Mesothelioma – Plea for Research Funding To Combat A Disease Which Will Claim 56,000 More British Lives – Defeated by 7 Votes July 17th 2013.

Jun 22, 2013 | Uncategorized


Mesothelioma Research Amendment 2

Moved by Lord Alton of Liverpool

2: Clause 1, page 1, line 6, at end insert “, and
“( ) fund research into mesothelioma (through the research supplement under section (Research supplement))”
Lord Alton of Liverpool: My Lords, in moving Amendments 2, 20, 21, 22, 23 and 24, I join other noble Lords who have expressed their thanks to the noble Lord, Lord Freud, the Minister, for doing an incredibly tough job over the last year or so. It has been very well done. I am very grateful for his remarks earlier.
The Minister said that if the Bill were delayed—none of us intend to do that—it could cause further problems in due course. Nevertheless, I just hope he accepts that that is no reason for curtailing due parliamentary process in any way. Of course, it is up to the Government to decide what to do in another place. If your Lordships decide to include amendments to the Bill here, it will not be Members of another place who precipitate the ping-pong; it will be the Government.
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With those words, I refer the noble Lord to the all-party support for this group of amendments, and to the letter that was sent to him and other Members of your Lordships’ House, signed by some 22 Members. They include some of the leading authorities on medical research and the law and others with first-hand knowledge of a fatal disease that claims 2,400 lives annually and is predicted to kill a further 56,000 British citizens between 2014 and 2044. Dr Mick Peake, the clinical lead at the National Cancer Intelligence Network, is right when he says, “We must make every effort not to miss this opportunity to lead the world in this area and to finally make significant inroads into this dreadful disease for patients and their families”.
The amendments before your Lordships seek to impose a levy of no more than 1% to raise funds to support research into the causes and treatment of mesothelioma, and have the wholehearted support of the British Lung Foundation. I thank it, and especially my noble friends Lord Walton of Detchant and Lord Pannick, and the noble Lord, Lord Avebury, who are co-sponsors of the amendments, and noble Lords who spoke in Committee and who through constraints of time might be unable to do so again today.
At the conclusion of Committee, it was the Minister who encouragingly said:
“Well, my Lords, I feel like adding my name to the amendment”.
As recently as Monday, I met the Minister again—once again, I am grateful to him and his team of officials for the time and courtesy they have unfailingly given—to see whether we could find a way for him to translate that desire into a reality. I have offered to withdraw this amendment if the Government undertake to introduce their own at Third Reading, or indeed in the other place, and that offer still stands. Although I feel that the noble Lord has been a victim of the Whitehall curse, I want to put on the record that he has been deeply committed to ensuring more support for research. However, as he told us in Committee:
“I have hit a brick wall at every turn”.
It is Parliament’s job to demolish such brick walls.
Although new figures published yesterday show that the MRC has made a helpful increase in funding for mesothelioma research, the sums are still very modest and should be seen in the context of years and years of virtually no state funding. When viewed alongside the two cancers of closest mortality in the UK—myeloma and melanoma—the funds for mesothelioma still lag considerably behind. Unlike many other forms of cancer, rates of mesothelioma are still rising. The United Kingdom already has the highest mesothelioma mortality rates in the entire world, yet there is little by way of effective treatments and at present no chance of a cure.
This shocking situation was underlined by the Minister himself, who candidly told us in Committee:
“Something very odd is happening here when so little money has gone into research in this area”.
In Committee he agreed that,
“There needs to be a kick-start process to get research going”.—[Official Report, 5/6/13; col. GC250.]
That is precisely what this amendment does. It is a kick-start.
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In a letter sent by his department to all Members of your Lordships’ House on Monday, the Minister reiterated his support for increased support for research, but said that, “unfortunately, the mechanism proposed is just not viable”.
With the assistance of the British Lung Foundation, I took the precaution of asking Daniel Greenberg QC to draft this amendment with me. I did so not simply because he is the editor of Craies on Legislation, Stroud’s Judicial Dictionary, Jowitt’s Dictionary of English Law, Westlaw UK Annotated Statutes and editor-in-chief of the Statute Law Review, but perhaps most importantly because he was parliamentary counsel from 1991 to 2010. Clearly, he knows a thing or two about drafting legislation, and presumably the Government would not cast doubt on the viability of the reams of legislation that he drafted for them.
The Minister will forgive me but in the nearly 35 years since I entered Parliament, I have heard the phrases “not viable” or “technically defective” as the refuge of last resort whenever we run out of good arguments. If the argument for a levy lacked viability, it would cast doubt on the whole principle that underpins this Bill, which is based on the imposition of a levy.
The Minister will recall that before Committee he was briefed to oppose the amendment on the grounds that there was no precedent for hypothecation and to raise that other old bogey of “legal obstacles”, the Human Rights Act. To answer those objections, noble Lords gave the noble Lord the precedent of Section 123 of the Gambling Act 2005, Sections 24 and 27 of the Betting, Gaming and Lotteries Act 1963, the HGV Road User Levy Act 2013, and other industry levies, including the fossil fuel levy, the levy on the pig industry to eradicate Aujeszky’s disease and the Gas Levy Act 1981. As my noble and learned friend Lady Butler-Sloss and my noble friend Lord Pannick made abundantly clear, the idea that such a levy was an infringement on the Human Rights Act is, frankly, risible. Indeed, my noble friend Lord Pannick said:
It would be quite fanciful to suggest that there is a legal reason not to support an amendment”.—[Official Report, 5/6/13; col. GC 247.]
None of those shadow-boxing parliamentary arguments will do. They are simply not worthy of an issue that has lethal consequences for so many of our countrymen. Why has mesothelioma research had this Cinderella status? Why does it require Parliament to put it right? Why has it for so many years received little or no state funding? In Committee, the Minister provided clues. He said that mesothelioma,
“was an unfashionable area to go into and therefore the people who wanted to make their careers in research turned to other cancers. As a result, good-quality research proposals were not coming in and therefore the research council did not feel that it could supply funds. That is the reason and it has been the reason for decades”.—[
Official Report
, 5/6/13; col. GC 253.]
The advisers to the Minister at the DWP have written that there is no lack of necessary skills for research into asbestos-related diseases but that there are perverse incentives to tackle what are perceived as more tractable research questions or tumour types that are considered easier to study and, where possible, to build on past progress. They said that research bids that were seen as likely to fail were not being presented.
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Therefore, it is not a lack of capacity in the field that is the problem; as my noble friend Lord Kakkar outlined in Committee, many eminent researchers are interested in mesothelioma research. High-quality bids have been in short supply in the past decade precisely because leading academics knew that it was pointless putting time and effort into preparing a bid that was unlikely to succeed.
Dr Robert Rintoul, consultant respiratory physician at Papworth Hospital and chief investigator of the recently launched mesothelioma tissue bank, told me that if more funding is made available, big labs will suddenly get interested in mesothelioma, which will increase the quality of research grants. Dr John Maher, honorary consultant immunologist at King’s College Hospital, said, “As I write, we have a clinical-grade viral vector ready for use, an optimised and patentable manufacturing process and a recently licensed GNP manufacturing facility available to generate cell products. However, there are no realistic prospects of obtaining funds to undertake such work in mesothelioma in the near future”. There clearly is no question that further investment in mesothelioma research is urgently required.
