My Lords, in moving the Second Reading of this Bill, I first thank all noble Lords who will speak today, others who have been in touch to indicate their support for a measure which enjoys all-party support and, in particular, the noble Lords, Lord Giddens and Lord Wills, who have given a great deal of their time in recent months as we have endeavoured to promote interest in research into a disease which, according to the Government, will claim a further 60,000 British lives over the next three decades. This represents the highest rate of mesothelioma anywhere in the world. I also thank Penny Woods and her team at the British Lung Foundation for their support for the Bill and the Minister the noble Lord, Lord Prior, and his officials for meeting with the noble Lord, Lord Giddens, and myself yesterday. My noble friend Lord Patel is among a number of noble Lords who cannot be here today but who wish to record their support for the Bill.
When your Lordships debated the causes and absence of cures for mesothelioma during the passage of the Mesothelioma Act 2014, my proposal to provide a statutory levy on the insurance industry to fund research was defeated by a slender margin of seven votes—199 to 192. When the same amendment was moved in the Commons, it was defeated by 266 to 226. Several noble Lords and Members of another place agreed entirely with the principle of insurance industry funding for mesothelioma research but expressed a preference for contributions to be secured on a voluntary basis. In both Houses, Ministers gave assurances that a new voluntary research regime would be established. At that time, just four out of 150 insurance companies were voluntary contributors. Far from stepping up to the plate, that number has been reduced to just two. It is to that issue that I return this morning.
Let me begin by saying something about the disease itself. Mesothelioma is an occupationally-related disease. It is an invasive type of lung cancer, primarily caused by prior exposure to asbestos. There is currently no cure. Patients often experience complex, debilitating symptoms and most die within 12 months of diagnosis. Simply put, men and women went to work and were negligently exposed to asbestos when it was known that asbestos caused great harm. As long ago as 1965, the Newhouse and Thompson report provided shocking evidence that a brief exposure to asbestos could result in mesothelioma 50 years after exposure yet scandalously, and with utter contempt for life and health, men and women continued to be exposed to asbestos with little or no protection for decades after that report was made public. Nearly 40,000 British people have died from mesothelioma from past exposures to asbestos and some 60,000 will die from it in the years to come. The UK has the highest incidence of mesothelioma worldwide. Society owes a great debt to those who went to work, often in hard and heavy industries, and built the economy of this country only to suffer terrible consequences.
Our partial and overdue response was the very welcome legislation promoted by the Government in 2014, and we must all continue to insist on proper and commensurate support for those families blighted by the curse of this disease. But surely our most important objective must be to find safe ways of eliminating the danger and to find cures for mesothelioma. Sometimes—and wrongly—it is dismissed as a legacy disease which will simply run its course, claiming about 2,500 lives every year. Despite that, the legacy will be with us in this country for at least 30 years. Neither here nor in other countries is this just a legacy disease. It is quite possible that comparable diseases will emerge from other environmental sources. I repeat that we have the highest rate of the disease in the world. Mortality rates are increasing and have more than quadrupled in the past 30 years. Last year, the Independent newspaper reported that fresh figures from the Health and Safety Executive showed a 10% increase in mesothelioma cases and that the number will continue to rise until at least 2020.
There is another mistaken belief that mesothelioma is a disease confined to the tunnellers, masons and manual workers whose cases I first came in contact with 30 years ago as a young Member of Parliament in Liverpool. This occupational disease affects people from diverse and, as we will learn in the course of this debate, unpredictable backgrounds. Members of your Lordships’ House have loved ones who have died of mesothelioma. One noble Lord described the death of his wife, a Minister described the death of his father and another noble Lord described how his sister died after washing the dungarees of her husband. The former First Sea Lord, the noble Lord, Lord West, who is involved in graduation ceremonies at his university in Southampton today but who supports the Bill, described how many of his cohort at Dartmouth had played snowballs with asbestos and how some had died of mesothelioma in later years. According to the London School of Hygiene & Tropical Medicine, more than 2,500 Royal Navy veterans will die from mesothelioma in the next three decades.
In parenthesis, let me say that the failure of the 2014 Act to include provision for compensation for our servicemen who die of mesothelioma is a glaring anomaly. The British Legion, the Royal Navy & Royal Marines Charity, the Royal Navy Royal Marines Widows’ Association, the Royal Naval Association and others all support calls for change. A 63 year-old civilian could expect to receive around £180,000 in compensation under the 2014 Act, yet one year’s worth of war pension paid the maximum rate for a non-married naval veteran amounts to just £31,000. Veterans should be offered compensation at least equal to that which the courts and the Government have decided that civilians deserve. The unequal treatment of our service men and women amounts to a serious breach of the Armed Forces covenant, which is supposed to ensure that veterans are not disadvantaged because of their service. I hope that the Government will use the Bill to rectify that anomaly, that injustice. When the Prime Minister was recently questioned about our obligations to our servicemen, he promised to look at the issue again. When the Minister replies, will he tell us whether that promise now stands? He knows, because I told him yesterday, that I raised it directly with the noble Earl, Lord Howe, who is now the Minister responsible in the Ministry of Defence. I have not as yet had a reply, and I hope that the Minister will be able to give information on that issue.
That this is not simply a disease of the past is a point underlined by the National Union of Teachers, which states that asbestos remains present in about 86% of schools, leading to an estimated 200 to 300 adult deaths a year. Expert advice given to the House of Commons Select Committee on Education estimates that up to 300 former pupils a year die of the disease following contact with asbestos in schools. Jenny Darby, who is aged 71 and who was a science teacher, has contracted mesothelioma. She says that when the ceiling tiles came off in the classrooms,
“the asbestos would come down. I used to stick them back up almost every day”.
Christine Blower, general secretary of the NUT, says:
“There is still no recognition that asbestos is a serious problem for schools. Shamefully, the Government’s most recent survey of school buildings deliberately excluded asbestos”.
Will the Minister tell us what progress the asbestos in schools steering group has made in identifying the dangers in our schools? What research are we carrying out to identify the dangers in other public buildings such as hospitals—and, indeed, in buildings such as the one where we are meeting today? What advice based on science do we give about disturbing or removing asbestos?
As well as better understanding the causes of mesothelioma, we must do much more to find cures. Apart from preventing great suffering and illness, a breakthrough would remove the need for compensation schemes. It is surely therefore in everyone’s interest to do that. Throughout the debates on the 2014 legislation, I was highly critical of the paltry sums of money which have gone into mesothelioma research. Relatively little is spent on that research in the UK, measured against other cancers of comparable mortality. For example, in 2014 the National Cancer Research Institute figures showed that just £820,000 was invested in mesothelioma research by its partners. That is significantly lower than the £9.9 million and £5.3 million spent respectively on skin cancer—melanoma and myeloma, two cancers with similar mortality. Per death, £3,700 is invested for melanoma, whereas for mesothelioma it is only £480.
Data released by the Department of Health and Department for Business, Innovation and Skills in response to Parliamentary Questions also suggests that statutory investment in mesothelioma research is very low. However, speaking for the Government, the noble Lord, Lord Faulks, said:
“It is absolutely not the case that there is insufficient funding for research. As I have said more than once, the case is that, at the moment, there is not a suitable number of applications for research. The funding is very much there”.
I cannot agree with that, but I can agree with the remark that:
“There needs to be a certainty that the money is there but the top-level researchers also need to be aware of it so that the money and the level of the research capability are brought together”.—[Official Report, 9/12/14; cols. 1711-12.]
There is neither adequate money nor certainty. The noble Lord, Lord Freud, was right when he said:
“My feedback from the Department of Health and Sally Davies”—
Dame Sally Davies, the Chief Medical Officer—
“is that they are aware that it is odd that so little is spent on this disease”.—[Official Report, 5/6/13; GC 252.]
I pursued this inconsistency with the noble Lord, Lord Faulks, and he wrote to me to say:
“In the last five financial years, the MRC and NICR have received just over twenty applications for grants or fellowships that relate to research on mesothelioma. Of these eight applications were successful resulting in an average success rate of 40%”.
Are the Government really saying that the other 60% of those applications had no merit, and how does this square with the assertion that there have been insufficient applications?
My amendment to the Mesothelioma Act would have secured sustainable and fair funding by charging a small levy on insurance firms. During our debate in 2013, my noble friend Lord Kakkar, from whom we will hear later, said that there had been no strategic approach towards tackling mesothelioma. He told the House about the role of MesobanK and its global significance. He referred to the possible breakthroughs that genetic research would produce, but said that such research would need to be kick-started with adequate funding.
Arising from our debate, the Government held talks with the Association of British Insurers to see whether a voluntary funding arrangement could be reached. As I said, there are about 150 insurance companies active in the employers’ liability insurance market, and a small contribution from each could transform mesothelioma research. In January of this year, it was announced that just two of those companies—Aviva and Zurich—would donate a combined £1 million over two years to the BLF’s mesothelioma research programme. This was two fewer companies than had been involved previously. Although I commend Aviva and Zurich, £500,000 a year for just two years does not come close to addressing the multi-million pound funding deficit experienced by mesothelioma research. It does not deliver sustainable funding; it relies on the good will of two companies, which themselves complain that the load is not being fairly shared, and nor does it deliver the promise made to the House when we voted on a statutory provision. It is unfair and unrealistic to ask two firms to be responsible for 100% of the insurance industry’s contribution to mesothelioma research. Any long-term funding solution needs to see this responsibility shared more widely, which is what this Bill ensures.
During the passage of the 2014 Bill, Ministers said that the compensation levy on the insurance industry would be set at 3% of the gross written premium. In fact, what Mr Penning, the Minister in another place, said was:
“Three per cent. is 3% and we have no intention of moving away from it”.—[Official Report, Commons, Mesothelioma Public Bill Committee, 12/12/13; col. 117.]
This time last year I asked—and I ask it again today—why it has been set at 2.2% when that original 3% undertaking was given by the Government? The effect is to short-change mesothelioma sufferers. What is the shortfall from the insurance industry worth? That was a question that I raised yesterday with the Minister. It certainly will not be a small sum of money.
Lastly, what of the research possibilities themselves? The noble Lords, Lord Giddens and Lord Wills, have met with some of the most outstanding researchers in the field, and I am sure that they will describe in greater detail the possibilities that are opening up and the exciting chance to create a global hub-and-spoke national mesothelioma research institute. That was something that we flagged up with the Minister yesterday. The British Lung Foundation has been able to instigate research projects which have opened up extraordinary possibilities. By working with researchers in other areas of therapy, it has gained new expertise and insights. MesobanK, Europe’s first mesothelioma tissue bank, has been created to collect and store biological tissue for use in research, and work is being funded to identify the genetic architecture of the disease.
Dr Peter Campbell, who is conducting research, identifying which genes are the most important targets for mutations in mesothelioma, says:
“Only by understanding its basic biology will we be able to develop a new generation of drugs targeted at the specific abnormalities of mesothelioma cells. This requires sustained investment at all levels of mesothelioma research, from basic genetics and cell biology through drug development to clinical trials”.
He is sequencing the DNA for all 20,000 genes in the human genome from 75 mesothelioma samples and comparing this sequence to normal blood samples from the same patients.
Meanwhile, Dr Elizabeth Sage has done some promising work, too. I met her with the noble Lords, Lord Giddens, Lord Wills, and Lord Saatchi. She told us that she is the only person working anywhere in the world on an innovatory treatment called TRAIL—a drug linked to stem cells, which can lead to the killing off of all mesothelioma cancer cells, which may have application in humans with adult stem cells. She told us that it would take £2.5 million to move from the animal stage, with the mice that she has been working on, to clinical trials. That does not seem an outrageous sum of money when measured against the potential outcomes and saving of some of those 60,000 lives to which I referred.
To take all of this work forward requires sustained funding, and it is simply not true to suggest that there are not first-class researchers and research projects waiting to be funded. We do not have to accept that another 60,000 British people will die of this disease; we do not have to accept the suffering, human misery and hopelessness which accompanies diagnosis. Mesothelioma research funding is currently so low that the temptation is to undertake work on other diseases where funding is secure and sustained. But we can do something about that. It simply is not good enough to rely on ad hoc contributions from insurers, charitable donations and modest government funding. This unreliable approach jeopardises the possibilities of life-saving breakthroughs. The stark numbers of people that this dreadful disease kills and the wholly inadequate funding that has gone to address and ameliorate it speak for themselves. That is why this Bill is needed. I beg to move.
My Lords, it is a great privilege to follow the noble Lord, Lord Alton, on this matter. I had planned to speak briefly, but in support of this Bill, which, as the noble Lord says, has cross-party support. I pay tribute to him for the assiduous way in which he has pursued the issue, and the very comprehensive introduction that he has just given us to his Bill. He did that through the various stages of the Mesothelioma Act 2014, and since, and clearly has a powerful coalition of Peers to support him. That Act is an important milestone in helping sufferers of mesothelioma and their dependants. We should continue to give credit to the Government—then the coalition Government—driven very much by the noble Lord, Lord Freud, who had ministerial responsibility.
