Mesothelioma – Plea for Research Funding To Combat A Disease Which Will Claim 56,000 More Britsih Lives.


Amendment 10

Moved by Lord Alton of Liverpool: June 5th 2013

10: Clause 2, page 1, line 17, leave out “25 July 2012” and insert “1 February 2010”

Lord Alton of Liverpool: My Lords, Amendment 10 has already been dealt with in the debate we have just had, so my remarks will concentrate entirely on Amendment 31, which is grouped with it.

Earlier in our proceedings, I recalled that in 1965 the Sunday Times reported on how an epidemiological investigation by Newhouse and Thompson, undertaken for the London School of Hygiene and Tropical Medicine, had shed light on the origins and nature of this terrible disease, finally laying to rest the scepticism of some pathologists who had until that time disputed its existence and its long period of hibernation.

More than three decades earlier in 1930, the Merewether report had warned of a latency for asbestosis of some 25 years. No one can reasonably claim, therefore, that the industry, Government or employers did not understand the risks that workers faced. Yet, staggeringly, this vicious disease has had Cinderella status when it comes to research spending. It is not hyperbole or overstatement to assert that it is nothing short of a national scandal that a disease predicted to kill a further 56,000 British citizens between 2014 and 2044 receives not a penny of state funding for medical and scientific research into understanding its nature and identifying cures. What other disease that kills 2,400 British people every year has to rely entirely on what money can be scraped together from voluntary organisations such as the admirable British Lung Foundation?

In 2011, the British Lung Foundation invested £1 million in research. Here I must pay tribute to those four insurance companies that voluntarily supported that scheme and provided that money. The rest of the voluntary sector invested £400,000. By contrast, the Government invested nothing at all. This is scandalous when we are dealing with a disease that kills so many people and when we compare it with the fabulous sums of money that the noble Lord, Lord James, referred to in the previous group of amendments—billions of pounds being invested compared with £1.4 million given voluntarily, without a penny piece of state funding, for research into this shocking disease.

Back in 1965, the Sunday Times also reported, on the back of stories emerging from London, Belfast, Newcastle, Leeds and Liverpool, some of which have been referred to in our earlier debates, that research would be conducted to examine causes and find cures. That was 50 years ago and we are still waiting for a research base that matches the scale of the problem. Fifty years later there is still no cure, and most people

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die within two years of diagnosis. The UK mesothelioma mortality rate is the highest in the world. The number of deaths is roughly double the number due to cervical cancer, for example.

My amendment seeks simply to open a debate about the lack of funding for mesothelioma research. Paradoxically, if we could find a cure, it would not only eliminate horrendous human suffering, it would also eliminate the need for the millions of pounds of compensation that we are debating during these Committee proceedings. So there are humane and altruistic reasons for supporting funding of mesothelioma research, but for the Government and the insurance industry there are straightforward financial considerations too. As well as adequate compensation, we should be prioritising much more of our time and money to finding a cure to prevent the ravages of this fatal disease. Of course it would be impossible to eradicate all asbestos from our homes, schools, hospitals, factories and offices, and it is welcome that there is a general desire to act justly to those who have been afflicted with mesothelioma. But 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.

I said that mesothelioma has a Cinderella status. Let me illustrate what I mean. Contrast £1.4 million spent on mesothelioma research with the £22 million for bowel cancer, the £41 million for breast cancer, the £11.5 million for lung cancer, the £32 million for leukaemia. Indeed, there are 17 other forms of cancer for which far more research resources are reserved than for mesothelioma. Mesothelioma is quite literally at the bottom of that list.

In 2011 the voluntary sector invested £5 million in myeloma research and £5.6 million on malignant melanoma, the cancers immediately above and below mesothelioma in the table of mortality figures. Yet, even with such limited funds, there have been some exciting developments. I think that some of my noble friends will refer to these. They include the creation of the world’s first mesothelioma tissue bank for researchers, a transatlantic collaborative study of the genetic make-up of mesothelioma and work on overcoming resistance to drugs used to treat the disease. It shows what can be done with the right investment. We have an opportunity in the course of the proceedings of this Committee to create a sustainable fund for mesothelioma research to help ensure that future generations do not have to suffer in the same way that so many have in the past.

At Second Reading, I gave the Minister a letter, which was then circulated in your Lordships’ House, and has been signed by 20 noble Lords and Baronesses from right across your Lordships’ House. Subsequently a letter supporting the same points was published in the Times. This letter underlines the breadth of support throughout the House for the principles that underpin this amendment. Not necessarily the detail—I fully accept that this could be rewritten between now and Report stage, that it can be modified and changed. It is the principle that I am primarily interested in at this Committee stage and that is the point that I will be most pressing the Minister on.

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This proposal enjoys the support of many Members of your Lordships’ House, the British Lung Foundation and the victim support groups. The proposal involves a small administrative or membership fee to those companies in the scheme and would raise £1.5 million a year. It would have no implications for the public purse, although I hope that the Government will consider providing at least match funding—it is, after all, receiving millions of pounds from the new scheme. I hope that the Minister, when he comes to reply, will tell us what money his Government will pledge for research and what progress he is making with the Department of Health, the Medical Research Council and the Treasury in putting together a scheme that will address this issue. Such an initiative will bring justice and hope to those who are blighted by a disease that was none of their making.