We have heard from the Minister that this will peak in two years’ time, but listen to this stark warning from Dr Stefan Marciniak, the honorary consultant physician at Cambridge University’s Institute for Medical Research, who told me that there will be a continued increase in cases worldwide well into this century owing to the ever-increasing use of asbestos in the BRIC countries, and that carbon nanotubes share frightening similarities with asbestos-like minerals and could lead to a second wave of mesothelioma. That is why we need urgent research
I am delighted to see the Minister and his noble friend Lord Howe on the Front Bench today. The Minister will be sponsoring a reception later this month on mesothelioma research for an invited audience of some 40 people. I know that he will agree that such meetings, welcome though they are, are not enough and certainly not a substitute for statutory obligations. By themselves, such initiatives are unlikely to lead to the sea change in investment that is needed to ensure that the recent advances in mesothelioma research are sustained. If we do not seize this legislative moment, all the talk will vanish into the ether. It will be the informal approach that lacks viability, not this amendment.
As my noble friend Lord Walton of Detchant suggested in Committee, the amendment proposes that the funds be administered by a competent third party, which would have no difficulty in investing in all the different types of research that are so urgently required. We need both a statutory levy on the insurance firms and a greater effort from our public research institutions in dealing with a disease that will kill more than 2,000 people every year in the United Kingdom. It is vital that we as legislators grapple with the source of so much misery and suffering, which is the reason, after all, for the millions of pounds of compensation payments for which the Bill provides.
The amendment proposes a commendably simple approach and, crucially, has not been opposed by the insurance industry, whose representatives I met last
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week. No letter has been received by Members of your Lordships’ House from the industry opposing this very modest amendment.
Having listened to suggestions made in Committee by the noble Lord, Lord McKenzie, and others, we explicitly provide in the amendment for the scheme—a levy of no more than 1%—to be proportionate. The supplement reflects insurers’ market share, as the main levy contained in the Bill already does.
In the face of a vicious disease that according to the Government’s figures will claim the lives of some 56,000 more British citizens and the lethal nature of which we have known about since the Merewether report of 1930, it would be nothing short of a national scandal if we did not seize this rare legislative chance to offer those who have faced the blight of this horrific disease something better than what has gone before.
I beg to move.
Lord Walton of Detchant: My Lords, I have been pleased to add my name to this amendment, so forcefully and ably proposed by my noble friend Lord Alton. This is an appalling and tragic disease. Although my specialty was never respiratory medicine, in the course of my professional career I saw many people suffering from mesothelioma and recognised to the full its utterly devastating effects. Indeed, one such person was a professional colleague of mine who was a consultant neurologist. One of the disease’s most unfortunate features is that, after exposure to asbestos, particularly blue asbestos, the incubation period is extraordinarily long. People sometimes do not develop the disease for many years after exposure. Indeed, I recently learnt of an 87 year-old man who had developed mesothelioma for the first time, having worked at the age of 40 as carpenter cutting up sheets of asbestos. That is one of its appalling features, and its effects are utterly distressing. It is not a localised cancer that grows in a single location where a surgeon can remove it; it is a diffuse involvement of cancerous tissue that grows over the surface of the lung, between the lung and the chest wall. It gradually begins to strangulate the lung and eventually causes respiratory failure. It is a devastating disease—I need say no more.
However, as my noble friend has said, research on this topic is extraordinarily limited. I speak as someone who had 14 years’ involvement with the Medical Research Council, ending up as a member of the council for four years. At that time, we received research grant applications from a huge number of notable doctors and scientists seeking to research particular conditions.
The MRC, as part of its policy, used to identify priority areas which it saw as requiring further research effort, but it did not identify single diseases such as mesothelioma. It talked about problems of mental health, and about problems of ageing. Even the notable Cancer Research UK campaign, which has been a massive contributor to research in cancer in the broadest sense, has not identified single-disease conditions as having a particularly high priority in its programmes.
It is interesting that the British Lung Foundation and four leading insurance firms three years ago reached an agreement under which they collectively granted £1 million a year for three years to invest predominantly
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in mesothelioma research. The results were impressive. New researchers from other fields who had never thought of working on mesothelioma started to take an interest. This led to the creation of Europe’s first mesothelioma tissue bank, storing biological tissue and funding work to identify the genetic architecture of the disease.
My experience as a doctor, having been involved with a huge number of different charities funding research over the years, is that the existence of charities that are established to support research on single diseases has been immensely valuable and important in attracting new scientists into the field for which they have provided funds. One has to think only of the British Heart Foundation, which has given a massive impetus to work on heart disease. Without the money which the Multiple Sclerosis Society has collected over all the years, we would never have had the same effect.
In my research field of neuromuscular disease, had it not been for the work of the Muscular Dystrophy Campaign there is little doubt that we would not have reached the stage that we now have, where research on exon skipping has led to the introduction of a drug for the treatment of the most severe form of the disease. Those are massive developments, but they came about because funds had been raised by individual charities and groups specifically for research in that disease.
As my noble friend said, until this recent initiative by the British Lung Foundation, the funding for research on mesothelioma had been miniscule. Unfortunately, the funding by the BLF and others has now run out. The sole purpose of the amendment is to persuade the Government to accept that a tiny percentage of the levy which they already lay on insurance companies for the support of patients with this condition and their families should be specifically devoted to research. That could make a massive contribution to the future of patients with mesothelioma and to the development of an effective treatment in the foreseeable future.
The Government cannot protest on the grounds of hypothecation, because the levy under Clause 13 is already hypothecated. They cannot just say that people working on mesothelioma can apply to the Medical Research Council. Of course they can, but the crucial point about the levy is that it would provide funds that will attract scientists to work on that highly intractable problem. The fact that it is intractable is not an excuse. It deserves more attention, it deserves funding, and this group of amendments is one way to make certain that that funding will be made available and that scientists will be attracted to work in this field.
4.30 pm
Lord Selsdon: My Lords, I thought that the death sentence was cancelled many years ago, but I almost seem to have heard my own death sentence now. I worked with asbestos for many years. I picked up Cape blue. Every now and then, when you get a cough in your throat, you think, “Oh, have I caught this disease”—I cannot even pronounce it—“Is there something wrong with me?”. That was during a period in industry. I came out of the Navy, where of course we had masses of asbestos protecting ships, in repairs and elsewhere. I worked with it. It was to some extent a mystical product because it was the only fire protection kit available.
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I then went into industry because of the new developments. These were the new plastics, which were suddenly to replace the whole of the construction industry. I learnt about polyurethane, formaldehyde, polytetrafluoroethylene, poly this, poly that. I would work on the shop floor without a mask, because when you are young you do not have a mask, and when sent out to do roofing materials, lay asbestos cement, cutting and so on, of course we did not wear heavy boots with protective caps; one wanted to be flexible. We did not have safety ladders; we slid down the outside. When I was working on the Blyth Colliery project as a young rep up in the north, I learnt about mining diseases—silicosis and all those things that I could not pronounce.