Now is perhaps not the occasion to review how the Act is working in its detail, as it is still in its transitional phase; it is understood that payments under the scheme are being undertaken at 100% of the scheduled amounts for claimants, although the noble Lord, Lord Alton, has raised an important challenge on the current levy amount. At the time of the debate on the Bill, it was clear that 3% was the amount to be contributed, and 3% was somehow magically the level at which it would not have to be included in an uplift on charges by the insurance industry. The Act recognised that, although it is not possible to identify in all circumstances each current insurer that would have written employer liability insurance for the various employers over the years, there was a collective responsibility to contribute to providing compensation when there was a nexus with work—and, along the way, there were the various attempts to improve the tracing of policies. There was also a recognition that insurers should contribute to the medical research to address this terrible condition, either to mitigate their risk or to recognise that the link to asbestos was known for some time and not all insurance companies have a proud record of preserving employer liability insurance records. The fact is, as we have heard, insurance companies have contributed to resources over the years, and it is on record during the passage of the Mesothelioma Act that the ABI made it clear to us when we were in opposition that it was prepared to match-fund with government research. The noble Lord, Lord Alton, made the important point that ad hoc, one-off contributions are not spreading the burden where it should be, across the industry.
We have heard from the noble Lord about how many die from mesothelioma each year. We know that it is caused by exposure to asbestos, that it is a long latency disease and invariably fatal. We should recognise that, notwithstanding this, it is not just a matter of the past; asbestos still abounds, not least, as we have heard, in our schools. The HSE has campaigned vigorously to alert people to the risk, in the Silent Killer campaign, and there are strong regulations in place. But we know that some will still want to cut corners. The cause of mesothelioma has not gone away.
When the issue was debated on Report on the Mesothelioma Bill, the argument was advanced on behalf of the Government that it was not a question of money, that what was holding back progress on research into mesothelioma was a lack of high-quality research applications, and that there is a long-standing and widely accepted principle that the use of medical research funds should be determined not just by the importance of the topic but by the quality of the research and its value for money. There are those contributing today who understand these issues far better than I do, but it seems to me that the noble Lord, Lord Alton, is not arguing to support mesothelioma research whatever the quality; his Bill does not seek some override of the established principles, but is about getting extra sources of funding.
On Report on 17 July 2013, the then Health Minister, the noble Earl, Lord Howe, set down four steps, which we have heard about today, designed to encourage the bringing forward of high-quality research applications. These were:
“First, the National Institute for Health Research will ask the James Lind Alliance to establish one of its priority-setting partnerships. This will bring together patients, carers and clinicians to identify and prioritise unanswered questions about treatment for mesothelioma and related diseases. It will help target future research, and, incidentally, will be another good example of where patients, the public and professionals are brought into the decision-making process on health.
Secondly, the National Institute for Health Research will issue what is called a highlight notice to the research community, indicating its interest in encouraging applications for research funding into mesothelioma and related diseases. This would do exactly what the noble Lord, Lord Alton, wants, and what the noble Lord, Lord Empey, suggested. It would make mesothelioma a priority area.
Thirdly, the highlight notice would be accompanied by an offer to potential applicants to make use of the NIHR’s research design service, which helps prospective applicants to develop competitive research proposals … Finally, the NIHR is currently in discussion with the MRC and Cancer Research UK about convening a meeting to bring together researchers to develop new research proposals in this area”.—[Official Report, 17/7/13; col. 786.]
Will the Minister give the House an update on those four areas? What progress has been made? To what extent has this in practice stimulated high-quality applications?
Today, I received in the post a communication from the Asbestos Victims’ Support Group Forum outlining the challenges asbestos victims still face which we should clearly help them address. Supporting this Bill sponsored by the noble Lord, Lord Alton, will help to ensure that the future may hold some hope for those afflicted by this terrible disease.
My Lords, I, too, begin by congratulating my friend, the noble Lord, Lord Alton, on his masterly presentation of the case for the Bill, and on the assiduity with which he has pursued compensation for mesothelioma sufferers over a great many years with determination and thoroughness. I know how many hours he has spent on this and how many more hours he is likely to spend on it in future, but if we get this Bill through, it will be a major advance in securing compensation for sufferers of this horrible disease.
I started work on mesothelioma 40 years ago with the late Nancy Tait, whose husband died an agonising death from mesothelioma. She formed the Society for the Prevention of Asbestosis and Industrial Diseases, which lobbied hard for tighter controls on asbestos, and she fought for the rights of victims to adequate compensation. We published a pamphlet entitled Asbestos Kills, but the use of the material continued here in the UK long after it was banned in other countries of the developed world. That explains why the UK was the country with the highest age-adjusted death rate from 1994 to 2008, with 17.8 deaths per million. The Health and Safety Executive expects the death rate to peak in 2018, after which it will slowly decline, but because there can be a delay of several decades between exposure to asbestos and the onset of mesothelioma, the disease may well be claiming hundreds of lives a year in the decade 2050-60. To put it another way, over the next 30 years, 30,000 deaths are expected from this horrible disease unless new and effective treatments are developed.
At the moment, there is no cure for mesothelioma, and funding for research is woefully inadequate and uncertain. There are said to be government grants of £1.2 million a year, and last January the insurance companies Aviva and Zurich announced one-off funding of another £1 million, but there is no continuity, no assurance that in the years to come there will be even the same level of funding as there is in 2015, with the obvious result that cancer researchers starting out on a career will look for projects in other areas. That may explain the paucity of really high-quality applications coming forward.
Cancer Research UK says it is looking to invest more in rarer cancers, and it would be useful if the Minister could say what has emerged so far from the strategy published in May last year. However, as the noble Lord, Lord Alton, reminded us, in 2014 a mere £860,000 was spent on mesothelioma research—a miserable amount compared, say, with the £9.9 million spent on skin cancer or the £5.5 million spent on melanoma, which are cancers with similar mortality.
The noble Lord, Lord Alton, has been tireless in his attempts to put this right over the years, and I warmly support his latest efforts in this Bill. In addition to the amounts active insurers are required to pay to fund the diffuse mesothelioma compensation scheme, he proposes, as he did in the summer of 2013, that the levy be increased by an amount not exceeding 1% of the compensation payments to fund mesothelioma research. This is supported by the British Lung Foundation, which points out that by improving outcomes and thereby reducing compensation payouts, insurers would stand to benefit from the research. The BLF tells me that the insurance industry is expecting to pay out more than £12 billion under the existing scheme over the years. A fraction of this enormous amount invested in high-quality research could revolutionise our understanding of mesothelioma and lead to significant improvements in the treatment and management of the condition.
Your Lordships may recall that when we last debated this matter in 2013 there was widespread support for the basic principle of insurer-funded research, and of course we are extremely grateful to the two companies that contributed voluntarily to start the process. However, as the noble Lord, Lord Alton, reminded us, there are another 148 insurers active in the employers’ liability market that would contribute if this Bill were passed. Zurich announced a few weeks ago that it was walking away from its £5.6 billion bid for UK insurer RSA. The amounts active insurers would be asked to pay under this Bill are insignificant in comparison with their assets, but they could transform the outlook for mesothelioma patients and their families.
My Lords, like others, I congratulate my noble friend Lord Alton on his tireless work in this area and on his perseverance in trying to improve the outlook for the future. I shall concentrate on mesothelioma not as an epidemic of today but as one that is looming because of the problem in our schools. The need for research is ever more pressing as time goes on.
It has been estimated that more than three-quarters of our schools—my noble friend Lord Alton referred to 87% of schools—have asbestos in place. We know that deaths from workplace exposure are more common among healthcare workers, teachers, telephone engineers, shop workers, finance workers and so on. It is estimated that about 20 deaths a year occur among teachers. In healthcare, we are not sure of the exact number of deaths. When I was a junior doctor the lagging was hanging off the pipes in the basement of Westminster Hospital, just across the road from here, and in other hospitals in London in which I worked. To go to cardiac arrests, we would literally run through the dust and sometimes hit our heads on bits of lagging that were hanging down. Everyone was oblivious to the dangers.
The problem is that we have asbestos in our schools and that means children are being exposed. Other countries have decided to have a phased removal—for example, Australia has already implemented that—and the European Parliament has called for the removal of asbestos from all public buildings by 2028. The Committee on Carcinogenicity of Chemicals in Food, Consumer Products and the Environment reported that,
“it is not possible to say whether children are intrinsically more susceptible to asbestos-related injury. However, it is well recognised … that, due to the increased life expectancy of children compared to adults, there is an increased lifetime risk of mesothelioma as a result of the long latency period of the disease … for a given dose of asbestos the lifetime risk of developing mesothelioma is predicted to be about 3.5 times greater for a child first exposed at age 5 compared to an adult first exposed at age 25 and about 5 times greater when compared to an adult first exposed at age 30 … we conclude that exposure of children to asbestos is likely to render them more vulnerable to developing mesothelioma than exposure of adults to an equivalent asbestos dose”.
The current advice with regard to asbestos is that it should remain undisturbed, and indeed that seems sensible. However, there does not seem to have been a comprehensive assessment of what happens in our schools when children’s chairs and desks scrape along the walls and a little shower of asbestos dust comes into the classroom; or when windows or doors are slammed, not because of children behaving badly but simply because the school is a building with lots of boisterous children in it. Assessments have been done when buildings have been empty.
There is an urgent need for research into why some people develop mesothelioma and others do not, and for long-term epidemiological studies, which take money and investment, to understand what is going on in the long term so that we can plan for it if the numbers are going to go up hugely. In my own field, I have made a plea for us to undertake some research into why mesothelioma causes so much pain, and why it appears to be relatively difficult to manage with straightforward analgesics. In my own hospital, the Velindre Cancer Centre, Dr Jason Lester is doing some innovative research on tumour-associated antigens and their expression on the surface of tumour cells, but that research is not cheap—it cannot be done on a shoestring—and needs dedicated cell lines.
The Asbestos in Schools Steering Group was set up by the Department for Education in 2012. What is its position with regard to academies and free schools in relation to their responsibilities for managing asbestos, and where are the levers that the Department for Education has for managing it? I understand that the Health and Safety Executive produces guidelines for how asbestos should be managed, but the responsibility seems to lie with those who are running the schools themselves.
For us in Wales, this has revealed what you could call the “devolution crack” because no one seems to be taking clear responsibility for schools in Wales. In the Senedd on 28 January this year, the First Minister said:
“The responsibility lies with the Health and Safety Executive; that is quite clear”.
He went on to say that,
“in terms of ensuring that the responsibilities are progressed, that is also a responsibility of the environmental health officers”.
However, that appears to be at odds with Answers that have been given in this House. When the noble Baroness, Lady Randerson, was Parliamentary Under-Secretary of State at the Wales Office, she answered a Written Question last year from my noble friend Lord Wigley about responsibility in Wales by saying:
“The Health and Safety Executive has responsibility for regulations and guidance as it applies to the management and control of asbestos in all workplaces in Great Britain, including schools. However, within this framework, the development of policies for the management and control of asbestos in schools is a matter for the Welsh Government”.—[Official Report, 14/1/14, col. WA 11.]
Your Lordships might think that that would be the end of it and it should all sit with Wales, but I suggest that in the long term the devolution crack that has been demonstrated will affect NHS England just as much as NHS Wales. Wales is a net exporter of young people, particularly into the professions, and a net importer of older people. We have a lot of older people coming to spend their last years in nursing homes, particularly in north Wales and along the coastal strips. So Wales may have a problem today but unless there is joint working between those responsible, and unless Wales is invited to join in and share expertise on these committees, we are not going to solve the problem in the long term for the next generation. I also suggest that the confusion over this has been evident in the complaint that was taken to the Parliamentary Ombudsman by Annette Brooke on behalf of the Asbestos in Schools group regarding the conduct of the Health and Safety Executive following the closure of Cwmcarn High School in 2012, the outcome of which is awaited.
This Bill is very important for the future, not only for the health of the whole of our nation—England and Wales joined together—but because it is important to plan expenditure and demand, and to plan how we are going to manage what may be a looming epidemic among our schoolchildren that we have not even begun to take notice of yet.
My Lords, it is a pleasure to congratulate the noble Lord, Lord Alton, on introducing the Bill. I agree completely that this is a terrible condition that causes massive injury to a number of people.
I want to take a slightly different tack during this debate; I would like to put the disease into some focus. I was first aware of mesothelioma in the 1960s as a medical student. I worked with a very great physician, the late Donald Hunter, who was probably the first person really to identify industrial diseases as a major issue in medicine. He was very prominent in the field of lung disease—pneumoconiosis in miners, for example. He also had further interests in a whole range of things; he even changed the way that diamond drills were used in South Africa to reduce the dust that would cause lung disease in miners.
Some noble Lords might remember that around 1998 I made a television programme about an Irish individual called Herbie, whom we filmed dying. It was a unique film that was part of “The Human Body”. It was massively criticised before it was shown because it was the first time that anyone had filmed a death on television. We filmed Herbie over the best part of two years. It was an amazing experience for me. He was dying of mesothelioma. Interestingly, while of course I bow completely to what the noble Baroness, Lady Finlay, points out about the pain, the pain from his abdominal mesothelioma was quite well controlled by pretty heavy amounts of morphine-like drugs. Extraordinarily, the fact that we filmed him for so long probably extended his life. Amazingly, he lived for at least a year or two longer than was expected by his physicians. We all went to the funeral and filmed that as well, and it was a very moving moment. The value of that was partly to show someone dying from a disease of this sort but also to recognise that there is not necessarily a need to have such fear about death, a very important issue on which I think the noble Baroness will understand where we were coming from. Once the film had been shown, it did not receive any more aggressive comments in the press; it was recognised as being quite important.