The Minister met with me on Monday, as I said earlier, and again I am grateful to him for the patience and courtesy that he always shows in dealing with this and the proceedings of the Committee. We discussed the detail of this amendment. One aspect that I know that the Minister does not like is the £10,000 levy that would be paid by all insurance companies. The Minister feels that if there were such a scheme it would better if it were tied to market share or turnover, rather as the levy for compensation is, in the context of the Bill as a whole. I accept that this approach would be in line with the way in which the compensation clauses of the Bill work and I would be very happy to modify the amendment to accommodate that point. A proportionate levy would be equitable and wholly acceptable to me. When the Minister comes to reply, will he indicate whether he would like to bring forward a modified amendment on Report to reflect that kind of change on that kind of basis?

6 pm

There is then the vexed question of hypothecation. I have drawn to the Minister’s attention, and I also draw it to the attention of the Committee, the precedent of Section 123 of the Gambling Act 2005. It contains a provision for a hypothecated industry levy. That counters the suggestion that I have heard that it is somehow impossible to hypothecate in legislation. That the Section 123 power may not yet have been exercised is entirely irrelevant. The fact that the levy provided for in the Gambling Act has not so far been used is neither here nor there. In that case, the idea was to have a back-up in case voluntary systems proved inadequate. It may simply be that it has therefore not been necessary to impose a formal levy so far, and that, too, is a very helpful precedent when considering what we want to do in this amendment. It is a power that Parliament has, rightly, chosen to place on the face of legislation, and in this instance we should do precisely the same. Ultimately, it will then be a question of political will.

Then there is the much invoked Human Rights Act. The Minister in charge of the Gambling Act 2005—the late Lord McIntosh of Haringey—felt able to make a statement under Section 19(1)(a) of the Human Rights Act 1998 that the Bill was compatible with the convention rights, despite it containing a clause, which eventually became Section 123, providing for the imposition of a

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hypothetical industry levy very similar in nature to the proposal in my amendment. It would be very helpful if the Minister could explain how the human rights situation might differ between Section 123 of the Gambling Act and my own amendment.

The Minister has also said that a government department cannot raise funds for activities outwith the department’s remit. I should be grateful if he could explain in rather greater detail to the Committee why that is the case. I have sought the opinion of a barrister—one who specialises in drafting legislation—and he says that that is simply not the case because there is no such thing as a single government department in law and, anyway, anyone can do anything that Parliament says they can do. After quite a long time in either this place or the other place, I hope that that is the purpose of Committees precisely such as this. Provided that the clause is clear about who can do what there is no bar on any Minister doing, anything to raise money for a statutory purpose may be permitted.

Finally, there is the question of joined-up government. Perhaps the noble Lord can tell us about the conversations that he has rightly had with his noble friend Lord Howe about the possibility of the Department of Health being included in the legislation as the agency through which funds could be channelled for research. What were the grounds on which that department declined to participate in such a partnership? I understand that that was the subject of a meeting between the Minister and his noble friend Lord Howe earlier this year.

Given that there is a valid precedent in law in the form of the Gambling Act, a solution to any human rights objection—that is, a proportionate levy—and a clear power for government departments to raise money outwith their remits, what exactly are the outstanding objections to the proposal? Surely it is the principle contained in this amendment, with which I know the noble Lord will have some sympathy. Surely, if he does have sympathy with that principle, he should now help us all to overcome any of these objections, rather than raising objections. Accepting this amendment or something like it—the principle of it—would finally remove mesothelioma’s Cinderella status and offer hope to some of those 56,000 British citizens who will die of this disease if no cure is found. I beg to move.

Lord Walton of Detchant: My Lords, it is a pleasure to follow the noble Lord, Lord Alton, particularly in the light of the lucid and forceful way in which he has proposed this amendment. I have added my name to the amendment because I believe very strongly that, as he has pointed out, the amount of funding in this country that has been devoted to research into mesothelioma, its causation, its development and its treatment has been miniscule. I join him in paying tribute to the contribution over the years made by the voluntary organisation, the British Lung Foundation, in examining ways in which research into this wretched disease can be conducted. However, the Government’s contribution to this research—for instance, through the Medical Research Council, of which I was once a member—has been minimal. Therefore, I am very much in favour of the principle underlying this amendment.

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I used to teach my medical students that while there are plenty of incurable diseases in medicine, there are none that may not have their effects modified by pharmacological, physical or psychological means. Mesothelioma is almost an exception to that rule, although it is clear that in the early stages of the disease certain physical mechanisms can alleviate some of its worst effects. The tragedy of mesothelioma is that the deposits of this cancerous process are laid down in the pleural cavity, between the surface of the lung and the internal surface of the chest wall. Gradually, as those deposits increase, the actual flexibility of the movement of the chest wall—in the muscular contractions which are responsible for our involuntary taking in and expiring of air—is slowly but progressively lessened, so that in the end the patient is almost subject to the feeling of having a straitjacket around their chest that prevents them from respiring. Eventually, it is fatal. Happily, there are mechanisms with drugs, sedatives and many other things that can help to ease the terminal phases. Nevertheless, the end result is tragic and appalling for anyone who has witnessed it.