However, that was another period of time. Now, quite suddenly—and, I think, correctly; I have been impressed by what I have heard today—out of this something has been identified. I have tremendous regard for what the noble Lord, Lord Alton, does, but it is the right thing in the wrong place. This Bill is the right one to go through, and it could have gone through years ago. As I tried to look at the figures, I suddenly realised that I am even more grateful to your Lordships’ House because 50 years ago, when I first came here, I would not have left the asbestos and the plastics world without having to be in your Lordships’ House. I changed my job and went into building and industrial research and I have learnt, over many years, an enormous amount from noble Lords and have great respect for them.
I think that my noble friend Lord Freud and his colleagues have got it right. The question that I ask is: why was this not done a long, long time ago? What is being done about all those other historic diseases that may have come from chemicals of one sort or another? As we have new research developments, those who develop a particular product never think of the future. They do not understand what smells and other things can do. I never wore a mask and now I feel that I am starting to cough a bit, but I have learnt a trick. In your Lordships’ House, when you stand up to speak, many people need a glass of water or need to clear their throat. That may lead them to believe that they have one of these industrial diseases. However, it is strange but there is a little trick that you can do: wiggle your toes. That gets the circulation going and stops you having a dry throat and having to look to the Doorkeepers to ask for water.
I say to the noble Lord, Lord Alton, that I will help in any way that I can to raise money for a research fund and others. I think that the way to approach it is to look at those who may have had great success in property development or things of this sort. Located in their buildings—probably in almost every building in London—are likely to be unacceptable levels of asbestos. However, the levels are not unacceptable until you find it. It may be behind every board. We used to make a product called asbestolux, which was a fire-proofed, simple board used in all homes instead of plywood, which was too expensive at that particular time.
Throughout the land, from our colonies, asbestos, such as the Cape blue asbestos, is virtually everywhere. The danger is, once you try to move it and destroy it,
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you create dust and some of the research has not yet managed to identify how you screen it. Perhaps your Lordships have been in a block where someone is redeveloping a flat and before you know it, in comes an enormous team of people with large fans that suck and circulate. You wonder whether that is taking out some of the micro ingredients that come with asbestos.
Obviously, you will find that in the building trade, people do not necessarily follow what are called “building regs”. Therefore, many accidents have happened with saws and so on that could have been solved. Therefore, to the noble Lord, Lord Alton, and to others, I say: let us just get on with this Bill and get it through. It can do a lot of good as it stands. Do not hold it up and I will see what we might be able to do to encourage some support anywhere else. I am grateful to your Lordships for listening to me and I feel that perhaps I will not fade away quite as early as I thought.
Lord Pannick: My Lords, I have not wiggled my toes but I have added my name to the amendment of the noble Lord, Lord Alton. In his compelling speech, the noble Lord referred to the letter that the Minister sent on Monday. In it the Minister expressed his support for increased research, but he added that,
“unfortunately, the mechanism proposed is just not viable”.
The letter does not provide what we lawyers call further and better particulars as to why the Minister believes that the proposal is not viable; nor did the Minister throw any light whatever on this matter in Grand Committee. Indeed, in his opening remarks this afternoon the Minister very helpfully referred to a number of other matters, but he did not give any explanation in relation to this issue.
In Grand Committee, the Minister focused on a concern that research funding was the responsibility of the Department of Health, while this was a DWP-sponsored Bill. I hope that we will not hear that argument again today. As a matter of law, of course the Government are indivisible, and, as a matter of efficiency, government departments talk to each other. I am encouraged to see the noble Earl, Lord Howe, in his place today.
What other reasons, therefore, could there possibly be for the Minister to suggest that the proposal of the noble Lord, Lord Alton, is not viable? The Government must be satisfied that Clause 13 of their own Bill is viable in providing a levy. These amendments simply provide for a research supplement on this levy, which would be clear as to those who are obliged to pay, the amount and the purpose. Nor can it be that the Minister thinks that these amendments do not reach their target. As the noble Lord, Lord Alton, mentioned, the amendments have been drafted by Daniel Greenberg, a former parliamentary counsel of distinction, who is editor of the authoritative work Craies on Legislation.
Nor could it sensibly be suggested by the Minister that the amendments are not legally viable because they might be the subject of some legal challenge under the Human Rights Act or the European Convention on Human Rights. The Bill contains a levy and there are many other examples of statutory levies introduced by Parliament to advance good causes. The noble Lord, Lord Alton, has given a number of examples;
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I mentioned in Grand Committee the levy on bookmakers under the Betting, Gaming and Lotteries Act 1963 for the purpose of improving horse racing in this country. If, as Ministers must believe, the levy in Clause 13 is legally viable and those other levies are legally viable, I cannot understand why the amended levy of the noble Lord, Lord Alton, is not equally viable. Any legal action to challenge an amended clause—amended in the terms of the noble Lord, Lord Alton—would be a legal action, to coin a phrase, that is not legally viable.
There is a vital need for research and research funding to combat this awful disease. To include these amendments in the legislation would encourage research. I do not accept for a moment the concern expressed by the noble Lord, Lord Selsdon, that for us to do our job and improve the Bill would somehow hold it up. There is ample time for debate on such matters if—I hope it will not be the case—the other place disagrees with us. When it comes to a choice between liability on the insurers and the Minister’s concerns about viability, I am with the noble Lord, Lord Alton.
Lord Howarth of Newport: My Lords, I, like all noble Lords, want to see more research into mesothelioma, above all into ways to prevent people developing this terrible and lethal disease. Noble Lords may be aware that quite recently Russia, leading a group of another six countries —Kazakhstan, Ukraine, Kyrgyzstan, Zimbabwe, India and Vietnam—blocked a move to have white asbestos listed under the UN convention that requires member countries to decide whether or not they should risk importing that substance. I fear that asbestos-related diseases, including mesothelioma, will long remain with us; we will need research for the long term.
I am entirely sympathetic to the purposes of the noble Lord, Lord Alton, his co-signatories to the amendment and the larger number of co-signatories to the letter that they were kind enough to send to us. I congratulate the noble Lord on his dedication in this matter. However, I have some difficulties in accepting the precise proposition of the noble Lord. I have no problem about hypothecating part of the levy for the purpose of research; I accept that precedents are there in the Gambling Act, the Betting, Gaming and Lotteries Act and other measures. I would not presume to take issue with the noble Lord, Lord Pannick, on the question of viability as he has just expounded it. In Committee, I heard noble Lords who are eminent in the fields of medicine and academic research support the case made by the noble Lord, Lord Alton, and I applaud them for that.
However, there is a problem. The insurance industry has told us that it is a willing funder on the basis that the Government will fund the major part of the costs of research. The employer’s liability insurers see themselves as very much the junior partner in that partnership with the state. It was probably not the case with the gambling legislation and the other measures that have been referred to that the Government were expected to more than match the funding that the relevant industry should supply.