Mesothelioma is an extraordinary disease. I shall try to make it understandable. Our lungs, or rather the pleural cavity in which our lungs are contained, are lined by a lining that covers the heart and the contents of the abdomen, including the bowel. The tumours arise from this lining. Unfortunately, unlike epithelial cancers—most cancers are on epithelial tissues—cancers that arise from these embryological tissues have always been much more resistant to treatment. They include tissues that grow from the bone, such as sarcoma, although I think that that is now changing a bit in its impact. None the less, there is no doubt that these conditions are recognised as being astonishingly hard to deal with.
There is no doubt that mesothelioma is primarily caused by exposure to asbestos, almost invariably in the lung and probably in the abdomen as well. It is true that about one-fifth of patients claim never to have been in contact with asbestos but, as the noble Baroness, Lady Finlay, eloquently points out, it is obvious why that might not be so. It is also interesting that the epidemic, as it has been called, that we have at the moment may be on the decrease as asbestos—particularly blue and brown asbestos, the most dangerous forms—is controlled and regulated. Sadly, however, we have not done nearly enough, so the pleas for much better understanding of what we must do in public and private places go without question.
I will declare two interests. First, I am still a research academic at Imperial College, and my most recent project grant has a cancer edge to it, although it is not on one of these cancers. It has not yet been awarded—I may not get the money—but I hope that it will be funded in due course. The other reason for declaring an interest is that many years ago I was a trustee of Cancer Research UK and before that the Imperial Cancer Research Fund. I emphasise to your Lordships that Cancer Research UK raises between £300 million and £400 million a year for cancer research. It also has a number of notable scientists; for example, there are at least two Nobel prize-winners I can think of immediately: one is Paul Nurse, and the other of course is the recent Nobel prize-winner, Tom Lindahl. They both look at cells—cell development, cell cycle, cell division, and what interrupts them. I make it very clear that that kind of research these Nobel prize-winners have done, which is typical of many people in cell biology, has a profound effect on our understanding of all cancers. Their research is not focused on mesothelioma, but it does not mean to say that it is any less relevant. It is very important to understand that an understanding of how cells work is as important as any specific, targeted approach to a particular condition.
There is always a slight risk of targeting one or two particular diseases at the expense of other diseases. We have to be aware of this, particularly when perhaps smaller charities are involved in targeting a particular disease because of an interest group. Cancer Research UK says very clearly that it is very happy to help smaller charities and help fund research where it is properly peer-reviewed, to improve and increase their impact. However, it is also very clear that Cancer Research UK, which is our main cancer research organisation in this country, has not ignored mesothelioma. On the contrary, if you look at its website, you will see very clearly that it is involved with a number of research projects. I will delineate some of the areas, because it is very relevant to this debate.
First, Cancer Research UK has been very clearly interested in the past in seeing whether there might be causes other than asbestos; for example, a viral cause. There is probably not a genetic cause either, but there may be a genetic predisposition to how you react to the tumour once it is being treated. One of the problems with mesothelioma is that it is very difficult to diagnose and often appears late. That patient, Herbie, for example, was diagnosed very late, and when I was active in surgery years ago I opened the abdomen of someone in pain to find that they had a mesothelioma, although there had been no suggestion beforehand that there would be a mesothelioma in that particular patient. Therefore one of the approaches that Cancer Research UK is trying to achieve is slightly earlier diagnosis. In particular, there are two promising compounds: one is osteopontin and the other is the serum mesothelin-related protein, both of which are secreted by these tumours. Unfortunately, one of the problems is that both these markers are secreted by other tumours as well, including, for example, ovarian cancer. Getting a specific marker is a difficulty, but research will continue.
There is no question that in the field of treatment there is a great deal of research. I have a list here, which I have written down, of the number of chemotherapeutic agents which have been looked at. In recent years I can count at least 10 or 11: raltitrexed, gemcitabine, mitomycin, vinorelbine, irinotecan, vinflunine, and there are various combinations of those therapies with other well-known mitotoxic agents. These have included trials; I do not quite understand the figures for funding which have been put round the Chamber, because of course clinical trials, which are often multi-centred, are extremely expensive to carry out, and whether those are included in the figures which are being bandied about is very questionable. The noble Lord, Lord Prior, may have something to say about that issue. We would like to see more trials, and they are expensive, but I do not know whether they are included in the total cost of the research into mesothelioma that is being quoted.
Other treatments have been researched: of course there is surgery, pleurodesis, and there are now attempts to try to reduce the tumour inside the lung membranes. However, some of the more promising therapies which are being actively looked at by Cancer Research UK are biological therapy and immunotherapy. So far, none of these drugs works particularly well. At least 12 have been looked at; there is some promise, and there is no question but that used in combination they may improve. However, these remain, like so many other of these tumours of similar embryological origin that are not mesotheliomas, quite resistant to treatment, just as they become resistant to therapy. Incidentally, photodynamic therapy has been tried.
I do not want to go on at great length about research, but I will talk about three trials that Cancer Research UK is doing at the moment to emphasise the wide range of stuff that is going on. One is some work with HSV1716, which is a virus that acts against dividing cancer cells. It comes from the herpes virus, if I remember correctly. Therefore that is a very good example of where we might make a breakthrough in treatment. Then there is a different strand of research with ADI-PEG 20, which in combination with other drugs such as cisplatin affects a particular amino acid in the chain of cell division. The amino acid that is of particular importance here is arginine. If that can be inhibited, the cancer cells do not multiply. That has been specifically targeted for the treatment of mesothelioma. A compound, GSK3052230, developed by GSK, is I think about to enter phase 3 trials very shortly. That attacks the FGFR1 gene, and therefore stops cancer cells growing.
It is therefore important to emphasise that we are doing research in this country. Whether we are doing enough remains for other people to decide. However, it is important to recognise that these cancers are very resistant to all sorts of treatment, which is one of the reasons why they are so emotionally as well as physically painful. I also suggest that we have heard so many times before about how it has been decided by Governments to put massive funding towards a particular biological project. I think President Nixon said, “We’ll put funds into conquering cancer”, and that was a total failure. We need to understand that of course there need to be targeted funds, but there also needs to be an understanding of the basic mechanisms. That is definitely going on with a wide range of cancers, some of which will affect mesothelial cancer research as well as lung cancer, bowel cancer and testicular cancer research. It is very important to understand that it is not just about simply focusing on one disease which is of terrible significance, not least because it is almost invariably fatal.
My Lords, I, too, join noble Lords in thanking and congratulating my noble friend Lord Alton of Liverpool on introducing the Second Reading of his important Private Member’s Bill, and in so doing I declare my own interest as professor of surgery at University College London, an institution with a very active research interest and base in many different cancers.
There is no doubt, as we have heard in this debate, that mesothelioma represents an important burden of disease for our country—there were some 2,500 deaths from mesothelioma in 2013—but also, going forward, it represents a substantial burden of disease in the years to come, with a predicted 56,000 deaths in the period 2014-2044. We have also heard that mesothelioma represents a particularly nasty form of disease with a very peculiar natural history, potentially seen to develop over many decades in an unpredictable fashion, where there is no therapeutic intervention today that can offer a chance of a cure, where diagnosis is often late, and where palliative care, although advancing, still does not provide patients with any meaningful hope of long-term survival.
Under these circumstances, it was quite right for my noble friend to have put forward amendments in Committee and on Report, when the Mesothelioma Act 2014 was passing through your Lordships’ House. I was interested in my noble friend’s proposition on that occasion because there is evidence that the research base on mesothelioma is limited. With a disease that we understand so little about, it seemed intuitive that, using the opportunity of mechanisms made available by the Diffuse Mesothelioma Payment Scheme, an additional levy might provide a base for enhanced research funding in this area. This is important because, without such funding, it is impossible for many researchers to make the long-term commitment to create a group and study a disease over many years or decades, to ensure that advances in understanding are made available. The noble Lord, Lord Winston, made important points in this area.
This is not only a question of research into the specific disease of mesothelioma, but of ensuring that understanding generated in other areas of cancer research, and cell biology more broadly, can be applied to it. There is now an increasing emphasis on understanding that, if we are going to improve outcomes for patients with a variety of different cancers, and other chronic long-term conditions, we need to move away from a generalised approach to managing disease towards personalised, precision medicine: understanding, at a molecular and cellular level, the mutations driving a particular cancer, such as mesothelioma, then developing biological therapies to target them. The problem at the moment is there is an insufficient molecular characterisation of mesothelioma to ensure that this disease can avail itself of all the other advances taking place in research generally.
On 17 July 2013, when the Mesothelioma Bill was debated on Report, as recorded in col. 786 of vol. 747 of the Official Report, the then Minister, the noble Earl, Lord Howe, answered a number of points. As we have already heard, it was argued then that the correct approach was not to ensure more funding for mesothelioma research but that other mechanisms be used to stimulate more research proposals, which would then be funded if they were of sufficient quality. That seemed a reasonable argument. We have heard the four principal mechanisms that were suggested: first, that the National Institute of Health Research convene a workshop of the principal funding charities, such as Cancer Research UK, the Medical Research Council and others—I understand that that took place in May 2014; secondly, that a highlight notice be published by the National Institute for Health Research, identifying this as a priority area for research—this happened in September 2014; thirdly, that a priority-setting partnership be convened—the James Lind Alliance did this with a variety of stakeholder groups in December 2014. Fourthly, it was suggested that the National Institute for Health Research make its research design service available to help researchers come forward with research studies which were properly designed from a methodological point of view and so would enjoy a greater chance of research funding. What progress has been made in each of those areas; what were the outcomes of those four specific initiatives?
In that same debate, in 2013, we heard that MRC funding for mesothelioma had increased from £0.8 million in the financial year 2009-10 to some £2.4 million in 2011-12. Has the increase in Medical Research Council support for mesothelioma research continued on that upward trajectory, or has funding fallen back? How many more applications have been received by the funding councils, by the National Institute for Health Research or the research charities, as a result of the four specific initiatives that were offered to your Lordships’ House at the time of that debate? It would be very reassuring if there were evidence that there have been more high-quality applications; that more groups are coming together to study mesothelioma; and that there is greater collaboration between those dedicated groups and other groups working on more fundamental areas of cancer biology, or other tumours that share a similar characteristic and biology to mesothelioma, such as some of the sarcomas. If that has not happened, the assumption that by facilitating this type of conversation we would see more research is not going to deliver the kick-start in activity that we require. It may therefore be important to revisit the question of a specific levy, providing more funding and greater incentive and reassurance for researchers to come together and focus on this area.
Ultimately, research is about helping patients, and large numbers of our fellow citizens will suffer from mesothelioma in the years to come. If we can provide greater hope that they might have a better quality of life or, indeed, be cured of this disease, through an enhanced research effort, then we should proceed along those lines.
My Lords, I too thank the noble Lord, Lord Alton, for introducing the Bill, and my erudite medical colleagues for their lectures and exposition on the research which supports work on mesothelioma. I confess to being a bit of a cowboy movie fan. One of my idols was Steve McQueen, whom noble Lords may remember in “Bullitt”, “The Great Escape” and “The Magnificent Seven”. The noble Lord mentioned Navy workers and the involvement of the noble Lord, Lord West, and others in this. Steve McQueen enlisted in the United States Marine Corps in 1947. In those days, warships coming out of the war were covered in asbestos. It was in every single compartment: the roofs, eating messes, everywhere. He was also required to strip out asbestos from the old ships. He died, at the height of his acting career, at the age of 50 of abdominal mesothelioma. We do not know exactly when he contracted the disease—it could have been at any time, but it was presumably between 1947 and 1950 when he was in the Navy. He was also very interested in racing cars and in those days they had asbestos masks in case of fire. It is most likely that it took 30 years before the disease was diagnosed in December 1979. He died less than a year later, in 1980, aged 50. He had malignant mesothelioma of the peritoneum, to which the noble Lord, Lord Winston, referred earlier. He tried desperately to find a cure, going to Mexico and other countries to do so, but sadly he died. His death was a huge shock to those of us who admired his acting skills, and it raised the profile of the disease of mesothelioma. It is a shame that you need such icons to bring people to understand how deadly such a condition is.
As a surgeon, I had very little experience of mesothelioma. I did a cardiothoracic job in which most of the time would be spent draining fluid from around the lungs, because this condition would compress the lungs as it spread around the pleural cavity and cause all sorts of problems. Unlike pleural problems due to tuberculosis, where we would strip off the pleura and try to stop any further fluid collecting, with mesothelioma, whatever you did made very little difference. All we could do was effectively to palliate. So my experience of the disease was very limited.
Curiously enough, we still see advertisements featuring Steve McQueen, with him advertising watches or driving a Ford Mustang. His image is still there. But the condition that he died from is not as well known as it should be. I would hate people to think that, just because this was something that happened before restrictions came into being, we will not see more of this condition. A projected figure of 60,000 deaths has been given but, as the years go by, although there may be a slight fall, I predict that there will be many more. It is also important to remember that it is not just in this country that the deaths will occur. Many countries do not have the regulations or restrictions on the use of asbestos that we have. It is important that we take a lead in trying to discover the causes of mesothelioma and getting to the bottom of how to treat it in order to benefit not only us but many people overseas.