A colleague of mine who was a consultant neurologist developed mesothelioma—the result, it appears, of being as a youth a keen club cricketer in villages in County Durham. It turned out that the changing room in which he regularly changed before appearing on the cricket field was lined with asbestos. That was eventually thought to have been the source from which he acquired this disease. It is a tragic condition and it deserves close and careful attention.

I also used to teach my medical students that today’s discovery in basic medical science brings tomorrow’s practical development in patient care. As yet, there has been no such basic discovery in the science underlying the causation and development of mesothelioma and, as yet, no drug has been discovered that is capable of reducing that progressive, cancerous deposit and the progressive process of strangulation. That is not to say that there have not been some limited discoveries that have benefited individual patients, but much more is needed.

I know what the Minister will say: that an amendment such as this has no place in a Bill or a statutory instrument because it is, in a sense, permissive. I can understand fully the view that he is going to take in that regard. However, I do not believe that it is beyond the wit of man, and certainly not beyond the wit of the Minister, to achieve some kind of Machiavellian political intervention or manipulation enabling the principles underlying this amendment to be fulfilled in law.

Although I have given my name to Amendment 31, I must say that I disagree with its last phrase. It says that,

“the funds raised through this charge shall be remitted to a competent research institution to fund research to find new treatments for mesothelioma”.

It should say “a competent research-granting organisation”. What could be better than the Government’s own research arm, the National Institute for Health Research, which is chaired by the Government’s Chief Medical Officer, Sally Davies? It could be the perfect example. I hope very much that the Government

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will find the means to fulfil the principle underlying this crucial amendment in managing to persuade these insurance companies— perhaps “persuasion” is not exactly the right word; it might need something a bit firmer to get the money out of those bodies—to enable the National Institute for Health Research to fund crucial research on this devastating disease. It deserves everything that we can put into it and a great more than we are already doing.

Baroness Butler-Sloss: My Lords, I, too, have put my name to Amendment 31. It is with some hesitation that I rise to speak after the two formidable speeches that we have just heard. Having put my name to the amendment, though, I want to say something to support it. It is indeed a modest amendment but it has enormous potential advantages for important research seeking new treatment and a possible cure. We have already heard from the noble Lord, Lord Walton of Detchant, what he thinks could be done and why it needs to be done. Of course, I defer to him.

As one of three judges in the Court of Appeal, I heard a number of these cases, and each story was tragic. Although I was a judge for 35 years, these stories have remained with me. We know that currently there is no cure. We know that currently the treatment is poor compared with that for other forms of cancer. It is crucial and urgent that we have proper research. As the noble Lord, Lord Alton of Liverpool, has said, it is a scandal that this is so poorly supported, when it is a killer but other forms of cancer can be treated and people can live for a long time. Sufferers die two years after the diagnosis—it is like motor neurone disease, and even that, as I understand it, gets more research funding than this does. It is extraordinary that the people who suffer from it are not properly regarded by the state or indeed by insurers. It is high time that the lack of financial support should be remedied with this Bill, at least to some extent.

I very much support the principle of the amendment. Like the noble Lord, Lord Walton of Detchant, I do not entirely support the wording. I do not think that matters because we are not going to vote on it today, and if the Government can come up with better wording and be supportive, that is exactly as it should be. The amount of money that would be raised under the present scheme is a modest £1.5 million. It would be much better if the Government felt able to match it; that would be valuable.

I was entertained by the reference by the noble Lord, Lord Alton of Liverpool, to the Gambling Act, which shows a very useful precedent. It is just possible that if some law were passed in this Bill, we could then to go the insurers on a voluntary basis and say, “If you don’t, it will be backed up by primary legislation”. So we want it there as a spur. If that can be done in gambling, I really do not see why it cannot be done in mesothelioma.

Lord Wigley: My Lords, I, too, have added my name to Amendment 31. I thank the noble Lord, Lord Alton, for the diligent commitment that he has shown to these issues, which I know is appreciated by all

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concerned. He deserves to succeed with this amendment. Following on from what the noble and learned Baroness said a moment ago with regard to the potential leverage that an amendment such as this could carry, it reminded me of the term used in chess that the threat is always more dangerous than the execution. Having this in the armoury, I suspect, would be very useful indeed.

Under the proposed new clause, the scheme administrators would be permitted to charge an additional annual administration fee of some £10,000 from each insurer. One can argue, certainly, that there could be a sliding scale there. That is detail; it is the principle that we are after here. The clause sets out that all funds raised from this fee would be invested into research for treatments for this awful disease. Listening to the noble Lord, Lord Walton, speak from his own experience of the medical world, we see the pressing need for these funds to be made available. They should be available already. They should be coming from the normal course of research funding. But as they are not, we need to do something and there is an opportunity to do so here.

6.15 pm

The Department for Work and Pensions has estimated that 150 insurance firms are active in the employer’s liability insurance market. If a £10,000 annual fee were charged to each of those bodies it would raise, as has been suggested, £1.5 million every year towards mesothelioma research. That would be a tremendous sum. Funding of that order could make a difference. As has been said, with some 2,400 people a year dying in the UK from this debilitating disease—the highest rate in the world—something needs to be done. The British Lung Foundation estimates that over the next 30 years, as a number of colleagues have mentioned, some 50,000 people will die from it if the cure is not found. There is a need to put the resources in to find a cure and to act now, surely, for the sake of the people for whom the clock is already ticking.