These amendments omit to state the implication for government funding of what they would impose on the insurance industry. I wonder why that is so. I can
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imagine that there are good reasons why the amendments do not require the state to commit itself to fund mesothelioma research specifically.
At one time I was Minister for Higher Education and Science; that experience confirmed me in my very strong belief in the arm’s-length system. If we were to abandon that, it would be only a few steps to the relationship between Stalin and Lysenko. The arm’s-length principle is essential for the maintenance of academic freedom and for research quality. Of course, it is legitimate for the Government to take a strategic view and, indeed, for the Department of Health and the National Institute of Health Research to set priorities and make broad allocations. As the noble Lord, Lord Walton of Detchant, told us, when he was a member of the Medical Research Council, the council identified broad priority areas, although it did not think it appropriate to identify individual diseases for which it was determined to fund research. That was because the criterion for making specific awards must be, above all, that of quality. Peer review, not Parliament or the Government, should determine who receives publicly provided funding for research. It follows from that that funding from the state cannot be guaranteed in perpetuity in any particular field of research.
Ample funding has already been provided by the state for which mesothelioma researchers are eligible to bid. The employer’s liability insurers have already provided funds for research and have indicated that they are willing to continue to do so. Therefore, the problem of finding money for research into mesothelioma is not a lack of money on the part of the state or a lack of money forthcoming from the insurers. The problem must be that there has been a lack of high-quality proposals for research in this field. There may have been some quite good proposals; I think that some 80% of bids to the National Institute of Health Research are unsuccessful. Such is the competition for funding from that source that only the very best receive it, so it is not only people who care very strongly about mesothelioma who are disappointed about the lack of funding in any particular field.
Are we to legislate simply to compel the employer’s liability insurers to do what they are already doing and have stated that they are willing to do? If, for good reason, we are not specifying an obligation on the Government, is the Minister none the less proposing to legislate thorough these amendments to place a moral, if not a legal, obligation on the state to fund mesothelioma uniquely, notwithstanding how weak academically particular proposals might be, and notwithstanding the needs that there are for research funding in other fields?
I am left feeling that these amendments, although I completely sympathise with their intention, do not yet articulate a satisfactory position. I think that in a moment the Minister will report to us on his conversations with the noble Earl, Lord Howe, who it is very good to see here listening to this debate, but I suspect that the noble Lord, Lord Alton, ought primarily to be addressing himself to the scientists rather than to the Government.
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4.45 pm
Lord Wigley: My Lords, I support the amendment. I shall address in a moment the points made by the noble Lord, Lord Howarth, but I want to signal my support for Amendment 2 and the associated amendments, which will allow a very small percentage, some 1%, of the levy on active insurers to go towards a supplement for further research into mesothelioma. As we heard from the noble Lord, Lord Alton, a few moments ago, any way of encouraging new people to come into this area of research must be worth while, and that is something that the noble Lord, Lord Howarth, did not address in his remarks. At present the mechanisms are not generating enough research and the research that is currently being undertaken is in danger of being eroded, if not ended. I am also glad that Amendment 24 specifies that the Secretary of State must consult insurers, medical charities and research foundations before making regulations in this respect. I congratulate the noble Lord, Lord Alton, on his perseverance on the matter.
As has been mentioned, in 2011 the British Lung Foundation invested £850,000 in research into mesothelioma, and £400,000 was invested by other charities. In Committee the indications were that it did not appear that much money was coming from the Government. Now, if I understand it correctly, the Medical Research Council has found some rabbits to come out of the hat, and that is all to the good. However, more work clearly needs to be done. If we give due credence to the figures that have been quoted and requoted about the 56,000 people who are in danger of dying from this, if any progress can be made by way of research to reduce the likelihood of those people dying, that is something that we as a House have a duty to undertake. Whether or not this is the appropriate vehicle to do so, it is the vehicle that we have to hand at the moment and we should not lose this opportunity.
The agreement brokered by the British Lung Foundation has meant that over the past three years four large insurance firms have collectively invested £1 million a year into research in this area. I warmly welcome that initiative. It has seen concrete results, as has been mentioned, such as the creation of Europe’s first mesothelioma tissue bank. However, that funding will soon be coming to an end and we need to ensure that the research goes on. The firms that were involved in the initial agreement have indicated that the industry as a whole should be involved in funding future research—that idea comes from them—and that a voluntary agreement would be unworkable. If we are to secure the breakthrough that we need in this area, funding must be made available for research. If that needs legislative underpinning, so be it. Perhaps the Minister can indicate that if the amendment passes, or if he finds another way to reach the same objective when the debate goes on to another place, he will consider including the possibility of a short annual statement on the amount of funding going into mesothelioma research from all sources and the progress that is being made.
Lord Lester of Herne Hill: My Lords, I greatly look forward to the Minister’s reply. I just want to say one sentence. The very first thing I had to do when I came
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to the Bar in 1964 was to act in relation to the Industrial Training Act 1964, which, as I recall, imposed a levy on the building industry in order to subsidise training within the industry, and it worked perfectly well.
The Lord Bishop of Norwich: My Lords, I support this group of amendments and I thank the Minister for his work, which was well illustrated at the beginning of this debate. I knew very little about mesothelioma until I saw its debilitating effects on friends, including the former Bishop of Peterborough, Ian Cundy, who some Members may recall died in 2009. The knowledge that the cause of this cancer has been lurking in one’s body for 20 years or more of active life may suggest in itself that more research into detection and treatment may prove valuable. There is nothing that can be done to rewrite someone’s life history, which may include often unwitting exposure to asbestos while young, but much can be done to promote research into a disease that will kill 2,400 people in the UK this year—the equivalent of wiping out one of Norfolk’s smaller market towns within 12 months. If that sort of tragedy happened it would be front page news but this passes us by too easily.
I am not sure that even now I fully understand why mesothelioma is such a Cinderella of cancer research but this amendment provides a practical way of providing a corrective. The levy proposed is practical and proportionate and it might even stimulate more high-quality researchers to think that this is a worthwhile and reliable area in which to have a sustained work programme over many years. I recognise too that it may even stimulate more voluntary contributions to such research, quite apart from what the Government may give. I also understand that it has some support within the insurance industry. Although I have no expertise in this area, from all that I have read—I am very grateful for the way in which the proposers of this amendment have circulated the House with such material—I hope the Minister will look on this proposal or something like it sympathetically.
Baroness Masham of Ilton: My Lords, I congratulate the Minister on his hard work on this Bill and I am pleased he understands what an awful condition mesothelioma is. It seems this condition has almost been written off as far as research is concerned. However, there are so many developments and advances in modern research that there should be research into all types of tragic conditions. There should always be hope. Research into one condition can often find a cure for another by chance. My noble friend Lord Alton of Liverpool explained the need for research so well. I hope your Lordships will support these amendments. It is good to see Ministers from two departments coming together. This is very hopeful. I support these amendments.
Lord Stoneham of Droxford: My Lords, I start by giving apologies from my noble friend Lord German who should be standing in my place today but is at a family funeral. I join in the praise for the two Front-Bench spokesmen for the dedication and commitment they have given to this legislation.
