Mesothelioma – E Petition Launched and further debate in both Houses urging greater funding for research to save 50,000 lives – plus letter in The Daily Telegraph


Sign the e-petition:
http://epetitions.direct.gov.uk/petitions/59014

Letter which appeared in The Daily Telegraph (January 16th, 2014)

Cancer research funds

SIR –

Recently, the House of Commons voted against an all-party amendment to introduce a levy on the insurance industry to fund research into mesothelioma, the deadly asbestos-related cancer. This is regrettable and short-sighted. Britain has the highest rates of mesothelioma in the world and, over the next three decades, it is likely to kill over 50,000 people in Britain unless new treatments are found. Yet funding for mesothelioma research still lags shamefully behind that invested in cancers of comparable mortality, such as skin cancer and myeloma.

That the insurance industry help redress this funding shortfall through a modest ongoing contribution is fair, given resultant medical advances are likely to occasion smaller compensation pay-outs for patients exposed to asbestos in the workplace. The industry itself has accepted this, making the failure by insurers and government to yet agree a framework enabling a sustained contribution even more frustrating.

In the current climate, exploring new ways of funding medical research is vital. We hope that today’s Lords’ debate on mesothelioma research funding will prove more productive in negotiating this impasse than previous, thwarted efforts.

Lord Alton of Liverpool (Crossbench)
Lord Avebury (Lib Dem)
Lord Browne of Ladyton (Lab)
Conor Burns MP (Con)
Baroness Butler-Sloss (Crossbench)
Tracey Crouch MP (Con)
Baroness Finlay of Llandaff (Crossbench)
Kate Green MP (Lab)
Lord Monks (Lab)
Lord Walton of Detchant (Crossbench)
Admiral Lord West of Spithead (Lab)
Lord Wigley (Plaid Cymru)
Dr Sarah Wollaston MP (Con)

House of Lords Debate, January 16th, 2014.

Mesothelioma: Research Funding
Question for Short Debate
Baroness Jolly (LD): My Lords, this is a time-limited debate and time is going to be very tight. We have one speaker who has asked to speak in the gap, for a short amount of time, so it is really critical that noble Lords keep their comments to the time given in the list. Thank you.
5 pm
Asked by Lord Alton of Liverpool
To ask Her Majesty’s Government what progress has been made in the funding of research into mesothelioma.

Lord Alton of Liverpool (CB): My Lords, today’s letter in the Daily Telegraph, signed by 13 Members of both Houses drawn from all parties, once again underlines the case for doing far more to find the causes of, and cures for, mesothelioma—a devastating disease which annually claims around 2,200 lives and which is likely to kill more than 50,000 more British people unless new treatments are found.
Let me begin by thanking my fellow signatories and all those taking part in today’s debate. This cause was one about which my good friend, the right honourable Paul Goggins, Labour Member of Parliament for Manchester Wythenshawe, felt deeply. He spoke extensively in Committee on the Mesothelioma Bill. He, and the Conservative Member of Parliament, Tracey Crouch, tabled amendments on Report, based on the amendments narrowly defeated in your Lordships’ House, which would have created a small levy to fund mesothelioma research. Just before the Christmas Recess, he and I once again beat a path to see Ministers to raise the plight of victims of mesothelioma. It was one of the last things that Paul did. After a massive stroke, which robbed him of life, and which robbed Parliament of a good and principled man, Paul was buried earlier today. Our thoughts are with his family. This debate,
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and the continuing fight for justice for victims of mesothelioma, and the need for sustained and adequately funded research, is the best tribute which we can offer him.
During our meeting at the Ministry of Justice with the noble Lord, Lord McNally, we asked about the review required by Section 48 of the Legal Aid, Sentencing and Punishment of Offenders Act 2012 into the effects on mesothelioma claims of its Sections 44 and 46. This brings us full circle, to the House of Lords debate, in which the House rejected the LASPO CFA reforms as sufficient to justify imposing legal costs on mesothelioma sufferers. When I tested the opinion of your Lordships’ House, noble Lords rejected the Government’s proposal that CFA reforms lifting damages for pain and suffering by 10% would compensate for the deduction of 25% of those same damages in success fees.
On 4 December, the Government issued a statement abandoning the consultation reforms in the face of overwhelming opposition from the claimant community, but stated that Sections 44 and 46 would be brought into force for mesothelioma sufferers, stating:
The Government does not believe that the case has been made for mesothelioma cases to continue to be treated differently”.—[Official Report, 4/12/13; col WS 28.]

I refer the Minister to the recent Legal Ombudsman’s report on no-win no-fee agreements, stating that there is evidence of some lawyers failing to make clear the financial risks of conditional fee agreements and trying to pass on the risk to customers. That is precisely the situation your Lordships feared, and would not tolerate dying mesothelioma sufferers facing. That is why, on two occasions, we defeated those proposals and agreement was reached to have a review. However, as Mr Goggins and I made clear to the noble Lord, Lord McNally, there has been no review worthy of the name. The Government have simply restated their original argument.

