.”
She said when a worker files the compensation claim, they must face the board’s tough criteria.
“We find that worker’s statements carry little weight with the board,” Smith said. “It is no wonder there are 1,800 claims per year that go unrecognized.”
After meeting with the local union leader, Smith and Bisson began looking closely at the relationship between the workplace and the diseases that had been contracted over the years.
“It was a very long process, and it took about five years,” Bisson said.
He said it was then he knew the public would play a big role in helping those afflicted by occupational diseases.
“Unless the public knows about what’s happening within the workplace when it comes to industrial disease, nothing will happen. This story is one that needs to be talked out in public.”
Part of the problem, he said, is that occupational disease is very different from hurting yourself at work on a piece of equipment.
“Industrial disease takes time in order to develop itself, and far too often, by the time it is diagnosed as a natural disease, that person may not be in the workplace anymore.”
WTC lawsuit calms Amec frenzy
The Guardian
September 15, 2004
The share price of Amec, the construction company which has recently been the subject of frenzied takeover talk, came off the boil yesterday after it was named in a multibillion dollar lawsuit launched by workers involved in the clean-up of the World Trade Centre.
The suit, which was filed in a US federal court on Friday, alleges that Amec and three other construction companies brought in by the US government to clear 1.5m tonnes of debris from the site in Manhattan did little to protect workers from airborne dust, asbestos and other toxins.
It is seeking compensation for injured workers in addition to a system to track the health of everyone who worked at the site for the next 20 years.
A spokesman for Amec said the firm had yet to receive the claim, but added that the company was confident it was covered by a specific insurance policy set up by the US government.
This is believed to cover claims of up to $1bn (£550m) and was put in place before the clear-up operation got under way to cover future compensation claims from workers.
Analysts said news of the lawsuit would probably put paid to the takeover speculation. "Who is going to bid with this hanging over the company," one said.
That did not prevent City speculators from buying more Amec stock towards the close of business yesterday. The gossip in the Square Mile is that US rival Fluor has requested meetings with two of Amec's biggest shareholders, Toscafund and Fidelity, on Friday to see if they would be prepared to back a 400p-a-share bid.
Fighting for Asbestos Justice in Brazil - An Interview with Fernanda Giannasi
Multinational Monitor Washington DC
April 2003
Fernanda Giannasi is inspector for the Brazilian Ministry of Labor, and a leader both in the Brazilian and international movements to ban asbestos. A civil engineer by training, she has been a labor inspector since 1983, and has been active in organizing asbestos victims groups. Giannasi has campaigned against double standards by foreign auto manufacturing corporations using asbestos in Brazil in ways they do not in Europe and North America, and against the remaining European multinational corporation in the asbestos mining and manufacturing sector in Brazil, the French firm Saint-Gobain. Saint-Gobain has left the asbestos business in France, and under pressure from Giannasi and others, is, years later, on the verge of selling its asbestos mining interests in Brazil. Saint-Gobain responded to pressure from Giannasi by filing a criminal defamation suit against her. Unions and public health advocates worldwide launched an international solidarity campaign on her behalf; a Brazilian criminal court dismissed the charges against her in December 2002.
In the poorest areas, almost all homes have asbestos-cement tanks and corrugated sheets in the roofs. It is still the cheapest option for poor people, especially living in favelas (shantytowns).
Multinational Monitor: How prevalent is the use of asbestos in Brazil and Latin America?
Fernanda Giannasi: Asbestos is still used in Brazil and Latin America, though Argentina and Chile and some states in Brazil have passed laws to ban asbestos.
In Brazil, around 60 percent of houses are covered by asbestos-cement corrugated sheets/tiles and currently around 50 percent of these buildings have asbestos-cement tanks to store water for human consumption. In the early 1990s, 90 percent of homes had these tanks. In the poorest areas, the percentages are higher, with almost all homes having asbestos-cement tanks and corrugated sheets in the roofs. It is still the cheapest option for poor people, especially living in favelas (shantytowns).
MM: What is the disease toll from this use of asbestos? Who are the victims?
Giannasi: There are no official statistics nor a national register of asbestos-related diseases. But since I started to organize victims from Eternit and Brasilit companies, both owned by the French multinational Saint-Gobain, the companies have already paid very small amounts of compensation to 2,000 victims.