I do not know how many noble Lords have accepted the offer of a tour of the basement of the House. If they have not, I suggest that they do, as they will find evidence of asbestos in this building that they will not believe. We are all likely to be exposed to it. The noble Baroness, Lady Finlay, mentioned her time as a medical student. When I was a medical student, I worked in a hospital where we would walk through underground tunnels with asbestos pipes along the sides. The hospital porters would push the patients on trolleys down those tunnels, bang into the asbestos and bits would fly off. As medical students, we often had a game of rugby as we went flying through the tunnels and, again, chunks of asbestos would come off. To my knowledge, one medical student who never worked in the industry subsequently died of mesothelioma. I can only assume that that was associated with exposure to the asbestos. We have it right beneath us in this building and we should all be very aware of it.
Noble Lords will remember the valiant attempt by the noble Lord, Lord Alton, to introduce his amendment the last time round. On that occasion, the Government suggested that a more voluntary approach was the way forward, with contributions being made on a voluntary basis, but the noble Lord demonstrated clearly that that has not come about. At that time, four insurance companies were bearing the burden of providing payments to sufferers of the disease. That number is now down to two—Aviva and Zurich, which have both contributed £1 million towards research, but only for two years. There are 150 other insurance firms actively involved in employers’ liability which have yet to step forward. It should not be the responsibility of two insurance companies to shoulder the burden of this condition, and it is extremely important that we find a way through this.
I know that charities are able to raise huge amounts of money towards the treatment of cancer. We are all well aware of breast cancer—it is visible and we all know of people who have been affected by it. Hundreds of millions of pounds are spent on research into breast cancer and other cancers. Mesothelioma is an insidious condition that has a sinister outcome, yet very little research has been done into it. Perhaps it is not a very sexy area for researchers to go into. I am afraid that most people do medical research because they wish to explore a particular area for which they have a passion. If we are to generate the necessary funding for this disease, it is important that we stimulate more people to take an interest in it.
There are questions to be asked. Why does a wife who launders the clothing of her husband, who works in an area with asbestos, contract and die of mesothelioma whereas her husband does not? Why can some people survive for up to 20 years? The current longest survivor is a man who contracted the disease 18 years ago and is still going strong. Why is that? Clearly the answer lies in the genes, and we need to do genetic research. Testa et al in Nature Genetics reported in 2012 research suggesting that people with a germline mutation on their BAP1 gene are at a high risk of developing mesothelioma. We need to follow through such areas of research to try to get the answers. My erudite medical colleagues have explained to the House some of the stages that need to be gone through.
I wish to mention the British Lung Foundation, which I worked very closely with when I took through my Private Member’s Bill on banning smoking in cars with children present. It has done a huge amount in supporting the battle against mesothelioma, and it needs to be recognised, acknowledged and supported. As was mentioned, one of its researchers, Dr Peter Campbell, receives a grant for work on identifying the important genes to target for mutations in mesothelioma. Notwithstanding what the noble Lord, Lord Winston, said about the need not just to target one area but to recognise that high-level research may benefit many other conditions and not just mesothelioma, this area needs far more support than we have seen hitherto.
On the previous occasion when this matter was debated, the noble Lord, Lord Alton, missed taking through the proposed levy by just seven votes. It was a very narrow vote and he had a lot of support in the House but, unfortunately, it did not go through on that occasion. At that time, the Government assured us that it would be possible to achieve the ends we wanted through a more voluntary approach. To date, those 150 insurance companies have not stepped up to the plate and we need to do slightly more than rely on that approach. A levy is the missing piece of the puzzle. It is key to essential research into this killer disease, which, as we all know, affects tens of thousands of people. It is important to discover its exact causes and how we can benefit patients in the future.
Why does the UK have the unenviable record of the highest mesothelioma mortality rates in the world, and what are we doing wrong that we could do better? I believe that only research can answer these questions. As I said, it cannot be left to charitable organisations to raise the money for such research, and it is important that we find a way of achieving the necessary funding. Winston Churchill once said, “Action this day”. I think we have reached the point where we need to move towards “action this day”, and I hope the Minister, having listened to the debate and the comments that have been made, will be more inclined to take a harder line on this and to consider finding a way of introducing a levy on the insurance companies.
My Lords, I, too, rise to support this Bill. I congratulate the noble Lord, Lord Alton, on his persistence in pursuing this issue and on the compelling case that he has made this morning for this Bill. It is a privilege to follow the noble Lord who has just spoken and to have heard all the knowledge and experience that he brings to this debate. Indeed, it is a privilege to have heard all the previous speakers.
As your Lordships’ House has heard many times before, and as we have heard again this morning, mesothelioma is a terrible disease. It is remorseless, and it usually kills within 12 to 18 months by gradually strangulating the lungs and heart, bringing severe, constant pain and progressive and dreadful shortness of breath. The strongest painkillers and multiple operations to drain fluid from the chest bring their own side-effects and, unfortunately, as we have already heard this morning, do little to mitigate terrible suffering. This is among the most cruel of all fatal illnesses. As we have heard again this morning, it is all too often inflicted on those who have contracted it through their occupation and all too often through public service. Factory workers, such as those in the railway works in my former constituency, have been disproportionately affected by it. But so too have members of the armed services and teachers.
Despite this, for decades, those suffering from mesothelioma, and their families, have been appallingly badly treated by the insurance companies that should have been looking after them and neglected by successive Governments. It has taken decades to force insurance companies to discharge their obligations to pay compensation. In the end, it took legislation, beginning with that introduced by the last Labour Government and then by the coalition Government, to force them to discharge those obligations. I take this opportunity, if I may, once again to pay tribute to the noble Lord, Lord Freud, for all he did to bring the Mesothelioma Act to the statute book. It really was a very considerable step forward. Yet after all the debates, stretching back years, and after all the calls for Governments to act, there is still no significant progress being made on the adequate resourcing of research into effective treatments for this dreadful illness.
The facts are well known, and we have heard them again this morning. So how can it be justifiable that, based on figures from Cancer Research and the National Cancer Research Institute, more than twice as much per sufferer is spent on, for example, breast cancer research than on mesothelioma? There is no good reason for government inaction on this. Given that the groups this illness strikes hardest so often work in the public sector, the Government have surely an ethical obligation to ensure adequately funded research is carried out.
It may be felt that because asbestos is no longer used in the UK, the actuarial peak of the incidence of this disease is being reached in this country; that this is a legacy disease and, therefore, significant investment in research is not justified. I have heard this suggested, but waiting for sufferers to die off in excruciating pain is an unacceptable basis for any healthcare system. Moreover, the numbers are significant; we have heard them again this morning. Although these are projections—and given the long gestation period for this illness they could well be underestimates—more than 50,000 people are projected to die in this country alone and many more times that number in the rest of the world. Mesothelioma is a global problem. It affects almost everywhere in the world, including some of the poorest countries in Asia and Africa, countries which are ill-equipped to provide and develop such research on their own.
As we heard from the noble Baroness, Lady Finlay, future generations of children in this country are particularly at risk. The figures vary, but at least 75% of schools in this country are estimated to contain asbestos, and the Health and Safety Executive has conceded that a minority of those schools are not doing all they possibly could to manage it. Teachers, caretakers and other school staff are already dying in their hundreds from mesothelioma, and at an escalating rate. We are likely to see that rate escalate still further given the long gestation period for this illness. The noble Baroness, Lady Finlay, has already given these figures, but they are so important that they bear repeating: it is estimated that a child of five is more than five times more likely to develop mesothelioma by the age of 80 than their teacher aged 30. It is also thought—although again there is some argument about exactly how this works—that they are at greater risk because their bodies are still developing, which may make their lungs more vulnerable.
Hundreds of thousands of sufferers all over the world will go on suffering from this illness for many decades to come, which is why the research that this Bill promotes is so necessary. I, and many other noble Lords, have heard Ministers justify this lack of investment in research on the grounds that no good research proposals come forward. But if that really is the case, and there is some dispute about it, the Government need to do whatever is necessary to create structures and an environment in which such proposals will come forward. That would not compromise the Haldane principle—it is simply what the Government should be doing. The most important single action that they could take in that respect is to increase the sums of money available for research. The absence of adequate, secure, long-term funding must clearly be a deterrent to talented researchers committing their careers to research in this area. By turning their back on investing adequately in mesothelioma research, the Government are missing an opportunity to build on our leading position in biomedical research and in an area of such global importance.
The Government are also missing an opportunity to save taxpayers money. I am sorry to bring money into this debate, but it is a matter that must be of concern to the Government, particularly at the moment. Of course, there is no guarantee that any research will produce results, but the experience of research into other cancers suggests that a combination of money and time, and the extraordinary and rapid progress in interpreting the human genome—the noble Lord, Lord Ribeiro, just mentioned the importance of genetics in this field—and huge progress in the size and power of computers, will produce significant advances in treatment. We have already heard this morning from the distinguished medical Peers who spoke about many of the exciting possibilities opening up. This would help save taxpayers some of the huge sums that are involved in treating mesothelioma sufferers.
These are broad-brush estimates, but taking into account the costs of diagnosis, surgery, chemotherapy, radiotherapy, stays in hospital with multiple operations to drain fluid, community care costs, the loss of earnings and so the loss of tax revenue for the one-third of sufferers who will still be of working age at diagnosis, the costs are likely to be upwards of £75,000 per patient. As some 2,500 patients are currently diagnosed in the UK every year, annual costs are likely to exceed at least £185 million. With perhaps up to 70,000 new cases between now and 2050, the total could well rise above £5 billion.
There is a clear ethical imperative for the Government to act now on research into this terrible illness. There is a clear humanitarian imperative. There is a clear financial imperative. There is simply no reason for the Government not to act. The Government and their funding agencies could easily find the funds themselves, even in these difficult times: £3 million a year would more than treble the amount currently spent and help fund a national centre to co-ordinate and develop research.
This Bill offers an alternative route to funding, through a levy on insurers. It will raise money from all those insurance companies that evaded their obligations for so many years, and it will share the existing burden more equitably between those very few companies that have, so commendably, honoured their obligations and the rest of the insurers. Quite apart from the continuing moral responsibility of that industry as a whole to atone for its historic mistreatment of sufferers of this dreadful disease, the sum of money to significantly improve the research effort on a sustainable basis is a tiny fraction of the overall amounts that those insurers saved for decades, and an even tinier fraction of the sums that they will probably have to continue to pay out for decades to come. Does anyone seriously think that £3 million a year would trouble an insurance industry that pays out £187 million a day to its customers, which is more than £68 billion a year?
Despite all these arguments for action, as we have heard, the Government appear to have done nothing since the noble Lord, Lord Alton, raised this issue in your Lordships House two years ago. Their lack of interest is, I am afraid, demonstrated by the Whitehall reaction to the work that I and the noble Lord, Lord Alton, and my noble friend Lord Giddens have done on exploring the possibility of setting up a national mesothelioma institute, which the noble Lord, Lord Alton, referred to in his opening remarks. This would be done on a hub-and-spoke model, involving worldwide collaborations to drive forward research into tackling this terrible disease on a global basis.
We made considerable progress with medical researchers and non-governmental organisations and the possibility of significant funding from charitable sources, but the time is now right to involve government. The sums are relatively small, but it needs some limited participation from government. The Department of Health has been supportive; in particular, I pay tribute to the Chief Medical Officer and her officials, who have been extraordinarily helpful and demonstrated great empathy with the need to do something to improve outcomes for those suffering from mesothelioma.
But the global dimensions of the problem and the nature of the spending review mean that other Whitehall departments need to take an interest as well. The two other key departments, DfID and the Treasury, have refused to meet us. It is one thing to refuse to do something; it is quite something else to refuse even to meet to discuss doing something to alleviate terrible suffering. It might have been thought that anyone going into public service, in whatever capacity, for whatever reason, might have wanted to spend a few minutes exploring the possibility of helping those suffering so terribly from this illness, but obviously not. To be fair to the DfID officials, I should say that they emailed to say that we could look at their website—next year—to try to identify funding opportunities.
In the short time that he has been in your Lordships’ House, the Minister who will reply to this debate has won respect from all sides of the House for his knowledge, for his experience and for his willingness to engage in dialogue, but he has done so perhaps above all for his determination to seek continuing improvements in healthcare. Although he may not be able to commit to support this Bill in its entirety today, I hope that he will at least feel able to recognise that it seeks to put right a long-standing injustice, and that there must now be action to promote research that might bring relief to all those who have suffered from this illness and all those who will suffer in the future. I hope that he will say today that, if this is not exactly the way in which the Government prefer to address the problem, they will find some other way of addressing it and do so now without any further delay.
My Lords, I think that all speakers have paid tribute to the noble Lord, Lord Alton; I will take a slightly different tack. I know exactly when I first met the noble Lord: it was as we queued to take the oath in the other place for the start of the 1979 Parliament. Instead of heaping more praise on him, let me give a Gypsy’s warning to the Minister: the noble Lord may look like a superannuated choirboy, but he has the tenacity of a seasoned political streetfighter.
My noble friend Lord Avebury referred to Nancy Tait, who campaigned for more than 30 years on behalf of asbestos victims after the death of her husband, Bill. In her obituary in the Guardian, she was described as having “genteel bloody-mindedness”. I give the Minister fair warning that there could be no better description of the noble Lord, Lord Alton, when he adopts and champions a cause. If the Minister has a reply that offers sympathetic words but no action, I recommend a rapid rewrite.