To put this into context, according to the figures obtained by the National Cancer Research Institute, at present the British Lung Foundation provides the bulk of the research funding. My understanding is that in 2011 it was able to put in only some £850,000, but that was certainly worth while, while only £400,000 was invested in mesothelioma research by other charities. None of the funding came from the Government.

For the past three years, four leading insurance firms have invested about £1 million a year between them in mesothelioma research, following an agreement brokered by the British Lung Foundation, and we are indebted to the work that it has done. As a result of this, Europe’s first mesothelioma tissue bank has been created in order to collect and store biological tissue from mesothelioma patients, which can be used in research. I understand that research is currently ongoing to identify the genetic architecture of this disease but, as the agreement was only for a three-year period, that funding will soon come to an end. The small number of insurance firms that funded this initial research have indicated, as I understand it, that any long-term funding into treatments and possible cures for this disease should be funded by the industry more widely.

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They have also argued that a voluntary agreement covering all the firms involved in the employer’s liability insurance market would be unworkable and, as a result, legislative underpinning would be necessary. That is where we started and it is where I conclude. I hope that the Government will act.

Lord Kakkar: My Lords, I support Amendment 31. In doing so, I declare my interest as professor of surgery at University College London, an institution that is actively involved in cancer research. We have heard about the importance of mesothelioma and the impact that it is going to have in the next 30 years with regard to the deaths of many tens of thousands of our fellow citizens. However, I wish to build on the comments of my noble friend Lord Walton of Detchant, who has spoken with considerable eloquence about the importance of research. This is a disease that is going to afflict many of our fellow citizens but there is no strategic defined national research initiative for it. That is quite striking, and it is a serious deficiency in the otherwise hugely successful and important approach that successive Governments have taken towards having a national research effort, conducted either through the work of the Medical Research Council or through the National Institute for Health Research.

We have heard about the important role that four insurance companies have played to date, providing some £1 million a year between them to support research in this area, supplemented by important charitable contributions. We cannot underestimate the importance of even this small contribution to having kick-started research and academic interest in this area. The meso-bank that we have heard of is a very important national initiative that will have global significance, because collecting tissue from patients afflicted with mesothelioma provides the opportunity for fundamental and translational research on those tissue samples to ensure that there is better understanding of the disease.

As we have heard, there is no opportunity at all to develop either better diagnostics or indeed treatments and cures for this particular form of malignant disease unless we understand fundamentally its biology. Collecting tissue using tissue banks and bio-banks is the basis of modern medical research, and it would not have been possible without the contribution of insurance companies and the work of the British Lung Foundation in having facilitated that. However, this work—these bio-banks, the meso-bank—needs to continue in future.

On that basis, large academic groups have started to focus on the question of mesothelioma. That would not have happened without the funds currently available. Scientists, academics and clinicians have come together, now in reasonable numbers, to focus on the question of mesothelioma as a result of recognising that funds to support their research would be available. If the signal cannot be sent in future that funding for research in this area will be available, regrettably, no research will be undertaken. That is the simple truth: without funding, research cannot be promoted and completed.

Interesting work is being undertaken at the Sanger Institute in Cambridge as a result of the limited funding currently available, which has allowed the first molecular

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characterisation of mesothelioma, providing a better understanding of genetic mutation and signalling pathway defects which could offer targets for future drug development. A disease in a similar situation to mesothelioma some years ago was melanoma, the malignant skin cancer. As a result of research focus and a better understanding of the molecular biology of melanoma, we can now offer patients biological therapies targeted specifically at the genetic and signalling defects that characterise their cancers, improving the outlook for certain patients with certain types of melanoma. It is surely possible to conceive that, with appropriate research funding, the same might be achieved for mesothelioma.

In addition to those two important areas—the meso-bank and genetic and molecular research into the nature of mesothelioma—the limited funds available for only a three-year period have also stimulated important research into better palliative care for patients with mesothelioma. Again, that is vital, because the median survival for that disease is only 12 months. Those few who respond to current chemotherapy have only an additional two months—eight weeks—of added median survival. For the vast majority, the reality of modern care is palliation of their disease, so research into appropriate palliation is vital, again supported by those limited funds.

I had some hesitation about the implications of the amendment more broadly but, having listened to the important contributions so far in Committee, it is clear that there is a potential route forward to pass an amendment that would stimulate the national research effort in this area. It would ensure that we are able to provide important funds either through having available in statute but not using—as, we have heard, is the case with the Gambling Act 2005—or having a tool available to apply to members of the compensation scheme. There is an important discussion to be had about how those funds would then be distributed to research-active organisations to ensure appropriate peer review, and that mechanisms from the National Institute for Health Research or one of the research charities could be used to facilitate it.

Without the emphasis in the Bill, it is likely that the early progress being made towards better understanding of the disease and, ultimately, providing treatment for it will be lost. That would be a great shame for the tens of thousands of our fellow citizens who will suffer from that terrible condition.