More than 500 ex-workers refused to accept the miserable compensation offered by companies, and are resisting in the courts, eight years after their attorneys first filed lawsuits. Some of them have already died.
The tip of this iceberg so far is the 2,500 asbestos victims. They are mainly ex-workers at the factories who received occupational exposures, although we do already have cases of contamination of the wives and children of asbestos workers and of residents of areas bordering asbestos mines and asbestos plants.
But these indirect or environmental exposure cases are still few in number because we have many difficulties finding these people. There is as yet no epidemiological follow up in Brazil of ordinary people who have lived near asbestos facilities.
The other problem is the lack of unbiased information available to the public and the unavailability to the general population of specialized medical care services for diagnosis of asbestos-related diseases.
According to the International Labor Organization, in developing countries less than 10 percent of low-income workers have access to such medical care services.
In my opinion, Brazil’s asbestos-related disease peak will occur between 2005 and 2015, because the boom period for production and utilization of asbestos products was in the 1970s, during the so-called “Economic Miracle” of the military dictatorship.
MM: What kind of healthcare and compensation, if any, do the victims receive?
Giannasi: In Brazil, the compensation offered by the companies is roughly $1,500, $3,000 or $4,500, depending on the seriousness of the case. This is ridiculously low, but some victims accept it because of their desperate need for money, the need to address their disability and their distrust of the judicial system.
Along with this “compensation,” the companies also offer a medical care service which they own. That helps guarantee the invisibility of asbestos-related disease and to prevent official recognition of the disease toll, so that the companies can maintain their public image and avoid liabilities.
The companies had profits when the workers were healthy, and now they are trying to continue earning profits when they are sick.
MM: What are the asbestos multinationals in Brazil and elsewhere in Latin America?
Giannasi: The biggest asbestos company operating in Brazil is the French multinational group Saint-Gobain that owns a mine (the mine-owning subsidiary was formerly known as SAMA S.A. Mineração de Amianto; nowadays it is called Eternit S.A.), controls the distribution of the raw material and also the asbestos-cement subsidiaries Eternit (formerly a Swiss branch of Eternit), Brasilit, Eterbras (a joint-venture between Eternit and Brasilit), Wagner and Precon Goiás.
In Latin America, Eternit is present in several countries, including Peru, Chile, Ecuador and Uruguay, through the subsidiary called Etex of the Belgium branch of Eternit. While the Belgium group Etex is gradually replacing asbestos with polyvinyl alcohol and cellulose fibers, Eternit linked to the French group Saint-Gobain continues to run the asbestos mine and two asbestos-cement plants in Brazil.
There is also an Austrian multinational group, Richard Klinger Company, that produces asbestos paper used for gaskets, ring gaskets, and for industrial and automotive uses. Its operations in Brazil and Argentina still use asbestos.
MM: What has happened when the multinationals have pulled out? Have domestic firms taken their place?
Giannasi: As they pull out, yes, the domestic firms will take their place. Legally, the domestic firms will be responsible for the liabilities of the former multinational subsidiaries. However, they cannot afford to pay, given the scale of financial resources needed. They probably will end up offering very small compensation to victims.
I am afraid of an idea that the current asbestos mining workers should create a cooperative to control the mining activities when Saint-Gobain will announce officially that it is selling Eternit’s shares. This “autogestion” (management by the firm’s workers) has frequently been practiced in Brazil, especially for companies in bankruptcy as a means to pay part of their debts to their employees.
In the asbestos mining case, I am totally against this kind of business managed by the workers, especially because they will not be able to afford any environmental or occupational controls. It would be a disaster for our movement politically, because it will be almost impossible to fight against “workers” in charge of a small business.
My feeling is that they are in hurry to sell the company to domestic owners. This will be announced officially at the end of April, according to information I’ve received from a French journalist.
MM: You were sued by an asbestos manufacturer, Saint-Gobain, for criminal defamation.Why did they sue you?
Giannasi: They sued me through their subsidiary Eternit, which is the “poisonous” part of their business, at a criminal court. As I mentioned before, Saint-Gobain is planning to sell its holding in Eternit so that they can present themselves as a responsible corporation.