I mentioned Nancy Tait and her long fight for justice for victims of asbestos, but, as the noble Lord, Lord Wills, has just reminded us, the truth is that neither big business nor successive Governments have a good record in response to public, and particularly worker, exposure to toxic products and substances. The historic London match girls’ strike of 1888 was in part about the dangers of working with phosphorus, which caused severe health conditions such as “phossy jaw”. In the USA in 1917, there was the case of the “radium girls”, who took the United States Radium Corporation to court because their job had been to paint radium on to the watch dials of luminous watches. Fifty years later, Erin Brockovich campaigned against water contamination caused by Pacific Oil & Gas. In this country, we had the long battle of our coal miners for compensation, and an equally long battle to get the tobacco industry to accept culpability for the health damage done by its products.
All those campaigns have one thing in common: we are dealing with everyday products—a match, a wristwatch, the water we drink, the coal we burn, the cigarette we smoke, the place where we work, our classroom or a government office. Each time, there is a denial of culpability by companies and slowness of action by government. It has often taken action by a small group or even an individual to change the law.
Asbestos is slightly different, although I remember in my childhood thinking of it as having super qualities, not least for its fire resistance—I was probably playing with lead soldiers at the time. My interest in this matter, as the noble Lord, Lord Alton, hinted, is that my sister Betty died of mesothelioma in her 70s. Betty was 14 years older than me and had none of the advantages that I had, either of being the baby of the family or of being a beneficiary of the Education Act 1944. She left school at 14 and went to work in the local ICI works, helping to spin asbestos into synthetic fabric for fireproofing. Thirty years later, after raising her family, she went to work at the Ministry of Pensions in Norcross near Blackpool as an office cleaner. She worked in the asbestos-riddled prefabs that were put up just after the war to house the department and was working there when they were demolished. She mentioned at the time that she thought it was rather strange that those who were doing the demolition were wearing protective clothing but that the office cleaners were not.
At the time of Betty’s death, to gain compensation you had to prove where you had been contaminated, who had done it, et cetera, and of course there was no possibility of such proof. Quite frankly, with Betty gone, the family was not looking for compensation. It was a relief to see that kind of dilemma solved by the 2014 Act. Much progress has been made in recent years across the board, in this country and abroad, with countries and Governments accepting responsibility and providing compensation for industrial and workplace illness. However, as we have heard today, there are still in waiting more victims of mesothelioma and more need for compensation. This Bill is a suitable tailpiece that should probably have been in the original Bill.
The noble Lord, Lord Ribeiro, quoted Churchill—I think that he slightly misquoted him; I think that Churchill said, “action this day”. I always treat the noble Lord with great respect, since he rescued me when I collapsed at that Dispatch Box about four years ago, and now refer to him as my personal physician.
As has been mentioned, there are in waiting many thousands more victims. We have been given by the noble Lord, Lord Alton, a simple and effective way of funding. He has also done something that is equally important, which is to remind us that culpability and responsibility lie not just with the private sector but with government. There is both a moral and a legal responsibility on the part of government to address some of the problems that have been mentioned in relation to public servants. I am pleased to give my support to the Bill.
My Lords, I support the Bill and I, too, congratulate the noble Lord, Lord Alton, on bringing this issue back to Parliament following its narrow defeat in this House in 2013.
Like the noble Lord, Lord McNally, my interest in this subject is personal. Just over three years ago, in June 2012, my sister, Annabel Freyberg, a journalist, was diagnosed with mesothelioma. Her diagnosis followed one month after the death of her nine year-old daughter, Blossom, from a particularly virulent cancer, neuroblastoma. The process of her diagnosis was long delayed as the symptoms of her severe lung problems were initially put down to pneumonia and stress. Over the next 18 months there followed a succession of treatments: a course of chemotherapy; attempts to join various drugs trials; and introductions to different specialists who might have been able to operate on the tumour, but, sadly, by then it had progressed too far for this to be possible. On 8 December 2013 she died, aged 52, leaving behind her husband, Andrew, and her 13 year-old son, Otto.
Statistically, Annabel is an anomaly—one of only 415 women out of 2,538 people who died of the disease in 2013. Most people with mesothelioma are men in their late 70s who worked in areas such as the building industry and were exposed to asbestos. It is rare for a woman in her early 50s to have the disease. To this day we still have no idea where and when she came into contact with asbestos. However, for many women and their children, the link is all too clear and especially cruel. As the noble Lord, Lord McNally, and others have said, they are the wives exposed to deadly asbestos fibres while washing their husband’s clothes, or children exposed to asbestos after greeting their fathers from work.
One of the troubling aspects of Annabel’s illness, which was highlighted by successive visits to oncologists, was how little research there was into mesothelioma, as with most of the rarer cancers. It is surprising that although the UK has the highest rate of the disease in the world, relatively little is spent on research in the UK, measured against other cancers of comparable mortality. As the noble Lord, Lord Alton, and others have already mentioned, the British Lung Foundation estimates that in 2014 only £860,000 was invested in mesothelioma research by its partners, compared with £9.9 million for skin cancer. The consequence of this was that many of the trials available to Annabel took place outside the UK.
However, the story of consultant anaesthetist Andrew Lawson, who survived seven years with mesothelioma, shows that it does not have to be this way. Given a year to live, he investigated the evidence and took advice from colleagues from all round the world. There followed three operations and six different chemotherapy courses. He signed up for clinical trial gene therapy treatments in Philadelphia and dendritic cell vaccine treatment in Holland. At his own instigation, he was the first mesothelioma patient in the country to have regular treatment with intravenous bisphosphonate after promising results on mice in Western Australia. Of course, none of these is readily available on the NHS and, indeed, most patients are simply not told about such trials or know of such basic research.
However, it demonstrates the need to rethink how we carry out our research. The present system of trials is far too slow, too expensive and unsuited for rarer cancers such as mesothelioma. The fastest way to save lives is to see if the drugs for common cancers work on the rarer ones as well, given the shared mechanism of disease across cancer. This is off-label research and until we fix the issue of liability, as advocated by the noble Lord, Lord Saatchi, we will continue to send thousands, like my sister, to an early grave.
One promising aspect of my sister’s treatment, however, was an early use of broad-panel molecular diagnostics. There was no facility in the UK at the time to do this and so her tumour sample was sent to America, where her DNA was genotyped. The results were very revealing but, in her case, proved too late for her to benefit. She had started a course of cisplatin, the standard cancer treatment for the disease, to which she had an adverse reaction. The test results, which we received five months later, suggested that that would happen as she was not suited to the drug and should not have been given it.
I was pleased to read that in Cancer Research’s strategy paper for 2015-20, Achieving World-Class Cancer Outcomes, a key recommendation is the use of such diagnostics to improve cancer treatment. I hope this will be facilitated, for without it we will give many more patients like my sister expensive, toxic and ultimately futile therapies. More importantly, I hope that the data from such national molecular tests can be gathered into SACT, the national database in Oxford which tracks cancer outcomes. This will only improve survival rates and provide, if properly managed, a powerful resource for clinical research.
I warmly support the Bill and hope that it will have an opportunity to be enacted.
My Lords, this has been a terrific debate so far and I congratulate all noble Lords who have contributed to it. I do not usually like to write out my speeches but, for some reason, I made an exception in this case—although I did not write it out but dictated it to a computer and the computer typed it out, which is utterly amazing and relevant to what I am going to say. However, I have noted down so many contributions from other noble Lords that the whole strategy has been completely messed up.
I pay tribute to the superannuated choirboy, the noble Lord, Lord Alton, for his extraordinary work. I am not sure whether or not that was a compliment, but it will stick with him. I join others in congratulating him on the extraordinary work that he has done to promote the cause of those suffering from this horrible disease. I also thank the noble Lord, Lord Wills, for the work he has done alongside us and the British Lung Foundation for being an enormous source of support so far.
As other noble Lords have said, it is difficult to calculate with any accuracy the true level of risk of mesothelioma to members of the population. The usual estimates suggest that 60,000 people will die of the disease in the UK by 2025 if appropriate treatments are not found. However, the real number could be considerably higher because, as other noble Lords have said, asbestos is coming to light in buildings and enterprises where its existence was previously unsuspected. I was glad that the noble Lord, Lord Ribeiro, spoke up as he did because we must accept that this is a global issue and that we must contribute to it on a global level. The number of people scheduled to die of the disease in the developing world if we do not find breakthroughs is 1 million, but that is a minimum estimate and it could be several times that. We should make a contribution to research not only in this country but should network with researchers across the rest of the world.
As other noble Lords have said, mesothelioma is often seen essentially as a phenomenon of the past. After all, asbestos is no longer used in industry—at least in this country—or in construction. Hence many of the debates about it have concentrated on providing compensation for sufferers who, after all, developed the malady through absolutely no fault of their own. In my view, it is still right and proper to press the industries responsible, plus the insurance industry, to increase the existing levies that have been agreed, and other noble Lords have made this point. My noble friend Lord Wills effectively pointed out that it would save the country money rather than produce extra costs.
However, I argue strongly that we should see mesothelioma as a disease that is relevant to our future, not just to the past, and not accept that it is a malady for which there is no possible cure or effective mode of treatment. Unlike the noble Lord, Lord Kakkar, and my noble friend Lord Winston, I am not a medical expert. However, I have spent the past few years working on the digital revolution and studying its likely impact on the outer edges of medicine. I have said this before in your Lordships’ House: the digital revolution is the greatest, fastest and most global technological revolution we have ever lived through. It is moving vastly faster than the original Industrial Revolution and has amazing potential applications to the frontiers of medicine.
For that reason, I think that we are living through what could well be a period of quite unparalleled innovation in medicine and other frontier areas of science more generally. There are three reasons for this and they are all bound up with the digital revolution. The first is that the emergence of hugely powerful supercomputers gives us an opportunity to decode genetic chains in a way that would have been impossible even a few years ago. Secondly, these capacities overlap with major advances in fundamental areas of genetics as such. My noble friend Lord Winston made the point really effectively in the debate, as did the noble Lord, Lord Kakkar. Mesothelioma should no longer be treated as simply an isolated disease. Thirdly, because of the advance of digital technologies and global communications, scientists are able to share data sources in an immediate fashion across the world.
Because of the advances in genetics, as I have just mentioned, we have come to see that mesothelioma is not a disease apart. As my noble friend Lord Winston stressed, research into mesothelioma can draw on work from outside the sphere of the illness itself and, crucially, it can contribute to our understanding of other forms of cancer. We have made significant advances in our understanding of the mutations that allow uncontrolled cellular multiplication and spread. Some such mutations are shared in common by a range of tumours, so our understanding of the genetic components in question can in principle be generalised. In the near future, cancers are likely to be identified by their particular mutations rather than by their site of origin—for example, lung cancer and breast cancer. Treatments developed on this basis are already so successful in some areas that they allow for normal life until a person dies of other causes.
In the past, we know that at least some talented researchers tended to steer clear of mesothelioma precisely because it was seen as a residual disease. Given the innovations mentioned above, the situation could be very different in the future. Therefore systematic research into mesothelioma could have a crucial impact on medicine going forward. It could be relevant to other environmental diseases because it takes 30 or 40 years to come out. We live in a world in which we are ingesting any number of new substances, so we have to try to have a proactive, preventive strategy for that. Studying mesothelioma could illuminate these areas too. I therefore hope very much that the Minister will investigate the possibility of the Government providing funding to help to establish a national mesothelioma research centre, as other noble Lords have mentioned. I have reason to believe that we can get substantial funding from private sources, so if that could be matched we could get the whole enterprise off the ground.
Everyone else has mentioned Winston Churchill, so I may as well end with a Winston Churchill story, given that I have not spoken for that long. I used to be the head of the London School of Economics, one of whose founders was George Bernard Shaw. He had an acerbic relationship with Winston Churchill. The story goes like this. George Bernard Shaw wrote to Winston Churchill saying, “Dear Winston, here are two tickets for the first night of my new play. Please bring a friend, always assuming you have a friend”. Winston Churchill wrote back saying, “Dear Bernard, I am sorry, I cannot make the first night. Please send me tickets for the second night, always assuming there is a second night”.
My Lords, exactly what the relevance of that story is to the debate is unknown, but it is one that I have heard in the past and have much enjoyed hearing again. I will begin, as others have, by warmly congratulating the choirboy—not superannuated—because he has a wonderful and youthful enthusiasm, as the noble Lord, Lord McNally, said, and he is doughty campaigner. I am reminded when thinking of campaigners of Sir Walter Raleigh, who made the famous remark that it is not the beginning of a cause for which you should be praised, but for continuing with it to the end, until it is throughly, not thoroughly, finished. I do not think that the noble Lord, Lord Alton, is going to give up his campaign until it is indeed throughly finished.
The noble Lord outlined graphically the need for this modest measure to supplement the Act that is already on the statute book, and we have heard in the debate a number of moving testimonies, not least from the noble Lords, Lord Freyberg and Lord McNally, whose personal family lives have been tragically affected by this ghastly disease. We have also had something of a medical teach-in because the noble Lord, Lord Winston—I am sorry that he is not in his place; oh, he is in his place. I am so sorry. The trouble with the noble Lord is that he moves; he made his speech from the back and now he is sitting elsewhere. He gave us a treat of a lecture. Then the noble Lord, Lord Kakkar, and my noble friend Lord Ribeiro gave us supplements to that lecture. It has been a privilege and is indeed an illustration of the value of your Lordships’ House that we have such expertise in all parts of the Chamber. That has been demonstrated today in a splendid way.