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The amendment is worthy and I have admiration for the persistence of the noble Lord, Lord Alton. However, this is quite an easy target to win support for medical research and we have to question whether it is an effective amendment. All the evidence we have heard today suggests that it is not necessarily the lack of funding that is the problem but the lack of effective research proposals. That is what we should be addressing. If the insurance companies thought there was effective research to be supported, they would be the first to support it because it would reduce their liability. That is what we need to address. The Minister in his response should help us.
The other important thing is that this levy has been arrived at by negotiation and agreement. It is not just a statutory levy that we are putting in place because we think that it is appropriate. It has been arrived at through agreement and negotiation. Are we saying that we have to start these negotiations again as we will be putting a supplementary payment on the people who have agreed to this levy? We need to know whether this will mean a serious delay to the legislation and its implementation. The Minister should give us answers to the complications that these amendments could cause. We are interested in getting the benefits into the hands of the families who have suffered from this disease.
We also have to ask what we are arguing over. What are the sums of money that we are arguing over? They do not seem to me to be very large. The Minister should therefore tell us—I am sure that he will in his closing remarks—what efforts the Government are going to make to meet some of the requirements for funding if we can find effective research.
This issue seems worthy and worth support and it is very easy to argue for it. But what is the reality and effect of the amendment and what sort of delay will it cause to this legislation? Those are the key issues that the House should be looking at this afternoon.
Lord Deben: My Lords, the noble Lord, Lord Howarth, made an important contribution to this discussion. As a former Minister, I understand precisely the difficulties in which Ministers find themselves, particularly in the medical area, because there are many diseases that are extremely distressing and which, when specifically singled out, can cause all of us to feel that we ought to do something about it. There are few as distressing as this, but there are others in parallel.
It may be that what the Minister has said so far is the right answer, distressing and difficult though it is, particularly in terms of the danger that arises if we start deciding politically which diseases are properly sought after and which are not; this is a dangerous area to be in. My problem is slightly different. I hope that, in his response, my noble friend the Minister will not rely on the Treasury argument of hypothecation. One of the disastrous themes in this country’s legislation is the refusal of the Treasury to accept that hypothecation is an essential part of sensible financial arrangements. Many things would be much better done if there was a clear connection between what people pay through tax and what happens.
I speak with an interest in mind, as a passionate believer in the environment. We will not get people to understand why they should pay congestion charges,
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for example, if the money is not clearly spent on reducing congestion. In other words, there needs to be hypothecation. I remember when I fought hard for and got the first hypothecated tax, the landfill tax, which few would now deny was very important. My noble friend the Health Minister remembers that as well as I do. It was a battle against a theology. I hope that, when the Minister comes to speak, he will do so in the terms of the noble Lord, Lord Howarth, and not in the terms of those who deny this kind of response—not on the basis of ensuring objective decisions by independent judgment, but on the basis that there is something inherently unacceptable about hypothecation.
If this country moved to greater hypothecation, it would be signally more democratic—although it might mean that the Treasury would have less opportunity to get its fingers on the money on its way to that for which it was needed. That is a wholly admirable aim: the effort to ensure that there is a link in the public’s mind between what they pay and what they get is an essential part of our democracy. I hope that, of all the arguments my noble friend uses, he will eschew that one. I would not like to be pushed over the edge to not support him because of the importance of upholding the fine principle of hypothecation.
5 pm
Lord Empey: My Lords, the debate has been very interesting and, at many times, very moving. There is a general consensus that this is a terrible disease on which no proper research has been carried out. We all want to see that fixed. These amendments represent one attempt to achieve that; perhaps the Minister can direct us towards another mechanism.
The right reverend Prelate said that it was a Cinderella of a disease, and I think the arithmetic explains why. Some 56,000 people in this country are expected to die with it over the next number of years, but it is deemed by many drug companies—I suspect, and perhaps some academics—as a disease of the past. Therefore, what is the point of researching it and spending money when it is dying out, literally? Wrong—this is a disease of the future, not of the past. If somebody takes a moment to search the internet for ship-breaking in Bangladesh, Chittagong and all those places, there are whole generations who have yet to develop this disease because the exposure of those people began only in the mid-1980s. They probably would not even have got to the stage of actually developing the disease.
However, we have a dilemma. As the noble Lord, Lord Howarth, rightly said—I have had some responsibility for this area myself—research is a unique area. It is built up around individual institutions, where academics, particularly postgraduate students, are attracted to pursue research, and there are just not enough of them around. We are delighted to see the noble Earl, Lord Howe, on the Front Bench—I have to say that the concept of a brick wall, the term that the Minister used in Committee, and the noble Earl do not go together. Can the Minister and his colleague advise us whether there is any administrative mechanism that either department could use to encourage people to come forward, such as offering specific sums of money for a particular type of research—in other words, offer a carrot—so that there would be something
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for academics to aim for? Is that one solution? I do not care whether it is through legislation or an administrative mechanism—I do not think any of us do—but there is a general feeling that this has to be fixed.
I come from a city that must be close to being the UK capital—maybe after Liverpool—of this disease because of its industrial past. I do not want to delay the Bill because we have made great progress, the Minister has done a good job and we have had a very welcome announcement today. We want to keep the momentum going but the issue remains unresolved. Something must be done, be it through legislation, administrative mechanisms or all government departments working together to encourage the research councils. Has the Minister had a negative response from the insurance companies or any other source to this proposal? Are they threatening that if this were to happen, it may cast a shadow on the whole scheme? I think the House would very much welcome his response. Perhaps, in his winding-up remarks, the Minister could tell us. None of us wants to delay things. I do not think that there is an appetite for any particular scheme, but we want a solution. If the Government can bring it about by another mechanism, I think we would all be pleased.
Lord Kerr of Kinlochard: I had not intended to speak but I am moved to do so by the austere and Robespierre-like logic of the noble Lord, Lord Howarth. He was supported by the noble Lord, Lord Deben, who I strongly agree with in his advice to the Minister to eschew the hypothecation arguments. My advice would be to also eschew the Robespierre argument advanced by the noble Lord, Lord Howarth. The Minister is actually in such a good mood today that I rather hope he is going to accept this amendment.
I do not think that the noble Lord, Lord Howarth, is right. From my passing experience of being involved with and watching the noble Lord, Lord Tugendhat, who I see is in his place, playing a principal part in a university medical research programme, medical research does not seem to have any difficulty in accommodating well placed money from foundations, trusts, charities or private philanthropy. I do not see why a levy should be any different and I reject the reference to Stalin. It seems that this levy could go direct, but if the research councils need to be involved in this at all, it does not follow that the awards displaced would necessarily have been of higher quality.
I do not accept that the purity of the system is affected if money comes in from other streams. Universities seem to have managed to cope with that very well over the years, so we do not need to follow such an austere argument as that of the noble Lord, Lord Howarth. Although I accept that there is a worrying logic to it, in practice it does not work like that.