They sued me because I referred to them as the “Mafia of Asbestos” in an e-mail I spread denouncing their attempts to blackmail former workers into accepting a ridiculous extrajudicial agreement. They told the workers that if they didn’t accept the terms of the agreement, and renounce further civil actions, the company would use its prestige and economic power to frustrate/dismiss all the lawsuits filed in the court.
In my e-mail, I denounced them also for their practice of coopting civil servants: labor inspectors working like advisers for them in Brazil and France, and public university researchers doing research to “prove” that Brazilian asbestos is not harmful to health. These researchers also evaluated workers for the extrajudicial agreement to see if they had the “right” to receive approximately $1,500, $3,000 or $4,500 in compensation. They classified the workers’ incapacity and disabilities to determine payment.
MM: How was the case resolved?
Giannasi: The case was dismissed thanks to a major international mobilization and pressure through thousands of letters, faxes and e-mails sent to the judge in the case from all the parts of the world, from many different NGOs [nongovernmental organizations], from other governments (including the British House of Commons, and the Italian and French Embassies), and unions, as well as extensive media coverage.
It was almost unimaginable that the judge would resist all of this pressure.
Finally, he rejected the accusation that I defamed the company’s honor. He based his decision on principles of freedom of speech and the UN Universal Declaration of Human Rights, and stated that the companies didn’t suffer any damages.
MM: Brazil is an asbestos producer. Does it export asbestos?
Giannasi: Brazil is the world’s fourth largest asbestos producer. It exports 35 percent of its annual production around 200,000 tons to more than 25 countries, including India, Japan, Thailand, Indonesia, United Arab Emirates, Nigeria, Mexico, Colombia and Ecuador.
MM: What are regulations concerning use of asbestos in Brazil?
Giannasi: Brazil was one of the first countries to ratify International Labor Organization (ILO) Convention 162 regarding “safety in the use of asbestos.” It ratified this convention in 1990. In 1991, the Labor Ministry approved the regulation to include implementation of the ILO Asbestos Convention as part of our duties at the Labor Inspection Department.
When we tried to pass a law to ban asbestos in 1993, the federal government pushed by the corporations approved Law 9055/95 and Decree 2350/97 to guarantee the “controlled use of chrysotile” (white asbestos, often misleadingly claimed to be safe). These rules remain on the books.
MM: Can you describe the campaign to get asbestos banned in Sao Paulo?
Giannasi: Our victims and the ban asbestos network have worked since 1995 to give visibility to the problem of asbestos-related diseases. We started campaigning for medical examination in asbestos-exposed people. We started a strong campaign producing pamphlets and booklets for the public, to increase awareness of asbestos risks. At the same time, we started campaigning in local, regional and the national legislatures, asking the Workers Party (PT) deputies mostly sympathetic former unionists to present bills at the municipal and state level, and to push for public hearings in the council of cities and states. In these public hearings, we were able to talk to thousands of people.
We have now approved 17 laws banning asbestos at the municipal and state levels and had more than 40 such laws debated in different parts of the country.
MM: How does the domestic production of asbestos affect efforts to regulate it in Brazil?
Giannasi: The state where mining operations are located (Goiás) lobbies against the ban of asbestos. Everyone from ultra leftists to the ultra right-wing parties from the state joins together to defend asbestos at the National Congress. Asbestos is the second major revenue source for the State of Goiás. The governor of Goiás, a young, ambitious and prestigious politician, uses his image to defend asbestos and the economic interests of his state.
MM: What are regulations on use of asbestos in Latin America? Are these regulations effective?
Giannasi: Chile (Regulation 656/2001) and Argentina (Resolution 823/2001) have already passed laws to ban asbestos. In other countries like Peru, a strong debate to pass similar laws, pushed by the victims association, is under way. In Nicaragua, the victims are just starting to organize themselves.
To me, the most serious problem in Latin America is the social invisibility of asbestos-related diseases and the lack of support to asbestos victims groups by the unions and politicians. The unions are worried about unemployment and the politicians are quiet because of their political and financial interests.
In general, the majority of Latin American countries have ratified ILO Convention 162 on asbestos.
But, in general, the implementation laws are not applied or enforced. The legal instruments are weak, state inspections are poor and there is little transparency in enforcement.