Lord Pannick: My Lords, I, too, support Amendment 31, for all the reasons powerfully advanced by the noble Lord, Lord Alton of Liverpool, and other noble Lords this afternoon. I should be very surprised if the Minister were to suggest that there is something inappropriate about a statutory levy on an industry to promote a valuable public purpose. It is not only in the Gambling Act 2005, there are other statutory examples that one could refer to. As long ago as 1963, Parliament decided that, under Section 24 of the Betting, Gaming and Lotteries Act, the levy board has a power to charge on all bookmakers involved in horserace betting, the levy to be spent for the purposes of improving the breeds of horses, the

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advancement or encouragement of veterinary science or education and the improvement of horseracing. So there is nothing novel about a statutory levy on a particular industry for a particular valuable purpose.

The noble Lord, Lord Alton, mentioned the Human Rights Act. The Minister has told us today that he cannot comment on whether he has had legal advice, but I would be astonished if his advice were that the Human Rights Act somehow stands in the way of a statutory levy on industry in this context. Parliament has a very broad discretion in the context of property rights, because that is what we are talking about, on the proper balance between individual interests and the public interest. It would be quite fanciful to suggest that there is a legal reason not to support an amendment such as Amendment 31, although I entirely accept that there may well be room for improvement in its drafting.

Lord Empey: Does the noble Lord also recall the statutory ability to charge levies through organisations such as the Construction Industry Training Board, where skills were provided to a number of industries? This used to apply not only to construction but to the textile and a range of other industries. The industrial training boards were a statutory levy on employers in particular sectors.

Lord Pannick: The noble Lord is right. As I mentioned, there are other examples. Parliament imposes levies when it thinks it is appropriate to do so in order to promote a valuable public purpose. There are many examples. I am grateful to the noble Lord.

Lord Howarth of Newport: My Lords, I add my thanks and congratulations to the noble Lord, Lord Alton of Liverpool, on tabling this amendment. He has been a consistent, determined, passionate and highly effective advocate for sufferers of mesothelioma and this is one more instance of his very good work. I was happy to sign the letter that he initiated to the Times but there was no room left for me to add my name to the amendment.

It is profoundly desirable that more funds should be invested in research in this field. It is good that the industry, spurred by the British Lung Foundation, has already contributed £3 million and even better that it has stated its willingness to contribute more, provided that the state provides what the industry would regard as an acceptable contribution, which I guess means more than match funding.

I would be grateful if the Minister or the noble Lord, Lord Alton, could cast some light on why we have not yet seen a greater volume of state-funded research in this field. The Department of Health and the NHS have very large budgets for research; the business department has a substantial budget enabling it to fund the Medical Research Council; and there is no lack of public funding available to be applied in this area.

The normal principle is that those to whom decisions on the use of state-provided funds for research are entrusted look to receive high quality research applications. Surely such high quality research applications must

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have been coming. The noble Lord, Lord Kakkar, spoke, in some sense, on behalf of University College London, where there is an important programme of research in the field of cancer. He also alluded to the Sanger Institute at Cambridge. If we are talking about academic institutions of the highest quality willing to commit themselves to work in this field, it is a puzzle to me why they have not been able to obtain more of the funds that the state provides for research. It may be that not enough appropriate proposals for research have yet been formulated, but I am puzzled about that and I would be grateful if the Minister would cast some light on it.

Perhaps he is going to say that the DWP, which itself has a substantial research budget, will be willing to find additional money to earmark in this direction. However, even the DWP probably insists on quite high quality in its research, so the same constraints might apply. However, those constraints should not be meaningful in this area. We are talking about a subset of the broad field of cancer research. There is an abundant willingness to fund it. I really want to know why it has not happened. Of course, I hope that it will and I hope that this amendment, whether or not it is modified as the Bill proceeds, will be the means to opening up a greater flow of funding towards mesothelioma from the state as well as the industry and perhaps also the charitable sector.

6.30 pm

Baroness Masham of Ilton: My Lords, I, too, put my name to the letter and I, too, support my noble friend’s amendment—at least, the spirit of it. Mesothelioma is an awful condition, as has been so well explained by my noble friend Lord Walton. It needs research. Many more people will be developing this terrible disease. Research is advancing in many ways. One only has to think of stem cells and transplants. One never knows what will happen. However, this condition needs continuing expert research to find a way of alleviating the suffering, as well as a cure to stop this condition developing. I am sure there will be a way to stop it developing. It is there in the body but it needs the experts. Research means hope for these unfortunate people. Surely the Minister can find a way of accepting this amendment.

Lord Avebury: My Lords, I, too, was one of the signatories of the letter that was drafted by the noble Lord, Lord Alton. I join in the congratulations that have been expressed to him on his assiduous work over very many years on behalf of the sufferers of mesothelioma. I am delighted to support him in this amendment, particularly now that the arguments that might have been advanced against a statutory levy have been so comprehensively demolished by none other than the noble Lord, Lord Pannick, and several other noble Lords who have spoken.