I want to address most of my remarks to my noble friend the Minister. Quite rightly, complimentary things have been said about him. He made his mark before he came into the House when he was chairman of the Care Quality Commission. In a sense we are talking about quality care here, but we are not appealing to the Minister to come to the Dispatch Box and agree to large extra expenditure from public funds. What we are asking him to do is recognise that there is a very real problem that we cannot adequately quantify. In her splendid speech, the noble Baroness, Lady Finlay, talked about schools. How many five year-olds in this country today might already be stricken by this disease, which perhaps will not manifest itself for many years to come? We all know that in our youth—I am sure that I speak for most of your Lordships—asbestos was regarded as a good thing. It was a fire retardant material that brought great benefit. But now we know that it is one of the most lethal of killers. Of course the Minister knows that, but we are asking him to recognise that more must be done to combat this evil within our midst, the full and devastating results of which none of us knows.
That there should be a levy on insurances is a very sensible suggestion, but I would say to the Minister that that should be just the starting point. There are many substances from which we all benefit in some ways—some we regularly imbibe and others we eschew—that damage the health of the nation. Why should there not be a specific levy for medical research on alcohol, tobacco, petrol or diesel?
As my noble friend knows well, I have argued, as have many in your Lordships’ House in various debates on the health service, that we must have a plurality of funding if the National Health Service is going to be the service we need in the years ahead. We have to get away from the sticking-plaster approach that we have often referred to in this Chamber. Here is a wonderful opportunity to begin something by having a specific levy for a particular disease that could then be extended. I commend this to the Minister. When I talk to him about these funding issues, he always indicates the difficulty. Of course we all know there is a difficulty. We all know that there is a degree of cowardice in all political parties when we start talking about charges and compulsory insurance, for example. This is not one of those things the Minister has to fight shy of, because here, we are saying that those who have a degree of culpability should be made to acknowledge that by making a contribution.
Of course, that may not have helped the sisters of the noble Lords, Lord McNally and Lord Freyberg, but there will be others in the future whom it might help. We might be able to avoid some of the tragedies about which they movingly spoke, if only we could grasp this particular nettle. I do not want from the Minister the soft answer that turneth away wrath. I want a determined commitment on the part of the Government to recognise the overriding importance of medical scientific research, and to recognise that this is one way properly to meet the needs that we all acknowledge.
My Lords, I admire the passionate commitment of the noble Lord, Lord Alton, and his tenacity, to use the word that the noble Lord, Lord McNally, used about him in his own moving speech. I will only say of the noble Lord, Lord Alton, that he is a highly experienced and effective politician. I also applaud and thank the British Lung Foundation for the essential work that it continues to do and I thank noble Lords, particularly my noble friends Lord Giddens and Lord Wills, who have worked alongside the noble Lord, Lord Alton, to try to ensure that we get a better disposition of forces in the field of mesothelioma research.
Like other noble Lords, I am scandalised by how little funding has been made available for research into mesothelioma. The noble Lord, Lord Alton, described it as a paltry amount. My noble friend Lord Winston suggested that it might have been rather more than some of us have hitherto understood. Whatever the case, there has been a lamentable failure to make the progress that we would all have wished to see towards better understanding of the essential nature of this disease, its prevention and diagnosis, its cure, ideally, but otherwise mitigation of the horrible suffering that it causes.
As we have been told, the prospect on the best estimates is for not fewer than 60,000 deaths from mesothelioma in this country over the next 30 years and of very many more deaths globally in newly industrialising countries, where health and safety standards are not what they ought to be. I would have thought that this would be an interesting challenge for researchers and that they would have seen important opportunities in this field. But for whatever reasons, it appears that mesothelioma research remains a relatively unfashionable area of research for people to go into.
On Report of the Mesothelioma Bill on 7 July 2013, the noble Earl, Lord Howe, the predecessor of the noble Lord, Lord Prior, responding to an amendment moved by the noble Lord, Lord Alton, to the same effect as his Bill today, pinpointed the issue as being the problem of encouraging sufficient high-quality research applications. I made the same case in that debate and I continue to believe that that is at the heart of the problem. The noble Earl outlined four initiatives that have been rehearsed for us by my noble friend Lord McKenzie of Luton, to whom we owe so much—without his preliminary work, we might not have had the Mesothelioma Act 2014—and the noble Lord, Lord Kakkar. Those were the priority-setting partnership, the highlight notice, the availability of the Research Design Service and the convening by the National Institute for Health Research, the Medical Research Council, and Cancer Research UK of researchers to gather new ideas about how to go forward in this field. As the noble Lord, Lord Kakkar, said, it will be extremely interesting if, when the Minister replies to this debate, he is able to tell us about any progress there may have been in consequence of the initiatives promised by his predecessor and how effective they look like being.
I continue to think that the problem is not essentially one of lack of publicly provided funding for research. Admittedly, Professor Dame Sally Davies acknowledged to the All-Party Parliamentary Group on Medical Research, in a rather confessional moment quite recently, that following the decision by your Lordships’ House to advise the elected Chamber to think again about the appropriateness of cuts to tax credits, she was having nightmares that the Chancellor might turn and rend the budget for medical research. If he were to do so, that would be a grotesque non sequitur, and I do not expect it to happen.
I understand why the noble Lord, Lord Alton, charges the Government with inadequate commitment in this area and why he has tabled his Bill, which would impose a supplementary levy on the industry. But we should think very carefully before rushing to legislation. It is still relatively early days. The 2014 Act has been on the statute book for only 18 months and we should proceed in this area with caution. The typical structures that we have for mobilising funding for research in this country are broadly the right ones—the arm’s-length principle, peer review, and quality of proposed research being the criterion for funding. It is true that they do not guarantee perpetuity of funding, but they do produce high-quality research. I continue to think that the issue is how to attract the right applications for funding for research into mesothelioma.
That brings us to the role of the employers’ liability insurers. I have no hesitation in saying that they have a very strong moral duty in this area. It is one of the great business scandals of the past 50 years that the contracts that should have secured compensation for people who were exposed to asbestos and developed mesothelioma in consequence—contracts written by the employers’ liability insurers—in so many cases somehow evaporated. The documentation could not be found when it became time for people to make their claims. The insurers did not want to face their long-tail obligations, so it was right that the levy was introduced.
I would like to see the employers’ liability insurers take upon themselves the responsibility of funding the process, which noble Lords have talked about, of attracting high-quality researchers into this area to develop the strategy initiated by the noble Earl, Lord Howe. They should not make their contribution conditional on the Government matching what they have to put in. They should willingly provide funding to supplement what the publicly funded research councils and the national institute find themselves able to provide for research in this field. They should supplement and, indeed, be willing to surpass what publicly provided funding is made available, just as the medical charities do.
Charitable money has been lacking in this area. My noble friend Lord Winston pointed out that some of the major cancer research charities are funding generic, high-level research that will have a very important relevance to mesothelioma. Where more specific disease-related funding is concerned, it has been notably lacking. The noble Lord, Lord Alton, gave us the comparative statistics. Why this should be one can only speculate, but I suspect that it has to do with class. Mesothelioma is perceived as a blue-collar, working-class disease. Its incidence is mostly found in the old industrial areas. Regrettably, it is apparently very much harder to raise charitable money for research in this kind of area. It is one more instance of what has been called the hideous injuries of class. Of course, the National Health Service and publicly funded research exist to overcome these kinds of imbalances and disparities.
I want to see the employers’ liability insurers voluntarily create a charitable endowment, but we appear to be very far from a situation in which that is imminently to happen. We have been told that out of 150 employers’ liability insurers, the number willing to make a voluntary contribution has declined from four to two. We are now left with only Aviva and Zurich taking that responsibility. We should certainly congratulate and thank them, and recognise what they are doing.
I hope that it will not be futile to appeal to the better nature of others in this area of the insurance business. They ought to be good citizens and decent human beings. They ought also to be mindful of their own business interest. If they fail to make a decent contribution to research, they will have to pick up the cost of compensation—unless, somehow, the contracts go missing again in the future; we should be vigilant to make sure that that does not happen. They ought to be concerned about their reputation. They have an opportunity to rehabilitate their reputation and they can certainly afford to do so. I hope that they will be willing to make a major contribution to the cost of establishing the national mesothelioma research centre that other noble Lords have spoken about and which they are trying to establish. We therefore need the whole sector to rise to the moral responsibility that they have and continue to do so. The situation as it is is profoundly unacceptable.
There will also need to be continuing determination on the part of the department. There is an imperative for more research and the department must do all it can strategically to encourage the channelling of funds towards research applications and research proposals of the quality needed. However, whether there should be legislation seems to me, as I have said, doubtful. It is relatively early days, but if the insurance sector now fails to rise to this responsibility I put it to the Minister that he and his ministerial colleagues in government really must respond to the challenge that the noble Lord, Lord Alton, has set. I would regret the necessity of it because it would be anomalous. It could be argued that it is invidious for government to accept that Parliament should legislate to provide funding for one particular disease. There are so many terrible diseases and areas where research is urgently needed. It would be inconsistent with the way research is, I believe, rightly funded in this country.
The challenge is there for the insurers. It is still not too late for them to act voluntarily to provide funding to stimulate the passion among researchers of which the noble Lord, Lord Ribeiro, spoke, to encourage them to work in this field and to maintain that support, challenge, stimulus and effort over the years to come. Early action is needed. I hope that the industry will respond. If not, I will add my support to the measure proposed by the noble Lord, Lord Alton.
My Lords, I am the last person to speak before the winding-up speeches and the fifth doctor in this debate. Noble Lords will all be highly relieved to know that I will not say anything medical.
Unfortunately, I was unable to participate in the debates on the Mesothelioma Bill last year, so I very much wanted to come along and add my personal support for the initiative of the noble Lord, Lord Alton. Everyone has said that he has been tireless; he is not only tireless but energetic and focused in a way that has brought great rewards for people with mesothelioma. I also wanted to add my personal thanks to the noble Lord, Lord Freud, for the work that he did, and we must not forget the noble Lord, Lord McKenzie of Luton, before him, who also made great strides during his time in office. The noble Lord, Lord Prior, the Minister today, will not be surprised to know that we want to see the same from him.
Why am I here today? Like the noble Lords, Lord McNally and Lord Freyberg, I have a personal story. My father died of mesothelioma. I was a young doctor in the 1970s when I first realised that my father had this appalling constricted breathlessness. He had worked as a powerhouse engineer during the war. He supervised the powerhouses for Boots Pure Drug Company, which was a massive manufacturing plant during the war, making not only the pharmaceuticals needed, from antidotes to chloramine to aspirin, but gasmasks on military contracts. As noble Lords know, military gasmasks had the worst sort of asbestos in them during the war.
There is no doubt that it was the powerhouse lagging and that factory work that produced the illness that killed my father 35 years later. My mother well remembers him coming home with his overalls drenched in white and grey powder, which she washed, of course. She was darned lucky not to get it. As a result of this illness and because of his early death from this terrible disease, she was widowed for 37 years. It is a terrible thing, as a young doctor, to watch somebody dying of this appalling constriction. As the noble Lord, Lord Ribeiro, said, at the time all they could do was keep taking the fluid off. That was the only way to help him through this terrible time.
The mean survival rate has gone up by no more than 2.8 months over the last 30 years. That gives some indication of the desperate need to research. Normally, rather like the noble Lord, Lord Howarth of Newport, I would not have supported the Bill, but we are now at the point where we are seeing a resistance from the insurers. They are not coming to the table. They are not stepping up to the mark and supporting it.
I want to bring home to the Minister what has happened with regard to dementia research because of all the arguments we have heard about why people are not coming forward with good proposals—for example, this is not a fashionable area of research or there are issues about funding. We heard all these arguments in relation to dementia but what made the difference is the point that the noble Lord, Lord Wills, made—namely, there was political focus. Somebody in the Department of Health took an interest in dementia and said that for all kinds of economic and other reasons, and given the seriousness of the disorder, we must focus our efforts on tackling it. Only the Department of Health can get people round a table and ask them, “What are you doing? How can we make this work?”. It does not take a great deal of a Minister’s time to do this. I challenge the Minister to provide a political focus on this issue. He will no doubt tell us how we can tackle the research deficit, but I believe that Ministers need to take an interest in this issue and provide the political focus to make the research happen. Money is important, but providing political support to make the research happen is what is really required.
My Lords, I wish to speak briefly in the gap. Like the noble Baroness, Lady Murphy, I have personal experience of this issue. My father at the age of 19 turned down the opportunity to study marine engineering at Royal Holloway College to join the Merchant Navy. He joined in 1939 and, by 1943, according to the South Wales press, he was the youngest chief engineer on merchantmen crossing the Atlantic, carrying oil, primarily, I understand, from Galveston to various parts of the world, including ports in the United Kingdom. He died in 1989, having being diagnosed with mesothelioma in 1984. He spent five years being treated, I think in the Brompton Hospital. He had repeated operations on his pleura to try to alleviate all the pain and the difficulty he was experiencing. He left many letters and diaries, in which he explained why he had insisted on working on lagging in the boiler rooms of the SS “Penhale” and the SS “Duke of Sparta”, the two tankers on which he spent much of the war. He explained that he insisted on doing the lagging work himself—of course, he paid the price for it—because he was always uneasy about the use of asbestos but could not quite define it.