Lord McKenzie of Luton: My Lords, this has been a wide-ranging debate. I do not think I will be drawn into issues of hypothecation, although it is a tempting subject for debate. Throughout our deliberations on the Bill and before, the noble Lord, Lord Alton, has been passionate and convincing about the case for funding mesothelioma research. He has been supported in this by many noble Lords, including those who have added their names to his amendments, particularly the noble Lords, Lord Walton and Lord Pannick.
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The case that the noble Lord makes is thorough and incontestable. Despite knowledge of this terrible disease and its long latency over many decades, research spending by Governments has been derisory. The noble Lord contrasted the levels of research on diffuse mesothelioma with other cancers to reinforce his point but he acknowledges, as does the noble Lord, Lord Walton—and as indeed do we—that the insurance industry has funded such research in the past. The ABI has made it clear to us in discussion that it stands ready to do so again in the future, if the Government are prepared to play their part. They had said that they would match-fund. I hope that we will hear from the Minister in a moment that the Government will play their part, and how they will do so.
We all recognise that the noble Lord, Lord Alton, has made his case about the need for a national research effort, so the issue is not whether but how this outcome is to be achieved. His approach is focused on the insurance industry’s contribution, which, as he explained, is set down by Amendment 24 as a “Research supplement” raised under regulations under the levy provisions. That supplement could not exceed 1% of that required for payments under the scheme. The proposed regulations must cover how such amounts are to be applied and the role of the scheme administrator. Of itself, the amendment makes no reference to the Government’s obligations. I think that we will hear a different approach from the Minister about the plans that he would wish to develop to attract quality research funding for mesothelioma. If this is right, we need to understand the parameters of this: how much is involved and what is expected of the insurance industry. We also need to understand whether the approach is inconsistent with that of the noble Lord, Lord Alton, which is to raise a levy on insurers.
We have thought long and hard about this and which is the best way forward. Our shared objective is, I believe, to get properly funded research under way as quickly as possible and on a sustainable basis. We all acknowledge the commitment and integrity of the Minister and his desire to fulfil this objective. After hearing the Minister again, the noble Lord, Lord Alton, may consider that he has sufficient reassurance that his objectives will be met, albeit by the administrative route rather than the legislative one. Perhaps he has already concluded that from the extensive discussions he has had to date. If the noble Lord, Lord Alton, is not reassured, and presses his amendment, we are minded to support him in the Lobby.
The Parliamentary Under-Secretary of State, Department of Health (Earl Howe): My Lords, it may be a slight surprise to see a Minister from another Department of State responding to this amendment. However, my noble friend Lord Freud has asked me to speak to it as a reflection of the importance that he and I place on promoting research into mesothelioma. We are both sympathetic to the view that more money should be put into research on this disease. Indeed, before this amendment was tabled, my noble friend and I spent some time exploring possible routes for funding. It is the fruits of those discussions that I shall now cover. However, the mechanism proposed in this amendment is not the best way to achieve the objective that the noble Lord, Lord Alton, is aiming at.
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There are a number of reasons for this. In Committee, my noble friend set out some technical but none the less important arguments as to why the Government are resistant to the idea of a supplementary levy for mesothelioma research. I will not rehearse those arguments again and my noble friend Lord Deben need not worry as I am not going to rely on them at all. I need to stress that any additional research charge of the kind proposed by the noble Lord, Lord Alton, would, like all taxation, have to be paid into the Consolidated Fund and, if hypothecated, would then have to be paid out by the Treasury for a specific purpose. The Treasury does not normally handle tax income in this way, and there would need to be more convincing arguments before it could consider doing so for mesothelioma research.
The more substantive problem with the amendment is to do with research policy. As noble Lords will be aware—and the noble Lord, Lord Howarth, pointed to this—there is a fundamental, 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 is a good reason for this. There will always be more proposals for high-quality medical research overall than there are resources available for funding, and it is arguably unethical to support second-rate work in a particular area at the expense of higher-quality work in another equally important one. Noble Lords will understand that this is why, as a rule, public sector funders of research do not ring-fence funds for particular diseases. It was the same principle that prompted Dame Sally Davies to restructure the research funding that the Department of Health was putting into the NHS over many years, so that funds would flow, as they now do, to the most important, highest-quality research.
In the case of mesothelioma, the real issue is not just the money; it is the quality of the research being proposed. How can we try to ensure that the research proposals in this field reach the quality threshold required to secure funding? If that threshold is reached, funding is much less of a difficulty; indeed there is no need to think about the forcible gathering of funds from insurers. If noble Lords agree, the goal is how we stimulate high-quality research proposals without undermining the country’s strategic research mechanisms.
Lord Kerr of Kinlochard: We have heard from Robespierre. I hope we are not now hearing from Danton. Will the Minister accept that most foundation, trust, charity or philanthropic money for medical research is earmarked for particular diseases or research topics? What is the difference between that and a levy from the industry for this disease?
5.15 pm
Earl Howe: My Lords, I accept that fully and I will come to that point in a second.
Certainly there was a blockage in the research process, but it was not total. There is good news. As the noble Lord, Lord Alton, informed us, spending on mesothelioma research is not as low as noble Lords might believe from the discussions in Committee. The latest figures
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from the Medical Research Council show that its annual spend on mesothelioma research rose from £0.8 million in 2009-10 to £2.4 million in 2011-12. We should not belittle those figures. That is in addition to the research supported by the £1 million a year donated by insurance companies to the British Lung Foundation, and research supported by the National Institute for Health Research. Therefore, on the ability of the system to support publicly funded mesothelioma research, we are not knocking at a closed door.
My noble friend Lord Stoneham is right that the issue that is holding back progress on research into mesothelioma is not lack of funding but the lack of sufficient high-quality research applications. This is an issue that we in the Department of Health, working with the National Institute for Health Research, have been seeking to address. I will now set out what we propose. There are four elements to it.
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. Good applications will succeed.
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. The aim is for the event to act as a catalyst for new ideas that will further boost research into mesothelioma. I was very interested in what the noble Lord, Lord McKenzie, told us about the offer of matched funding from the ABI. I look forward to hearing more about that.
As my noble friend Lord Freud mentioned, on 25 July in the Palace of Westminster precincts, he and I will co-host an event run by the British Lung Foundation that will focus on mesothelioma. I will take this opportunity to invite noble Lords to join us to hear about current research and to get a family perspective on the disease.
The four steps that I have set out offer a better and much more realistic way of achieving what we all want to see happen. The problem with the remedy that the noble Lord proposed is that it will not of itself deliver that objective. I could sum up the issue by saying that the availability of funds does not guarantee the spending of funds. Nor does it guarantee the quality of research on which such funds would be spent. It is also worth
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making the point that it would create a precedent that might encourage other and perhaps less deserving interest groups to seek special treatment for a disease about which they care passionately.
I hope the noble Lord will recognise that his amendment has galvanised the Government into action. He can credit himself with having achieved a valuable outcome by tabling it. I hope that he will consider not pressing it. I have given undertakings today that I will be keen to take forward with him and with all relevant stakeholders.