The crucial point is that any scheme should deliver no less favourable compensation than is presently provided. Victims deserve nothing less. I hope that the Minister will comment on this. During our ministerial meeting, we linked this question to that of research because if cures and causes were identified, such issues would be otiose. In any event, investment in mesothelioma is in its own right desperately needed. The UK has the highest rate of the disease in the world. The annual number of mesothelioma deaths in the UK has nearly quadrupled in the last 30 years.

As I argued during the proceedings on the Mesothelioma Bill, it cannot be in anybody’s interests, not least that of the insurance companies, to pay out vast sums of money in compensation and to generate the full panoply of schemes, reviews, fees, CFAs and litigation, if causes and cures for mesothelioma could be identified. That is why, under the auspices of the British Lung Foundation, to which I pay great tribute, and with the assistance of the Department of Health, a handful of enlightened insurance companies—AXA, Aviva, RSA and Zurich—have been generously funding some of the research. However, as we know, that money has come to an end. A statutory scheme with a

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small levy on all companies would be both fairer and, perhaps more importantly, a sustained source of funds for research.

With this very small level of funding, the results have been impressive. New researchers from other areas of therapy have started to take an interest in mesothelioma, bringing with them new expertise and insights. Europe’s first mesothelioma tissue bank, which I think we will hear more about from the noble Lord, Lord Avebury, has been created to collect and store biological tissue from mesothelioma patients for use in research, and work is being funded to identify the genetic architecture of the disease. The evidence demonstrates beyond doubt that investment in mesothelioma is worth while. However, all the original funding has now been allocated and we look forward to hearing from the Minister what new funding will be forthcoming to continue this work.

A sustainable, reliable voluntary agreement involving all or most of the 150 firms with an active interest in the employers’ liability insurance market would be difficult and impractical. It is for that reason that the Government will ultimately have to intervene in order to make this funding compulsory and fair, so that it is spread across the entire industry. I was particularly concerned to hear a defensive Minister, Mike Penning, say during debate in the House of Commons in his role as Minister of State at the Department for Work and Pensions,
“I cannot break the deal”—
Official Report, Commons, 7/1/14; col. 204.] ,

implying that the deal to get the Mesothelioma Bill through both Houses prevented a statutory levy being secured. Happily, as they say, that is now history and I hope that Ministers will look again at this question. The Conservative Member of Parliament, Dr Sarah Wollaston, who supports the proposal for a statutory levy, has told me that she would particularly like to see scientific research which supports the development of better technologies for preventing exposure and the emerging technology for real-time detection of asbestos fibres, which could significantly reduce the risk of avoidable future cases.

These small sums would make a huge difference to the future of mesothelioma research in the UK and could potentially lead to cures, which would save tens of thousands of lives. It is estimated that 150 insurance firms are active in the market and that a small contribution from each could raise a vital £1.5 million each year for research.

I now want to say something about the alleged lack of quality of research applications. On several occasions, the Government have suggested that the lack of research is due to the poor quality of research proposals and not the funding available. Happily, this misconception has now been thoroughly debated in the other place and Ministers have conceded that that is not the case. During the debates in the Commons, Paul Goggins referred to the work of Stephen Holgate, MRC Clinical Professor of Immunopharmacology at Southampton University and chair of the British Lung Foundation’s scientific committee. Stephen Holgate says:

“It is simply not true to state the quality of mesothelioma research applications is not up to standard”.

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From what he called the “very meagre starting point” of existing funding, he says that the work already undertaken,

“has been of an exceptionally high standard”.

Therefore, the practical and moral case for the industry having a duty to fund mesothelioma research, and the Government’s responsibility to ensure that it does, is abundantly clear. However, it is also clear that, even if some funding were to be made available through the voluntary route, it alone would not address the core issue at stake here, which is sustainability. Therefore, while welcome, sponsorship of specific projects in isolation will not be an appropriate way forward. It is incumbent on us to find one that is.

With the opportunity having passed for putting sustainable future funding for research in the Bill, I hope that the Minister will today give a concrete guarantee for a long-term, sustainable research programme. Such a scheme could be achieved either though securing long-term investment from the insurance industry via a voluntary scheme or by introducing, as I hope we ultimately will, a statutory measure making contributions from that industry to fund mesothelioma research compulsory. However, we also need a commitment today that the Government will make this happen, a date by which the Government will ensure that a scheme is in place and an assurance that such a scheme will be of the value of at least £1 million every year.

Mr John Edwards, consultant thoracic surgeon at Sheffield’s Department of Cardiothoracic Surgery, sums up the arguments in the following way: first, that government, industry and insurers do not want to fund the immense costs of treatment, benefits and litigation for mesothelioma; secondly, that patients and their families would much rather have their lives back than any benefits or compensation; thirdly, that researchers have plenty of ideas but not enough funding; and, fourthly, that current treatments may have benefits in palliation of symptoms and a modest increase in life expectancy but do not cure the disease. In other words, there would be huge benefits to the health of the nation if the insurance industry were to invest likewise in research.