In the correspondence that he left behind, he expressed his shock over the lack of research that was being conducted in the whole area of cancer treatment. I have read the letters that he wrote to various authorities requesting that additional resources be allocated to that area, not particularly for himself—I will come to that in a minute—but for others. He also complained extensively about the lack of support that was given to those people—in his case it was not so much of a problem—who found it very hard to establish who was commercially liable for compensation given that they were suffering from this disease. His concerns about the research were in part motivated by his regard for the many Chinese crew members on the ships who worked under him when he was chief engineer. It is clear that he worried that they would never receive treatment and, in many cases, would never know what they were suffering from. This was not necessarily the case on the ships on which he served, as he was doing the lagging work, but he was not to know what would happen to the Chinese crew members on other ships in the Merchant Navy, where they were doing a lot of this work. He worried about what was happening to those people. There must have been tens of thousands of Chinese crewmen who served in the Merchant Navy who never knew to the day they died what they had suffered from. They were probably said to have died from something coming under a general cancer heading.
I say to those who have gone, and to their relatives, wherever they are in the world, that at least we in the United Kingdom are now treating these matters very seriously. Indeed, the speech of my noble friend Lord Winston was absolutely fascinating. It contained information that many of us had never heard before. I am sure that my father would have been fascinated to hear this debate today. As I say, I hope that additional resources can be found, if only in memory of those who have died in the service of their country.
My Lords, this has been a very moving debate. We are indebted to all noble Lords who have shared their personal experiences and brought home the distressing nature of this condition to those of us who perhaps were not so aware of that as we should have been. As some noble Lords have said, this is not just a legacy disease. We can see stretching ahead over the next 30 and 40 years many thousands of people being affected by this distressing condition. That is why we are so indebted to the noble Lord, Lord Alton, for his campaign in this area and for bringing this Bill to your Lordships’ House. I also echo the tribute to my noble friend Lord McKenzie for his work in this area over the years.
Clearly, the aim of the Bill and our debate concerns research. I hope that the noble Lord, Lord Prior, will be able to update us on exactly what is the state of research in the United Kingdom. We have heard, if not conflicting views, a slight divergence of view about how much research is being conducted. My noble friend Lord Winston is a little more optimistic about where we stand than many noble Lords and the briefings we have received. If the noble Lord could update us, that would be very helpful.
It would also be helpful if the noble Lord could tell us about the outcome of the work by the NIHR, following previous debates in Parliament, in its efforts to stimulate more research. If he can say that the NIHR is now confident that it can see a pipeline of research coming forward in the next year or two, that would be hugely important to our debate. But if his view is that so far there is less optimism about the number and quality of research projects being undertaken, clearly we need to think very carefully about how to stimulate some more.
I agreed with the comments of the noble Baroness, Lady Murphy, on dementia research. That is an excellent example of the pharmaceutical industry finding it difficult to see a way to fund research projects given the failure of many research projects in the past, and where the Government took the initiative in that area. The result is that we have something that seems to work very successfully. We know that the Chief Medical Officer is a very persuasive, strong champion of research. If she were to make it clear, with the authority of Ministers, that the department wants to stimulate research in this area, and the resources are available, I think one could then expect to see a very strong pipeline of research applications coming through.
On funding, the department has consistently said that there is enough money available for the research projects coming forward. But has the Minister picked up the point, which my noble friend Lord Winston raised, that once you put in the clinical trial costs we are talking about potentially many millions of pounds? So while the decision of Aviva and Zurich is to be commended, the kind of money we are talking about here—a combined £1 million over two years, together with whatever the Medical Research Council and other medical charities can come up with—does not really seem sufficient to generate the kind of long-term research projects that we clearly wish to see.
The overall performance of the insurance industry has clearly been lamentable and indefensible. At every point, it has had to be cajoled and kicked into doing anything at all, so if the noble Lord, Lord Prior, is still relying on voluntary discussions and agreements with the industry, he will have to show that he is pretty confident of success over the next few months for the noble Lord, Lord Alton, not to pursue his Bill. The insurance industry has form. The Minister will know from our collective disappointment in relation to the care sector that the industry is very good at warm words, but I am afraid that it sometimes does not follow up with decisive action.
I understand the caution from my noble friend Lord Howarth about whether legislation is the right way to go down, but I wonder whether the example of the pharmaceutical industry and the agreement on drugs might be one way to go forward. The negotiations with the Department of Health on the amount of money that the health service gives to pharmaceutical industries, known as the PPRS, is a voluntary agreement. But it is backed up by statute because, if agreement is not reached, in the end the department can impose a settlement. I suspect that this was in the mind of the noble Lord, Lord Alton. If we have a statutory provision, that is a kind of backstop. It would not stop the Government saying, “If you don’t want a statutory levy, then you have to come up with a proper voluntary scheme”. I say to my noble friend that sometimes there is a case for legislation.
I hope that the Minister will respond to three or four other points that have come up in debate. On veteran issues, there was a very interesting debate in the Commons yesterday to which his honourable friend Mr Mark Lancaster responded, where the argument came that,
“the Ministry of Defence should offer veterans with mesothelioma the option of a lump sum in compensation … broadly comparable to that awarded”
to individuals who have no existing employer to sue. The Minister there said last night that the MoD has,
“commissioned advice from the Independent Medical Expert Group”.
Although, as the Minister said, it is a complex position, it will require,
“consideration, and close consultation and engagement with colleagues across Whitehall”.
He said that he hopes,
“to be in a position to make an announcement as soon as possible”,
“to update the charities at the forthcoming central advisory committee meeting next month”.—[Official Report, Commons, 19/11/15; col. 935-36.]
Perhaps the Minister might update Members of your Lordships’ House who have taken part in this debate, because the point raised about the veterans is very important.
The second point is about schools. The noble Baroness, Lady Finlay, suggested that the general advice where asbestos is in buildings is essentially to leave it at rest. Does that advice seriously hold when it comes to schools? The problem she raised is that the research which led to that advice may not have been undertaken in schools. I hope that, at the very least, the Minister would be prepared to discuss this with his colleagues in the Department of Health.
The third point is about Wales. The noble Baroness, Lady Finlay, also raised the interrelationship between the HSE, as a UK body, and the Welsh Government’s responsibilities. My noble friend Lord McKenzie and I have wrestled with this issue over the years but, again, it would be good to know whether the Minister could discuss this with Ministers in the Welsh Assembly Government to see whether there is a gap that needs to be addressed.
In conclusion, this has been an extraordinary and very powerful debate and I want to echo a point raised by the noble Lord, Lord Cormack. Essentially, it is a plea for the Minister to tear up his lines to take. The department will have its answers, but I think that the House is looking for something more. At the very least, it is looking for a sense that the Minister recognises that here we need leadership from Ministers to make something happen. We very much hope that the noble Lord will be able to give it.
My Lords, it is always very dangerous when you are told to tear up your lines to take, however tempting that might be. The noble Lord, Lord Alton, whom I have only met once before, which was quite briefly yesterday, told me that he was a street-fighter so I come here forewarned that he is not as he appears. I suspect that as I stand here, he is sharpening his knife and polishing his knuckledusters to set about me in a few minutes’ time. I thank him, though, for bringing this issue to the House. It has been a fascinating debate. I am by no means an expert in mesothelioma but I feel much better educated about this issue now than I did two hours ago.
The debate has been trebly compelling because it has brought together people with authentic and tragic personal experience: the noble Lords, Lord McNally and Lord Freyberg, and the noble Baroness, Lady Murphy—and, right at the end, the noble Lord, Lord Campbell-Savours. That personal connection with this terrible disease is very powerful. The debate has brought that together with the clinical and medical academic knowledge of the noble Baroness, Lady Finlay, and the noble Lords, Lord Winston, Lord Kakkar and Lord Ribeiro, which is a very powerful combination. When you add to that the broad knowledge of other noble Lords who have contributed, whose interest in the subject goes back many, many years, it produces a very powerful cocktail.
Clearly, mesothelioma is a terrible and devastating condition. There is no cure and, as the noble Lord, Lord Winston, reminded us, it is a very difficult illness to tackle. Uncertainties remain about the best available approaches to diagnosis, treatment and care. It affects thousands of people. In my mind before this debate, I thought of it very much as a legacy disease—one that would gradually wither away. The noble Baroness, Lady Finlay, commented that many children will be suffering from this disease in 20, 30, 40 or 50 years’ time. As the noble Lord, Lord Giddens, mentioned, this is not just an English disease, although we have a particularly high incidence in this country; it is an international, global illness. The noble Lord mentioned it affecting literally millions of people.
It is therefore absolutely right that mesothelioma research has been discussed many times both in this House and in the House of Commons. I suspect that whatever the outcome of today’s debate and when we discuss the matter again in Committee, knowing the reputation of the noble Lord, Lord Alton, he will never let this sleep. I imagine that we will be hearing from him on many future occasions.
I want to talk about two aspects at the beginning. The first is funding. Funding is needed for research—that goes without saying. The four largest insurance companies have previously made a donation of £3 million between them and more recently, as has been pointed out, Zurich and Norwich Union have donated a further £1 million. That has helped to support valuable research into the disease, but a much higher level of funding has come from the Government through the Medical Research Council and the NIHR. Together, those funders spent more than £3 million in 2014-15. The MRC is supporting ongoing research relating to mesothelioma at its toxicology unit. It is also funding one current fellowship. The NIHR is funding three projects through its research programmes, and its clinical research network is recruiting patients to a total of 11 studies. In view of the comments of the noble Lord, Lord Winston, I can highlight that the NIHR is co-funding experimental cancer medicine centres with Cancer Research UK. These centres are supporting studies in mesothelioma. Money is also available through European Union research funding programmes. I am delighted that the University of Leicester is a partner in a successful bid for nearly €6 million for research on immunotherapy to treat malignant mesothelioma.
I thank the Minister for giving way so early in his speech, but these figures are very important. Is he aware that the British Lung Foundation has done its own study on how much money is specifically directed to research into mesothelioma? A lot of the work that he just described may well have implications for mesothelioma, but it is generic. The British Lung Foundation figure specifically for mesothelioma research is £820,000, not the millions he has been talking about. Does he accept those figures in the context of what I have just said?
I hate to disagree with my noble friend, but one problem with mesothelioma research is that Cancer Research UK, for example, puts such funding partly in the box of lung cancer funding—it is a different form of lung cancer. There is a risk that we may be underestimating the amount of money being spent. That always happens when these figures are bandied about. I am not suggesting that we should not be spending more—or less—but it is very difficult to be precise about the figures sometimes cited.
Perhaps I can take that away and come back to the House. I think it will be difficult to come up with precise figures, to be honest, because of the difficulty in allocating some of the more generic research to particular areas. I think that we can encapsulate some of the comments made by the noble Lords, Lord Winston and Lord Wills, and come back to the House with a more thought through, considered figure.
I can see that the Minister wants to move on from the issue of funding, but before he does I should point out that the House has been given figures. It is important to record that in our debate, because they are figures that his predecessor, the noble Earl, Lord Howe, gave the House in reply to a Parliamentary Question tabled by my noble friend Lord Wigley, and referred to by my noble friend Lady Finlay earlier. The figures in the reply to Parliamentary Question HL5852 show that funding from the NIHR on,
“research centres and units, and research training awards on mesothelioma research”,
as the Minister said, in 2006-7 was £0.0 million; in 2007-8 was £0.0 million; in 2008-9 was £0.0 million; in 2009-10 was £0.0 million; in 2010-11 was £0.0 million; in 2011-12 was £0.0 million; in 2012-13 was £0.2 million; and, in 2014, was £0.4 million. Those are the Government’s own figures, which have already been given to Parliament.
I think that we are into some definitional issues here, to be honest, from what the noble Lord, Lord Winston, said, and from the figures that I gave earlier, which I am not making up—they are figures that have been given to me. We should come back with some greater clarification and perhaps some closer definition of what the funding figures are.
My impression, although it may be wrong, is that the essential problem is not a lack of funding but a lack of sufficient research applications. Of course, I accept that there is a connection between the two, which I shall perhaps come back to in a minute. The MRC received no mesothelioma applications in 2014-15, and only one in the current year. I want to clarify and stress that the work being funded is of high quality, consequent to high-quality applications. In response to questions raised by the noble Lord, Lord Kakkar, and others, the Government have taken measures to stimulate an increase in the level of research activity. Patients, carers, clinicians, academics and funders have worked in partnership with the James Lind Alliance to identify what the priorities in research should be.
I imagine that some noble Lords will have read the report by the James Lind Alliance, but for those who have not I can say that, following a survey and a workshop, the top 10 mesothelioma research priorities were announced in December 2014, and the NIHR published a final report from the priority-setting partnership in July. In advance of the identification of research questions by this partnership, the NIHR highlighted to the research community that it wanted to encourage research applications in mesothelioma. The NIHR subsequently invited researchers to apply for research funding, in particular to address the research questions identified by the partnership. Eight NIHR programmes participated in this themed call. Fifteen individual applications have been received, of which two have been approved for funding to date, two are under review, and 11 have been rejected. Some noble Lords may think that that is a very high level of rejection, but it is broadly consistent with the overall funding rate for applications to NIHR programmes, which is roughly about one in five.