The weak state of social movements to ban asbestos (outside of Brazil, Chile, Peru, Nicaragua) exacerbates the problem, as does the lack of media coverage and unbiased information on asbestos accessible to the general population.
The invisibility of asbestos-related diseases in Latin America gives the false impression (used as propaganda by the industry) that our chrysotile (white asbestos) is not dangerous and that our “controlled use” is safe and responsible, different from the way it was long used in Europe and the United States. This may sound like a joke, but these arguments are repeatedly used by industry lobbyists.
MM: How have multinational and domestic companies lobbied on the issue?
Giannasi: They have intimidated campaigners and threatened us with lawsuits. They have tried to portray us as radicals, fanatics, environmental fundamentalists.
They have used their economic power to influence politicians not to approve asbestos bans, to encourage judges not to award fair compensation to victims, and to work the media to present ambiguous information, showing the “two sides” of the asbestos controversy.
Very importantly, they have blackmailed workers and unionists to choose to work with asbestos or face unemployment.
They provide lots of guided tours at the mine and asbestos-cement plants (asbestours), to attract journalists, politicians and policy makers, students and others to show how organized and clean are their plants.
They started in 1997 to offer barbecue parties for the victims in Brazil and their families, began providing Christmas baskets, and re-opened in Osasco the former employees’ club for social activities.
MM: Who are the major users of asbestos in Brazil and Latin America? Have you asked them to stop using asbestos?
Giannasi: The asbestos-cement industries are the major users. They have given different answers to our requests that they stop using asbestos. Brasilit says they stopped using asbestos in their plants in January 2003. Eternit says that market demand determines their production and if and when they will stop using asbestos. Both are part of the Saint-Gobain Group.
Eterbras, their joint venture, confirmed that they stopped using asbestos for Brasilit’s products but they are still producing for the other partner, Eternit. In the same plant you have the two lines: one with asbestos and one asbestos free, depending on which trademark they are going to print on the products.
MM: What do you think are the prospects for a global ban on use of asbestos?
Giannasi: In general, the multinationals are going to stop using asbestos in the next couple years because of global market demands and the shareholders’ concerns about future liabilities.
Meanwhile, the producer countries in the developing world, like Brazil, Zimbabwe and India, are going to take national control of the asbestos interests, transferring these interests to small companies which in general are free from any social and legal controls. They are going to produce for the national market without suffering in the international global market or feeling social pressure.
Of course, there will still be attention devoted to the issue, but it will not be like it is now, with an international effort and campaign pushing the companies daily to replace asbestos.
To deal with these changing circumstances, we need even more to empower the grassroots and the asbestos victims associations to continue pushing for the ban of asbestos immediately, as well as ongoing support from the international community and campaigners.
We need a strong alliance to keep the ban asbestos movement alive and not allow new “national” companies to be created to use the old technology.
We have to denounce these developments in international tribunals for human rights and other similar fora, demanding the ban of asbestos and also fair compensation for all the victims in the world.
MM: What are the major forces blocking such a ban?
Giannasi: In my country, these are the politicians from the mining state (they lost power in the last election), small Brazilian companies and the mine workers union.
On the other hand, because of the results of the last election in Brazil where the Workers Party took the presidency and became one of the strongest political forces in my country, one of the more supportive parliamentarians, João Paulo Cunha, became president of the High Federal Chamber of the Deputies.
João Paulo Cunha is from Osasco, the city where Eternit had its biggest asbestos-cement plant for 54 years. In the past, he has defended and supported all the bills to ban asbestos in the whole country.
I am strongly convinced that another world is possible without asbestos. Whether we achieve that depends only on our commitment and pressure joining all the social and political forces to outlaw asbestos the industrial killer of the twentieth century.
'We can't leave them to suffer alone'
Thousands of Britons are dying of a lung disease that has been largely ignored. James Meikle on the extreme surgery that may be the best way to treat a secret epidemic
The Guardian
September 16, 2004
There is a hidden killer out there. It will end the lives of more than 2,000 Britons a year in a terrible, painful way - and you may be only metres away from the cause, even as you read this.
It is called mesothelioma. For sufferers, it is a death sentence. But compared with diseases such as breast cancer, there is little in the way of public campaigning over the condition, or more than fractional funding of research into it. Now, surgeons are divided over a radical new solution, soon to be trialled. But it has raised an ethical question: is it better to conduct a major operation, which might lengthen life but risks killing the patient, or is it better just to ease the patient's passage to the grave?