If we get this amendment into the Bill, it may not be perfect but, as several of your Lordships have said, it will act as a stimulus to the provision of more funding from a number of different sources, which we may not all have known. The noble Lord, Lord Howarth of Newport, mentioned the DWP. We should look

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beyond the boundaries of the United Kingdom. Surely we are not concerned only with what has been called the national research effort. Mesothelioma is not confined within the boundaries of the United Kingdom. We might also look to the EU’s International Rare Diseases Research Consortium, which has a responsibility for looking at the 6,000 rare diseases that account for a surprisingly high proportion of the deaths and serious morbidity from cancerous diseases. I do not know whether mesothelioma is already on the consortium’s list but, if not, it certainly should be.

I wholeheartedly support the spirit of the amendment of the noble Lord, Lord Alton, and I hope that the department might consider widening the scope of the research that is conducted on the disease by looking to Europe, particularly this rare diseases research consortium.

Lord Empey: My Lords, I hope that the Minister did not think that I was being flippant in my earlier intervention when I said that I hoped we could finish off all the related issues. I understand what the Minister is confronted with. It is a serious business. He has put a lot of work into it and there is no doubt that there is advancement here. With so many people here supporting this amendment and talking in favour of it, he might also feel that it is not necessarily for him alone, in that there are other departmental interests to be taken into account. Perhaps between now and Report he could consult with some of his colleagues, because the contributions that have been made by people who really know what they are talking about have been very impressive.

It is amazing that as a nation we have not taken this issue sufficiently seriously, but at least we have an opportunity to spark a change. The noble Lord, Lord Alton, with his track record on this, has been trying to achieve this for a long time. Perhaps we have a confluence of events here that might actually bring this about. The levy issue is not an issue. It can be dealt with. I am unclear whether this is the right mechanism, or even the right Bill, but there is something here to be achieved and I think it can be done without a huge drain on public resources. I accept that the Minister is trying hard. Perhaps this is not the moment for him to respond to us, but perhaps he will discuss it with his colleagues in the Government.

Lord McKenzie of Luton: My Lords, we support the concept of insurers contributing to fund research to find new treatments for mesothelioma. Indeed, three years ago we were involved in encouraging the industry in what was originally a £3 million commitment over three years. However, we do that principally because of the passionate, compelling and authoritative case that we have heard over the past hour, led by the noble Lord, Lord Alton, and stimulated by the comparison between the stark number that this dreadful disease kills and the funding that has gone to address and ameliorate it. The issue of stimulating a national research effort is hugely important.

Like other noble Lords, I do not know whether this is the appropriate mechanism and I shall be interested to hear the Minister’s comments, but the noble Lord, Lord Alton, seems to have covered all the issues on

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hypothecation, the Human Rights Act and a fee rather than a levy. That is a pretty impressive effort. Like the noble Lord, Lord Wigley, I support a variable approach rather than a fixed amount, but those are points of detail.

Will the Minister share with us his discussions with the Department of Health, which he has referred to before? In particular, have any of his extensive negotiations with the insurance industry about the payment scheme focused on ongoing contributions to research? What is the current attitude of the industry?

Lord Freud: Well, my Lords, I feel like adding my name to the amendment.

I have spent an enormous amount of time on this issue, for exactly the reason that noble Lords have all focused on. Something very odd is happening here when so little money has gone into research in this area. Bluntly, I was pursuing the concept of a one-for-one match, where the insurance industry and the state would come in. I will go into why I have hit a brick wall at every turn on that, which is why it is not in the Bill.

However, rather than being negative, I have talked to everyone but, in particular, tried to understand why we have not had state research on this. I have talked to Dame Sally Davies and the Department of Health, trying to work a way through. There is currently a bit of a chicken-and-egg situation as, before the Medical Research Council will accept research, it has to be of what the council calls “high-quality propositions”. I buy the point made by the noble Lord, Lord Kakkar, on some of the quality research that is now on offer, so there is an opportunity to go forward there. The odd thing is that this is a Bill about the insurance industry and its contribution to that particular levy, when it is actually the insurance industry that has ponied up £3 million of its money and got this research going. What seems odd to me is the way that this is not happening on the other side.

I will now do what I do not want to do, which is to go into why that is so difficult with this Bill and why I have not been able to incorporate something like this. I was going to have a strap on the levy that we could just throw in and match up, but the limitation is that my department is allowed to raise funds only within its own remit, and medical research lies within the auspices of the Department of Health. We do not have the freedom to raise funds for research within a DWP-sponsored Bill. One of the issues with hypothecated research like this is that, from the point of view of the Department of Health, that cuts across its strategy of directing funds at quality research. This is how we have ended up in this odd chicken-and-egg position. I have simply not been able to find a way, in terms of the levy, to get this into the Bill.

So what is to be done? I have discussed this with my noble friend Lord Howe at considerable length. There needs to be a kick-start process to get research going here. We are proposing to get a conference going, which we will jointly host—and I would welcome as much support as possible from noble Lords—to try to get this on the agenda so that it gets the kind of support that it should.