In addition, the NIHR Research Design Service continues to be able to help prospective applicants to develop competitive research proposals. This service is well-established and has 10 regional bases across England. It supports researchers to develop and design high-quality proposals for submission to NIHR itself and to other national, peer-reviewed funding competitions for applied health or social care research.
The Government are not predisposed to support the Bill, but there is something that we ought to consider—perhaps outside the Chamber. We believe that the existing process for accessing research grants works well; we do not believe that money is the real shortage. It is interesting to note that the Government’s spend on research for medicine is a little over £1 billion—a very significant sum—but the Government are not keen on hypothecated grants for research. However, I have been thinking about this very carefully over the last couple of days, and the noble Lord, Lord Alton, touched on it slightly obliquely at the beginning, but it is an important point.
When the 2014 Bill went through Parliament, it was felt by the Department for Work and Pensions that the highest levy that could be taken from the insurers without forcing them to pass it on through higher premiums into industry was 3%. I understand that there is a shortfall between that 3% and the actual level of claims being made. I wonder whether the 1% that is being asked for in this Bill could be funded through the shortfall within the existing levy. That might be an avenue worth exploring. I say that because at the moment the fact that we are relying on two insurance companies is not equitable. Why should Zurich and Norwich Union cough up £1 million when other employers’ liability insurers are not contributing? This needs further discussion, but I wonder whether there is a way through this and whether we could not use the shortfall in the existing levy.
What the Minister has just said is so profoundly important that I want to ask him to clarify it a little further. I moved an amendment to the then Mesothelioma Bill precisely to that effect: if there was this gap between the 3% that the insurers were prepared to pay and the 2.25% that the government actuaries thought would be needed, that would be devoted not to the insurance industry’s profits but to the relief to this terrible illness. At the time, the Minister in this House was quite resistant, but when it was debated in the other place the Minister there was quite clear. We heard the quote from the noble Lord, Lord Alton. Some months ago, when I asked a Parliamentary Question for Written Answer about this point, I recall that the Government said that they were not yet in a position to say whether there was a shortfall. I think I heard the Minister say that he believes there may be such a shortfall. If he said that, this is profoundly important as a way forward, as he suggests, so I would be grateful if he would clarify that.
If there is a shortfall—and there may be a shortfall—given that that levy is raised from the industry on an equitable basis rather than relying upon two or three insurers to do it on a voluntary basis, that strikes me as a better approach. The point has been made that compensation payments are somehow different from funding research, but it strikes me that the two are very closely related. I am just putting it out there for further discussion, and I would like to pursue that discussion with my noble friend Lord Freud, who is probably the expert on our side of the House on this matter and was intimately involved with the Bill which came through the House in 2014. I would like to have that discussion with him and perhaps with the noble Lord, Lord Alton.
I have not dealt with the veterans issue or the schools issue. I shall deal with them by letter, if that is all right. They are both extremely important. The situation with the veterans and the MoD is under active consideration by my noble friend Lord Howe. I will write to the noble Baroness, Lady Finlay, if she is happy with that, setting out the situation on schools in Wales.
The instinct of the Government is not to support the Bill, for the reasons I have given, but there may be a way through this which we are able to explore over the next month or two.
When he writes to me, will the Minister include in the correspondence the noble Lord, Lord Wigley, who has done a lot of work on schools in Wales? He might want to meet him. Will the Minister clarify who has responsibility for free schools and academies? They are in a different position from maintained schools, yet they often occupy buildings which contain asbestos.
I think the answer to that question is that the Health and Safety Executive would have prime responsibility for them. I think the point that the noble Baroness is making is that the local authority no longer has the responsibility it would have over local authority schools. I will look into that issue and write to the noble Baroness.
Before the Minister sits down, and I apologise for prolonging this debate for longer than necessary, does he agree that medical advances in every field are often very serendipitous? The classic example would be the completely unfunded discovery of penicillin when it was first produced, and it was subsequently only mediocrely funded until we had a wartime crisis.
In about an hour’s time the Minister will be answering a Question about doctors’ overtime. One of the critical issues that has not been discussed in that debate has been raised by Jeremy Farrar, the director of the Wellcome Trust, who points out that one of the real issues is the problem with young doctors being able to do research in a very generic way, which has all sorts of benefits, including clinical mesothelioma research. That is a fundamental problem. We in this country are very good at medical research and on the whole we fund it quite well, although obviously we would like to have more funding, but providing the environment for continuing research is essential for what we are discussing in this Second Reading debate.
I thank the noble Lord for that comment. We in this country are often highly self-critical but actually we have a remarkable record on research. We have three of the top medical academic institutions in the world in this country: Oxford, Cambridge and Imperial. We have UCLH, King’s and Manchester. We have some extraordinary research organisations in this country. There is, I guess, an issue over quality and quality control. There are an awful lot of clinicians who do research that may not be to the—
I am sorry to give the Minister such a torrid time, but I hope he recognises that he should look internationally. There are important models in other countries, such as the Pacific Lung Health Centre, which is integrated with the wider lung foundation and has produced significant research. We should not just think nationally; we should look at other models and see how they could be adopted here to deal with the issues that the noble Lord, Lord Winston, rightly raises. As I tried to stress, mesothelioma shares things in common with other cancers and, now that we have got to a deep enough genetic level to be able to understand why some of these processes happen, I think it would be worth while to get some information on what exists elsewhere to see how far it could be applied here.
My Lords, this has been at times a deeply moving debate, with some very stirring personal stories being told to your Lordships’ House. It has also been thoughtful, amazingly well informed and, as the noble Lord, Lord Hunt of Kings Heath, said earlier, powerful at times in the way that we have addressed this deeply troubling issue. Some of the contributions, such as that of the noble Lord, Lord Winston, have been slightly above my pay grade, but I shall read them afterwards with great interest, as I know will many people, particularly in the asbestos victim support groups, the British Lung Foundation and others who campaign up and down the country on these issues.
I assure the Minister, who has given us what could be a small opening of the door on this question—I will come back to that later—that I brought no knuckle-dusters and I have no knives. Despite the curtain-raiser that the noble Lord, Lord McNally, gave us earlier, the reality is that when he was Minister at the Ministry of Justice he was incredibly helpful on this question when the LASPO legislation was before us. I still bear some of the scars from that period. Yes, I will persist in presenting this, though not just by myself; there are many people, as the noble Lord knows, not the least of whom was the late Member of Parliament, Paul Goggins, who took up this cause so strongly in the other place. As a curtain-raiser to assure the Minister that the issue is not going to go away, I can tell the House that Paul Goggins’s successor in the other place, Mike Kane MP, will be introducing a comparable Bill in the House of Commons in January.
This issue will not go away, and Members of both Houses want progress to be made. It may be that the formula in this particular Bill or the way we have expressed it is not exactly what needs to be done and there may be other ways of doing it, but it is important that something is done about it. That formidable alliance brought a defeat for the Government during the proceedings of LASPO. It was ping-ponged up and down the corridors, and was a very good example of how by concentrating on an issue which had not even been debated at earlier stages in the Commons, your Lordships were able to bring about change. The noble Lord, Lord McNally, said that perhaps the missing tail-piece in the legislation was a commitment to funding. Perhaps, therefore, we are right to keep returning to that issue until something is done about it.
The noble Lord, Lord McKenzie of Luton, was very much the godfather of the compensation arrangements that were introduced in the Mesothelioma Act. He reminded us that we are not seeking research whatever the quality, and that we need to make this a priority area.
The noble Lord, Lord Avebury, has been raising this issue for more than 40 years. I always like to think of him as the inspiration for some of the things I try to do in politics. Being just a chip off his block is sufficient. He reminded us that there has been woefully inadequate funding, no continuity, and only a fraction of the necessary resources.
My noble friend Lady Finlay, one of five medics of a very distinguished nature who have contributed to our debate today, said that this is an epidemic that is looming—not a historic disease—and, as many noble Lords have said, it has worldwide implications. She reminded us of the risks to our children, a point returned to by the Minister in his reply to the debate.
The noble Lord, Lord Winston, told us the story of Herbie, whom he had filmed during his death from mesothelioma, which drew to the public’s attention more about this often unknown and unfamiliar disease. Even the name is difficult for people to get around their tongue, let alone to understand its nature. To shine a light on these things, as we have done in your Lordships’ House today or through the media, is always an important thing to do.
The noble Lord, Lord Kakkar, said that this is a particularly nasty disease which we understand so little about. He reminded us of the crossover between this and so many other diseases and of the importance of personalised, precision medicine. He also reminded us of what happened during the debate on the Mesothelioma Act on the issue of precedent.
I want to say a word about precedent and levies, because the Minister himself touched on this. I refer to the HGV Road User Levy Act, the Gambling Act levy, the fossil fuel levy, the Gas Levy Act 1981, and the levy on the pig industry to eradicate Aujeszky’s disease. Under Section 24 of the Betting, Gaming and Lotteries Act the levy board has a power to place a charge on all bookmakers involved in horserace betting, and Parliament requires a levy to be spent for the purpose of improving the breed of horses. If levies are good enough for dealing with horse breeding or pig disease or indeed in this legislation itself—it is hypothecated legislation and that is the whole point: there is a levy, which the noble Lord referred to, which is to raise money to deal with compensation—we can refer to plenty of precedents if we want to follow this path.
The noble Lord, Lord Ribeiro, reminded us of the story of Steve McQueen, which helped to give this whole issue some public profile, but he also said that it should not just fall to two insurance companies to have to deal with this—a point which has been reiterated throughout the debate. He said that the levy could be the missing piece of the puzzle and that only research can answer the questions in that puzzle.
The noble Lord, Lord Wills, described this as a terrible and remorseless disease and reminded us of the moral duty of the insurance industry, a point returned to by the noble Lord, Lord Howarth, in his contribution. The noble Lord, Lord Wills, said that there is a clear ethical, humanitarian and financial imperative, and talked about the contrast between the £3 million for research and the £68 billion a year paid out by the industry.
The noble Lord, Lord Freyberg, and other noble Lords, have referred to their own personal stories, which I found deeply moving. They were a reminder to us all that this disease is not just confined to those who worked in heavy industries in the past. I felt challenged by what he had to say, particularly about the “toxic and ultimately futile” therapies which are currently available. Surely we can do better than that. The noble Lord, Lord Giddens, told us to raise our game and raise our sights. I am always excited when I talk to the noble Lord about the huge possibilities from supercomputers, from the collection of data and the worldwide networking that we can be involved in. The noble Lord, Lord Cormack, said that I had shown “youthful enthusiasm” in bringing forward this measure.
It is only in the House of Lords that you could possibly be accused of youthful enthusiasm. I think it was Robert Kennedy who said that youth is not a time of life, it is a state of mind, a temper of the will, a quality of the imagination. Your Lordships all have plenty of that, to a very high degree, although the noble Lord, Lord McNally, reminded me that we first met in 1979 as we took the oath. We were both a lot younger then. We have sung in the same choir on many occasions over the years and I was very pleased that we were doing so again.
The noble Lord, Lord Cormack, said that we have a moral duty to future generations. This point was reiterated by the noble Lord, Lord Campbell-Savours, who referred to what happened to his father and the implications for those who continue to work on our ships, in the Merchant Navy or Royal Navy, today. My noble friend Lady Murphy told us about the 2.8 month survival rate and how nothing had improved from the time that her late father died, leaving a widow of 37 years. I will take that story away and remember it. The contrast with dementia research, to which she and the noble Lord, Lord Hunt, referred, is incredibly important.
The noble Lord, Lord Hunt, talked about the case for legislation as a backstop, and I agree that one does not want to resort to it as the first thing. This was the missing tail-piece when we had the chance to legislate, but the only way that parliamentarians can keep issues of this kind before the public, and the Government, is by issuing Bills of this sort. He said that the House is looking for something more. The Minister said that there may be a shortfall within the existing levy and, if so, it might be something we could use towards the research that is so desperately needed. I would be very happy to participate in talks with the noble Lord, and the noble Lord, Lord Freud, and I am sure other noble Lords who have been following this would want to be invited too.
There was argument about the figures. I quote from the British Lung Foundation:
“Contrary to some claims made previously in the House, the quality of research applications has been very high—indeed the number of applications funded by the British Lung Foundation would have been a third higher, had more funding been available. Although previous BLF and insurer research has made some progress and is a cause for celebration, it is frustrating to think how much further along we’d be towards new, effective treatments had mesothelioma research funding been on a par with funding for other cancers. It is sobering to consider how many lives that might already have cost”.
I also asked about the possibility of overestimates, a point referred to by the noble Lord, Lord Winston. On the contribution being made at the moment by the MRC, the BLF says:
“We believe this is a significant overestimate. Figures provided to us by the National Cancer Research Institute … this year state that spending by all NCRI partners—which includes both the NIHR and MRC, as well as other major funders of cancer research—totalled just £820,000 over the same period”.
There is dispute but these figures have been given by the British Lung Foundation, which is at the very centre of these arguments and follows the issues day by day.
I hope the Minister will clarify those questions as we proceed. He has also promised to return to the issues of veterans, which was raised today, and schools. My noble friend Lady Finlay raised the issue of Wales and the noble Lord, Lord Hunt, pressed the Minister further for information about that. We look forward to the correspondence which will precede the debate in another place in January. I know that our colleagues there will read the speeches that have been made today with a great deal of interest. I am deeply indebted to all those who have participated and I ask the House to give the Bill a Second Reading.
Bill read a second time and committed to a Committee of the Whole House.