The only certainty is the cause: asbestos. A mineral once seen as a natural wonder for its insulation and fireproof qualities, the stuff is everywhere in Britain: in our homes, schools, hospitals, workplaces. Properly sealed, it should be harmless, but if fibres become airborne and are then inhaled, the results can be disastrous. Asbestos is banned now, but more than 500,000 non-domestic buildings still have it.
The warning from cancer experts is that 100,000 people in the developed world will die a painful death, lungs constricted by an ever hardening lining. The symptoms (trouble breathing, unexplained chest pain), will have only started a few months before, but the tiny beginnings may have been laid 15, 25, even 50 years before. Exposure is usually occupational, in shipyards or building. But, increasingly, there are DIY casualties, or relatives who inhaled fibres while washing clothes.
The trouble is, no one is quite sure how mesothelioma develops. It may start when an inhaled fibre penetrates through to the mesothelial cells of the lung lining - known as the pleura. Macrophages, a type of immune cell, attack the inflamed tissue. Unfortunately, they are ill-equipped to deal with the fibre: they get damaged and spit the asbestos out. This process also damages the mesothelial cells of the pleura, which can start dividing uncontrollably and develop into a tumour pressing down on the lung. It's different to asbestosis - a better-known lung condition which comes from years of exposure.
For mesothelioma theoretically one fibre inhaled is enough to cause the damage. Blue and brown asbestos is thought to be the most dangerous, although white has also been linked. By 2015 to 2020, some 2,000 people in this country will be dying annually from mesothelioma, say specialists. In contrast, the Health and Safety Executive thinks that the peak may come earlier and be nearer 2,500. Other countries are expecting rising deaths, although the US may be past the peak because of earlier action against asbestos. In the developing world, where imports continue, the prognosis is grim.
David Waller, of Glenfield hospital, Leicester, says patients do not get referred to specialists such as himself be cause they are originally seen by non-surgeons, doctors who hold to "the generally held belief ... that this condition is untreatable". He adds: "Patients have been told by physicians in good faith, but in ignorance really, that nothing can be done for them."
The debate among the few doctors who specialise in mesothelioma is split between those who believe in radical surgery and those who favour more conservative options. The radical operation, extrapleural pnuemonectomy, involves removing the damaged lung and much that surrounds it.
Interest has surged, not least in patients informed by the internet, because of the work in the late 1990s of a Boston surgeon, David Sugarbaker. He reported survival figures of up to 48% at five years. Waller is a lead investigator in a pilot study, involving 50 patients, to be launched this autumn to assess the surgery. It will ultimately involve about 700 patients across Europe. Few surgeons in Britain now perform the operation. "I must probably do 70% of all the major operations for this condition," says Waller.
The surgery takes about three hours. Most tumours seem to be on the right side so the breast bone is split down the middle, and the whole lung is removed with its lining, the sac round the heart (the pericardium) and the diaphragm - the muscle between the lung and the abdomen. That is replaced with a prosthetic patch, as is the pericardium.
In the trial, patients will be randomised into receiving the surgery, chemotherapy and radiotherapy, or more minor surgery, chemotherapy and less radiotherapy. "The problem is going to be convincing patients to agree to be randomised. Some patients will have a clear idea they want surgery," he says. "We are not gung-ho. We turn down more patients than we operate on ... I tell them I can't cure them, right up front, because some of them come with unrealistic aspirations - that it is some kind of miracle surgery we are offering. It will come back in areas of the body I can't control by surgery. But our longest survivor is coming to four years from surgery, so we can offer a period of borrowed time they would not have otherwise, with a relatively good quality of life.
"I tell them to go and make the best of that time, and we have patients doing just that. They have cashed in insurance policies, and gone away to enjoy the last three or four years of their life rather than be told nothing can be done, they have to sit at home and wait for the grim reaper. I have a chap who climbed a mountain since he had his operation."
In a study Waller made of patients who did not have radical surgery, the average survival between diagnosis and death was six months "and, don't forget, that is not six months and then die suddenly but with a terminal phase of three to four months in pain, being slowly asphyxiated".