Lord Wigley: May I ask the noble Earl to respond to my earlier question on whether, in the context of the four proposals that he has brought forward, there might be a mechanism for some form of annual report on the progress of mesothelioma research so that we do not lose focus on this important issue?
Earl Howe: I think that there is scope for that, whether it is a stand-alone report or is built automatically into the report that is produced by the department or the MRC. I would be happy to take that idea forward.
Lord Walton of Detchant: Before the Minister sits down and before my noble friend responds, perhaps I may ask the Minister this question. Let us suppose that, in the light of the developments and proposals that he has outlined, the insurance industry—the ABI—decides, in the goodness of its heart and bearing in mind the importance of this problem, that it wishes to make an ongoing and regular contribution to research in this field. Would the National Institute for Health Research be precluded from accepting non-government funds or would such funding have to be channelled, for example, through the cancer research campaign?
Earl Howe: A very great deal of the research conducted in this country is funded by different sources. It is funded by the Government, charities, universities, and industry. Nothing in the arrangements that I have outlined precludes a joint arrangement for funding mesothelioma research, which is why I welcomed the indication that the noble Lord, Lord McKenzie, gave about the ABI and the possibility of augmenting whatever funds are forthcoming from the MRC or the NIHR. That is an important point to make. I think I have said enough. The ball is in the noble Lord’s court.
Lord Alton of Liverpool: My Lords, I am always grateful to the noble Earl and I know that the House will appreciate what he has said about the four steps that he intends to take. I think he would agree, though, that there is nothing incompatible in taking those very welcome steps and supporting the spirit of this amendment. I made it clear when I spoke at Second Reading, in Committee and again today that if the Government—during the many discussions that the noble Lord, Lord Freud, and I have had about this—had been willing to accept the principle and come forward with their own amendment, I would have been happy to withdraw my own. The principle that I have been trying to underline is the need for a statutory requirement to step up to the plate to deal with this killer disease, which we all agree will take any number of lives—an estimated 56,000 before the disease completes its first
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wave. We heard in the quotations I presented to the House earlier today that there is a possibility that, in the BRIC countries and with new forms of asbestos being used worldwide, it will not be 56,000 who die, but many more.
The noble Earl has suggested that if such a levy were imposed, it would be swallowed up into Treasury funds and there would be no guarantee that it would then be used for its intended purpose. I do not think that any of us really believe that that would be possible. If Parliament has legislated that a levy of up to 1% should be imposed—that is all; it is a levy inside a levy and what this entire Bill is about—there is no reason why that money should not then be used for this specific purpose. The noble Lord has already said that this should be a priority area.
The noble Earl has said that there should be competitive research proposals; very good research proposals have been put forward but, unfortunately, have not gained traction because the funding has not been available for them. It has been a Catch-22 situation. It was also said that it would be unethical to support second-rate work. Nobody in your Lordships’ House would suggest otherwise—of course we accept that there should be no second-rate work and, through the Medical Research Council and specified outside bodies, an evaluation would be made of the quality of that work and of the proposals that have been put forward.
The noble Earl said that around £2 million will now be made available, and that is welcome. However, the House should just bear in mind, for example, the £22 million being made available this year for bowel cancer, the £41 million for breast cancer, the £11.5 million for lung cancer and the £32 million for leukaemia. Those comparisons show the position in which mesothelioma still appears in this terrible league table.
The noble Earl also said, quite rightly—and the noble Lord, Lord Howarth, touched on this, too—that we should protect the purity of the system, but my noble friend Lord Kerr of Kinlochard dealt admirably with that argument and I can add nothing more to what he said. No one wishes to pollute the process but the Bill before the House is about one specific disease, and that is why this amendment is before your Lordships. It is not that we are being asked to set a precedent for any number of other things. Mesothelioma has a unique characteristic. The reason that the noble Lord has been able to negotiate with the ABI and the industry is that, for instance, smoking cigarettes cannot lead to mesothelioma. This disease is specific and that is why the industry has accepted its responsibilities in this regard. Therefore, it is different from other diseases, and that is why we were able not only to have this Bill but to exclude from it even other asbestos-related diseases, which cannot be said to be specific, as mesothelioma is. I think that that is a perfectly good reason for attaching to the Bill an amendment that deals specifically with this disease.
I am extremely grateful to everyone who has participated in this debate. I am sure that we listened with great care to my noble friend Lord Walton of Detchant, who said that this could make a massive contribution and that it could pave the way for a cure. The noble Lord, Lord Selsdon, was right when he
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asked why it was not done a long time ago. As long ago as 1965, the Sunday Time sreported on work that had been done by the London School of Hygiene and Tropical Medicine. In cities such as Belfast, Liverpool, Glasgow and other epicentres of the disease, it had identified the nature of mesothelioma, as well as its very long hibernation period, alluded to by the right reverend Prelate the Bishop of Norwich, before it had its terrible impact.
I doubt that there are many of your Lordships who have not come across people who have contracted this disease and died within the two years—that is all it takes—from the time that it is diagnosed until death. The right reverend Prelate referred to the late Bishop of Peterborough. When we dealt with the LASPO legislation last year, the noble Lord, Lord McNally, told a deeply moving story at the Dispatch Box about his sister, who had died as a result of washing the dungarees and overalls of her husband, who had worked in the industry. This is something that can affect us all and we need to do something about it urgently.
The noble Lord, Lord Pannick, said that it might be claimed that the amendment is not viable. That has not been said in the debate today, yet it was said in the letter that was distributed on Monday. The amendment deliberately mimics Clause 13 of the Bill so that it does nothing that the Bill itself is not doing. It cannot possibly be challenged under the Human Rights Act, but perhaps we could be challenged under that Act by victims of mesothelioma if we fail to do enough or take the opportunity to provide for proper research to deal with this disease.
The noble Lord, Lord Wigley, said that the mechanisms that we have at the moment are not generating the research but he said that this vehicle is at hand. There is no reason at all why this should delay the legislation. As I told your Lordships in my opening remarks, I met with the ABI. The industry had expressed no opposition; indeed, it has been generous in providing what funds there have been in the past towards dealing with this disease. Therefore, there is already a precedent here. I am certain that if the Government were to say that they would make available matching money, even more funds would be made available by the industry. The noble Lord, Lord Howarth, touched on that point, and rightly so. Yes, there is a moral obligation. Because of the privileges issue, it would not be appropriate to include that provison or obligation here, but there is no reason why it could not be attended to in another place and there is no reason at all why this should become a matter for parliamentary ping-pong.
The mortality rate for most cancers is falling while it continues to rise for mesothelioma. There are humane and altruistic reasons for supporting funding for mesothelioma research, but for the Government and the insurance industry there are straightforward financial considerations, too. It would be impossible to eradicate all asbestos from our homes, schools, hospitals, factories and offices.
The Bill represents a genuine desire to act justly to those who have been afflicted with mesothelioma, which is why I have supported the noble Lord, Lord Freud, throughout in placing the Bill before the House. However,
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the one certain way to prevent deaths from mesothelioma will be to find a cure. That will not happen without adequate resources and that in turn requires political will. That is why I thank all those who have spoken today in the debate and who have supported the amendment. I would like to test the will of the House.