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Lord Pannick: To clarify, is the noble Lord saying that the only impediment to including a provision of this sort in this Bill is that this is a DWP Bill and research is a Department of Health matter? If that is the point, I think it will come as a great surprise to this Committee that it is not possible for two departments to liaise and come up with an agreed position to place within a Bill—not least because, as he will well know, as a matter of constitutional propriety, when a Bill talks about a Secretary of State, it covers all Secretaries of State. There is no division of responsibilities between Secretaries of State. Can the Minister think about whether it is really not possible to talk to his colleagues on these matters?

Lord Freud: I have done quite a lot of work on this, as I have said, and talked to the department. I am saying that this would have to be a Department of Health levy, but the Department of Health is not minded to legislate in this way on this matter because that is not how the structure of research provision in this country works. That is the position. I can get further clarification on this ready for Report.

Baroness Sherlock: The question of whether the Department of Health wishes to do this is a separate matter but, on whether the DWP can do this in its Bill, is the Minister saying that it cannot do it because it is not government policy that the DWP should create a levy that would be to the benefit of something that belongs to DoH, or is he saying that it is illegal for it to do so?

Lord Freud: I am not sure of the definition of illegality, but our powers are such that we cannot raise money for things that are not within our vote. Whether or not that makes it illegal, I am not sure. However, that is the position and we are held to it.

6.45 pm

Baroness Butler-Sloss: I hope that the Minister will forgive me for interrupting him again but is he saying that the department cannot raise money for itself, or that the department cannot approve of a levy that is being taken from the insurers? Is the Bill not broader than the department? Can Parliament not put it into the Bill even if the DWP says that it is not part of its remit? The two points are, first, whether you can support a levy even if you cannot raise the money yourselves, and, secondly, why can the Bill not go forward with it while we discuss whether another government department will be helpful? At the end of the day, if a government department is going to say that it will not help to raise money for mesothelioma, what on earth is the public going to think about the coalition?

Baroness Masham of Ilton: Is it not about time that we changed the policy, if it is policy, because surely now one wants to work together? Health and social care are trying to work together, so why not work together with pensions and health?

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Lord Kakkar: My Lords, the national research effort has been a great success in our country because it is strategic and, as the Minister has said, rightly targets areas to drive excellence and research. However, there are very good examples of collaborative research efforts between industry and Her Majesty’s Government in certain targeted areas to ensure that the volume of funds is available to address specific research questions. Would it not be possible for the Department of Health to consider, as a result of the discussions in this Committee and the passage of this Bill, whether there should be a move towards a strategic research effort in the area of mesothelioma? This could go through the normal processes identified within the Department of Health, the National Institute for Health Research, the Medical Research Council, and the Office for Strategic Coordination of Health Research in the Cabinet Office. Having gone through those normal processes, funds could then be generated through this particular levy. Funds defined and voted on through the national research funds available in the Department of Health could then be combined in a strategic way and focused on institutions that were prepared to make a commitment in this area.

Lord Moonie: Perhaps I may add a small point from my own field in medicine. One of the problems with mesothelioma is that it is diagnosed so late that it is generally considered a hopeless condition. That was certainly the case with friends of mine who died of it some years ago. Gradually things are beginning to look a little brighter. It is important to get treatment early. We know largely who the potential case bodies are likely to comprise—those who have historically been exposed to asbestos—and the numbers should not really be added to at this stage. Therefore it ought to be possible to devise research, either through markers or through surveillance of the case load, to establish diagnosis of mesothelioma earlier and provide more hope to the patients who suffer from it. That might be a fruitful argument for the Minister to make to his colleagues in the Department of Health.

Lord Freud: I take from this a weight of feeling and, bluntly, the best thing that I can do is to take it back in to Government; my department is almost not relevant in this area. In a sense, I do not think that that is the issue. The irony is that those in the insurance industry are the only ones who have been paying anything of any substance in this area. This is, if you like, directed at the wrong area. As the noble Lord, Lord Kakkar, said, why is this not of some strategic importance?

My feedback from the Department of Health and Sally Davies is that they are aware that it is odd that so little is spent on this disease. However, I think that that is where the problem lies and that it is a kind of chicken-and-egg situation. In a way, the insurance industry is in the position of the gambling industry, which has a voluntary scheme and has been spending money voluntarily. It does not need this pressure. What we need to worry about is: how much, as a country, are we spending on this disease?

I hope that noble Lords can hear that I am enormously sympathetic to what lies behind the amendment, and I am not only sympathetic because I have had a hard

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time this afternoon; I have been spending six months of the year running around on this issue, a bit like a mad mouse in a wheel, trying to find a way through.

This debate has been valuable. The next stage is to have a major event—my noble friend Lord Howe and I even have a date in the diary—where we start to do something about this and get something going. That is really what we are looking for, rather than something more mechanistic, such as what is proposed here, which I cannot do.

Lord McKenzie of Luton: I think that we all recognise the Minister’s commitment to this issue. However, has any thought been given to whether this could be channelled through the HSE, which falls within the purview of the DWP?

Lord Freud: To be honest, I do not think that we have looked at that as an option. I will have another look around the wheel to see what there is, but where I have come out is that we need a mainstream effort with the people who are interested in this matter to push it up the agenda of the country. We need to say, “This needs research and it will take a decent share of the budget that is available for cancers in this country”.