Others, however, are less enthusiastic about the operation. Andrew Ritchie, a surgeon at Papworth hospital, Cambridge, hopes to involve patients in the trials but says the results might not prove anything and that it will take years. "It is a big operation for which initial mortality was very high although over the last five to 10 years that has come down to more reasonable levels. But you always need chemotherapy and radiotherapy, too. It cannot clear the whole tumour out ... It is only suitable, if at all, for highly selected early-stage patients. Most are at late stage, frail and elderly and are no way ever going to be fit enough for an operation like that."
Ritchie says presentation does not always take decades. He has seen patients who have been exposed to asbestos only a few years before. "Making a diagnosis is extremely difficult even when a pathologist has tissue under a microscope. You can have benign conditions which cause excessive fluid in the lung cavity, causing shortness of breath. Other diseases are infectious. You don't want to give a patient a wrong terminal prognosis."
The palliative surgery he promotes offers an alternative to procedures dealing with fluid around the lung. Cells in a healthy lining produce small amounts of lubricant so the lung can expand during breathing without it catching on the chest wall. Disease causes either an overproduction of the fluid or stops it recycling as it becomes "a pleural effusion". The problem is common in mesothelioma, though not unique to it. "Tapping the fluid off by inserting a needle through the chest wall can give immediate relief but fluid rapidly accumulates once more," says Ritchie. Patients need repeated trips to hospital, and the treatment might actually help spread the tumour and introduce bacterial infection.
Doctors have tried to beat this problem by infusing talc in the hope that it can "stick" the lung up to the chest wall, but this too rarely works because the lung is bound by the tumour.
Ritchie devised a keyhole operation that is now to be measured in trials against the talc procedure. This is designed to deal with fluid and get the lung moving once more. It also removes parts of the tumour. He says this can be done in one hospital visit and is "suitable for the vast majority of patients who are elderly, frail and sick". "Patients live on average for 18-22 months when they would expect to die in four to nine months."
But it is extremely difficult to tell what stage of the disease patients are at, even after mesothelioma is diagnosed. All the patients involved in the keyhole procedure are "clearly pretty near the end of their journey", whereas those undergoing more radical surgery cannot be reliably placed, he says.
As the debate about surgery continues, national trials involving different types of chemotherapy are also under way. The received wisdom has been that none is very effective, but the newest arrival is not even involved in the comparative tests, partly because there was little known about it when the trials were prepared.
Pemextred, made by Eli Lilly with the brand name Alimpta, is licensed in the US and the company hopes to introduce it in Europe soon. Hopes have been raised for its use in conjunction with an existing treatment, and patients here already receive it on compassionate grounds.
Hilary Calvert, professor of medical oncology at Newcastle University and a consultant at Newcastle general hospital, was involved in a trial. Of the 25 who completed the study, eight responded to treatment with a large reduction in size of tumour. Of other patients who did not get 50% shrinkage, about 70% saw improvement in symptoms, less pain and improved breathing. Calvert has now treated about 100 patients with the drug.
Eli Lilly found median survival time increased by about three months. "That does not sound much, but nothing else had increased median survival time at all," says Calvert. "Some patients on it will survive for quite a few years. We have one who has survived for four or five. For something that is meant to be a lethal disease, that is quite a good result."
The drug stops cells dividing and its biology may make it more powerful still. "It is an analogue for folic acid, essential for the dividing of cells. It may be that Alimpta might be drawn into mesothelioma cells more rapidly than other cells. The tumour says 'Oh good, folic acid. I need that' and then realises it is more like a Trojan horse."
Will these new attempts to treat the disease be enough? Ken O'Byrne, former head of the British Mesothelioma Interest Group, who now works at St James's hospital, Dublin, is scathing about the lack of research money poured into the disease compared with, say, breast cancer. "People think it will pass away. It has often been perceived as a disease of older working-class men and historically they tend not to get the best deal."
The asbestos sub-committee of the all-party Parliamentary group on occupational safety and health wants a national strategy, says John Battle, Labour MP for Leeds West.
"Ten years ago, we were all saying 'You have HIV or Aids, you die.' Now, not only can we extend life, we can mitigate the worst effects so people don't suffer appallingly. With mesothelioma, people die a terrible death in agony. We can't leave them to suffer alone."