5.30 pm
Earl Howe: Before the noble Lord finally decides what to do with his amendment, may I just explain why the Government have not brought forward their own amendment, which was one of his criticisms? We do not believe that a legislative route is necessary. We believe—as the noble Lord, Lord Empey, indicated—that we can do this in other ways. We can give the process exactly the kind of kick-start that was referred to in the debate much more effectively than can this amendment. Funders for research build areas for research by bringing researchers and clinicians together, not by throwing money at a problem, which is, I am afraid, what this amendment would do.
Lord Alton of Liverpool: My Lords, this is not about throwing money at problems. That is certainly something that I have always eschewed throughout the whole of my time in politics. You have to demonstrate the case and there is a case here. If 56,000 of our countrymen are going to die of this disease over the next 30 years or so, we have to find adequate resources to tackle mesothelioma. That is not being done by this Bill. We have a rare opportunity to do something about it.
Lord Walton of Detchant: Before my noble friend sits down and eventually decides what action he proposes to take, I wish to ask him whether he feels that the important developments referred to by the noble Earl, Lord Howe, relating to forthcoming meetings between the Medical Research Council, the NIHR and other organisations, might not—at the moment—be a useful way forward?
Lord Alton of Liverpool: I am grateful to my noble friend and yes, of course I am delighted that those meetings are going to happen. The noble Earl was kind enough to say that perhaps the debates that have been precipitated on this issue in Committee, at Second Reading and again today have helped to bring that about. However, the moment will pass and all of us who sit in this House know that once the legislative vehicle has moved on, the opportunity to make something happen disappears into the ether. That is why I intend to press this to a vote and to test the will of your Lordships’ House.
5.32 pm
Mesothelioma Bill [HL]: Impact
2.52 pm
Asked by Lord Wills
To ask Her Majesty’s Government what assessment they have made of the impact on insurance companies’ balance sheets of paying mesothelioma sufferers 100 per cent of the compensation to which they are entitled under the terms of the scheme set out in the Mesothelioma Bill [HL].
The Parliamentary Under-Secretary of State, Department for Work and Pensions (Lord Freud): My Lords, over the first 10 years of the scheme, a tariff set at 100% of average civil compensation would total £451 million. That is £129 million more than the current proposals, which are forecast to cost £322 million.
Lord Wills: I thank the Minister for that Answer. Indeed, I thank him for all that he has done personally to advance the cause of all those suffering from this dreadful disease. However, does he recognise the deep frustration felt by many in your Lordships’ House, and many outside as well, that the Medical Research Council seems unable to launch fundamental research into this dreadful disease, even when the insurers are prepared to pay millions to fund it? Does he also recognise the deep sense of injustice felt by so many that the insurers are refusing to pay 100% of all claims to all those who are entitled to them?
Lord Freud: My Lords, the point about research is that it is pretty complicated, one reason being that the Medical Research Council is constrained by the quality of the research proposals presented to it. There is a bit of a chicken-and-egg situation going on, as I see it, and I am working with my noble friend Lord Howe and the British Lung Foundation to break that situation. We are hosting a seminar on the importance of mesothelioma research shortly to try to stimulate the proposals for funding. As for the second aspect of the question, clearly there has been much debate on the exact level of compensation. In the end, this has been a very complicated and intricate deal to make sure that we can get good sums of money. We are getting an average of £87,000 a head to people who suffer from this terrible disease who have not been able to find any compensation whatever.
Lord Wigley: My Lords, those who have suffered industrial lung diseases get the full level of compensation under the 1979 pneumoconiosis Act, when they cannot identify their former employers to sue them, so by virtue of what reasoning should there be a scaling down for those who suffer from mesothelioma and cannot identify their insurance policies? They suffer equally and have great need of those funds.
Lord Freud: My Lords, I know that everyone in this House would agree with the proposition that we want to get as much money as we possibly can to mesothelioma sufferers, particularly those who, through no fault of
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their own, have not been able to trace the insurer that should be paying them the employers’ liability compensation. The reality is that we cannot trace the insurer in roughly 10% of cases. We are trying to make sure that we trace as many as possible. They will get the full amount, and then get a payment—not quite as much as I would want, but a safe, sustainable payment, for this group of people, and that is a lot better than the nothing they are getting currently.
Lord German: My Lords, I congratulate the Minister on bringing the good insurance companies to provide compensation for this fatal industrial disease for those who are non-traceable or wayward in their insurance. Will my noble friend tell me what guarantees he has that the insurance companies will not simply pass on the costs to their customers in their bills? If he has no guarantee of that, it might well happen anyway. Surely it would be worth the little extra it would cost to bring that 70% closer to 100% in order to be able to give compensation and help to sufferers and their suffering families.
Lord Freud: My Lords, as my noble friend pointed out, this scheme is based on a levy on insurers who are active in the market today, not those who may have actually been responsible for the historic liability. It is very difficult to assess who takes the real burden of the cost. I have been very anxious to get to a position where I am as assured as I can be that the bulk of that cost is carried by the insurance industry, not by British industry as a whole. The risk is that if the levy is too high, the amount would have to be passed on by the industry.
The Lord Bishop of Ripon and Leeds: My Lords, not so long ago, I was at the bedside of one of our clergy who died of mesothelioma, having not been diagnosed until very late. Will the Minister tell us what part sufferers themselves, their relatives and support groups will play in managing what sometimes comes over as an agreement and arrangement between government and insurance agencies?
Lord Freud:Let me make it absolutely clear that we have been acting as the agents of the sufferers in our discussions with the insurance industry. The idea that there is some kind of cosy relationship between government and the insurance industry is absolutely not true. It has been a really tough business to get a deal through. I talk regularly to victims’ groups and lawyers. I get their support and as we develop the next stage, which is a practical process, I will be getting their views and having them very much in mind.
Lord Alton of Liverpool: Will the Minister confirm that with people dying of mesothelioma at a rate of 2,000 a year the Government have predicted a further 56,000 deaths over the next 30 years? Will he tell the House the total level of compensation that will have to be paid out during that period to meet those claims? Will he contrast that with the not a penny piece that is currently being spent on research into finding cures
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for mesothelioma? In that context, will he give further consideration to the letter sent to him by more than 20 Members of your Lordships’ House from all sides of the House asking for public and insurance industry money to be used in order to do more to find a cure for this terrible disease that will take a further 56,000 lives in the next 30 years?
Lord Freud: My Lords, that is precisely the point. This is a terrible disease. It is about to peak in the next couple of years. That is why I have been in such a hurry to provide a scheme for those who cannot get compensation. I cannot do the sums in my head, but the payments are clearly in the many hundreds of millions. We have had much discussion about the lack of research in this area compared with other cancers. It is something that I and my noble friend Lord Howe are concerned about. We are going to try to launch that. There are two aspects: whether the Medical Research Council will find it valuable to do the research, and the insurance industry, which has been providing the only substantial source of funding until now in this terrible area.

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