Lord Howarth of Newport: When the Minister goes round the wheel again and has conversations with the Minister in the Cabinet Office responsible for the Office for Strategic Coordination of Health Research, and when he meets Professor Dame Sally Davies again, will he try to find out why the money has not been forthcoming so far? Is it political, because the view is taken that there are not terribly many sufferers from mesothelioma as a proportion of the population as a whole and therefore they are not a priority, or is it because this field is unfashionable among academics? We need an explanation because it is very puzzling. Given the existing structures, conventions and procedures, I cannot see any reason why the money should not already have been made available.

Lord Freud: I have actually got round to asking that question already, so I can answer it now. The reason is that it is an unfashionable area because it was believed that there was no hope. We caught it late, it was happening over a very short period and it was fatal. It 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. With regard to breaking that cycle, the insurance industry and the voluntary groups working with the BLF have started rolling the stone down the hill, and I think that we are now in a position to get something moving. However, it is a bigger issue than just getting a little bit of money through this device.

Lord Alton of Liverpool: My Lords, the Minister said that he feels like a mad mouse going round in a wheel. Fortunately, we have some good medics on hand this evening, who, I am sure, will be happy to

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diagnose the problem. Whether they can come up with a cure, I am not sure, but it is the job of parliamentarians to come up with a cure to help Ministers who are clearly committed to the underlying principles enunciated in the amendment to actually achieve them. He said that he has been banging his head against a brick wall and that he has been dismayed by the failure to provide adequate resources to deal with research into mesothelioma. The one thing we can do for a Minister in that situation is to provide him with an amendment to the Bill, which he can then take back to the other departments involved, to the Treasury and to everybody else, saying, “In Committee, they gave me a hard time over this. We need to find some way forward”.

Although I am of course not pressing this to a Division today, the fact that 10 noble Lords participated in this debate and have spoken with such experience and conviction, all being in favour of the principles underlying the amendment, means that surely the Minister now has some ammunition in the locker to take away and use to try and promote this case.

I am indebted to everyone who has spoken in the debate. My noble friend Lord Walton of Detchant said that the amendment could be strengthened and suggested two ways of doing that. I particularly liked what he said about the National Institute for Health Research and the role that it might play. I will certainly consult him in redrafting this amendment between now and Report.

My noble and learned friend Lady Butler-Sloss said that if we could do it for gambling, why on earth can we not do it for this? The noble Lord, Lord Pannick, reminded us, as did the noble Lord, Lord Empey, that many other precedents can be invoked in such circumstances. Perhaps the Minister could ask his officials to look at the whole battery of precedents when going away to persuade those who, somewhere in the system, are clearly opposed to us putting these powers into the Bill.

My noble friend Lord Wigley reminded us of the scale and number of people affected by this horrible disease. He recognised, as did others, that a variable approach might be the right one to adopt as we recast the amendment.

My noble friend Lord Kakkar said there had there had been no strategic approach towards tackling mesothelioma. He is right. He reminded us about the role of the meso-bank, which, as he says, will have global significance. He also referred to the possibilities that genetic research produces, but said that research has to be kick-started. In other words, there has to be some kind of seed funding—in the absence of state funding. Of course, austerity will inevitably be one of the reasons given when the Minister goes back to the Treasury or elsewhere. Other people will have their own priorities and projects, on which they say that the money should be spent. Again, we need to provide the Minister with something that overcomes those objections. The approach adopted in this amendment of a levy is one way of doing that.

 My noble friend Lord Kakkar also reminded us about something that I had not thought about previously: the importance of research into appropriate palliative medicines and palliative care, and the way in which we

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care for people during the last months of their lives. That was an important point for us to consider.

The noble Lord, Lord McKenzie, reminded us of the stark numbers, and the noble Lord, Lord Howarth, who, along with others, signed a letter sent to the Times, told us about the importance of leverage and asked why a greater volume of resources was not made available for research. I was prompted to think about this issue by two Questions asked in another place by a Member of Parliament, Mr Bob Blackman. I was surprised when I saw on one of his Questions just three dotted lines where figures should have been, detailing the resources available for research into mesothelioma. When he tabled a further Question, the column simply showed three sets of zeros. I was absolutely staggered that that could be the case, given that 56,000 British people will die of this disease before it is over.

My noble friend Lady Masham said that research means hope, and she is absolutely right about that. Without research, we can offer no hope.

My noble friend Lord Pannick said that there is nothing novel about this approach and that it would be quite fanciful to suggest that the Human Rights Act could in some way be invoked. If that  Act is invoked it ought to be invoked against the state authorities in this country for not having done something about this problem for so long.

My noble friend Lord Avebury was very generous in his remarks, but in fact I am just an apprentice compared to my noble friend. He and I have been friends for a very long time. He published a pamphlet on the subject of mesothelioma in the 1970s and has campaigned on this issue throughout the whole of his parliamentary life. I stand in awe of him on this and many other matters.

The purpose of my amendment was to start the debate. It has done that. There are moments when Parliament, rather than the Government, can shape policy, and this is one of them. The Minister said that there is a chicken-and-egg cycle. In that case, let us break that cycle. Although I beg leave to withdraw this amendment now, I am sure that noble Lords would expect me to bring it back on Report.

Amendment 10 withdrawn.

Amendment 11 not moved.

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