Mr Alan McKenna, an academic who teaches law at the University of Kent, has seen several members of his family contract asbestos-related diseases. Last week, he launched an e-petition to the Government calling for more research into mesothelioma.http://epetitions.direct.gov.uk/petitions/59014

In the House, a Private Member’s Bill will shortly be introduced.

Ultimately today’s debate is about saving lives. I read last week of a journalist who was in her 50s and who, like her nine year-old daughter who had died a year earlier of mesothelioma, had succumbed to the same fatal disease. We are all aware, too, that there have been fatalities among family members of several senior colleagues in both Houses; just before today’s debate, the noble Lord, Lord West, told me that 10 of his contemporaries at Dartmouth have died of mesothelioma. These may be added to the thousands of men and women who contracted this killer disease simply by going to their place of work.

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5.10 pm
Lord Borwick (Con): My Lords, I declare my interest as a trustee of the British Lung Foundation. Lung diseases are predominantly diseases of the poor because they are often associated with tobacco. Because of this association, there is a strange guilt attached to lung disease, and so the level of research generally into lung diseases is very low.
Asbestos exposure is a subject that is correlated with workmen who dealt with asbestos in the construction or shipbuilding industry at a time when it was regarded as a safe, reliable fire protection. We now know that it is a killer. Like Jimmy Savile, that which was presented by the BBC as safe and cuddly turns out in reality to be a monster. It is very difficult to raise money for lung research because of this guilt complex and, as a result, the BLF has a turnover of about £6 million per annum, which is tiny in comparison with that of the British Heart Foundation. I am afraid that the British Government seem to have been affected by this as much as others. It is only recently that the Government have been working hard to help with fundraising for research into this, and of course they have been doing so against a background of a dreadful recession. It is hard to raise funding at this time.
If we look at breast cancer, a disease that 40 years ago was seen as being just as fatal as mesothelioma is now, the prospects have been transformed by good research and by attracting the best researchers into working on that subject, and the same could be done for lung disease. Normally I believe that the private sector will always be better than the Government at achieving almost anything, and I should pay tribute to the four insurance companies which funded the first three years of the research push. They are Axa, Aviva, Royal Sun Alliance and Zurich—heroes all. However, the insurance industry is beset by the problem of free riders—those who gain the benefit without picking up any of the cost. Notably this has happened in the car insurance industry, and even with modern number plate recognition the cost of uninsured drivers in accidents is an enormous burden on the price of motor insurance. Is that not structurally similar to the cost of insurance companies not contributing to the research fund for mesothelioma?
A general problem for lung disease is the guilt implied by the reaction of so many people. Even if people choose to smoke or do not have the ability to give up an addiction, no such criticism should possibly be made of mesothelioma patients. The sad thing is that Governments in the past have generally not treated the subject of lung disease with the importance or priority that other diseases have achieved. I do not want to criticise past Governments, but I will say that the general level of research into lung disease is much less than into other diseases. Of course, I applaud the work that the Minister has been doing in trying to negotiate more funds. The Government certainly believe that they are enlightened—even the whole source of enlightenment—so can I suggest that lung disease is a cracking good place to prove it?
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5.13 pm
Lord Wills (Lab): My Lords, I congratulate the noble Lord, Lord Alton, on securing this debate and on his persistence in pursuing this issue. I associate myself with his remarks about Paul Goggins, who was such a good—in every sense of that word—colleague in the other place and indeed in government.
In supporting what the noble Lord, Lord Alton, has said, I want to make two simple points in the short time allocated. In doing so, I recognise the commitment of the Minister and his ministerial colleague, the noble Lord, Lord Freud, to making progress on this issue. Indeed, I congratulate the Government on the significant progress made more generally in the Mesothelioma Bill; it is a significant advance on where we were just a few years ago.
My first point is that the need to place funding for research on an adequate and sustainable basis should be incontestable, as we have heard over and again in your Lordships’ House and in the other place, and we have heard it again here today. This is a dreadful disease that inflicts terrible suffering on thousands of people and into which research is significantly underfunded in comparison with other cancers.
My second point is that the Government need to act more vigorously to ensure that funding for research is put on an adequate and sustainable basis. There is no good reason for them not to do so. If the problem remains the quality of research proposed, as the noble Earl has suggested in the past—and, as he is well aware, that is disputed, as we have heard again today—then the Government need to do whatever is necessary to raise the quality of those proposals. I suggest that the single most important action they could take is to increase the sums of money available for research. It is hard to see how that would not work.
If Ministers are tempted into further inaction by arguments about the problems of hypothecation, they should not be: those arguments are misplaced. As we heard from the noble Lord, Lord Kerr, in the debate last year, that pass was sold when funding was first accepted in universities and other research institutions from non-governmental sources. I am not aware that accepting such funding has resulted in any dilution of the quality of research.
If the problem is shortage of funds—although the noble Earl has insisted in the past that it is not—then that, too, needs to be addressed. As the noble Lord, Lord Alton, has pointed out, the Minister in the other place has said that to ask the insurance industry to pony up more funding would disrupt the exhaustively negotiated agreement which was the basis of the Mesothelioma Bill. Is that really the case? Quite apart from the continuing moral responsibility of the insurance industry as a whole—leaving aside the notable exceptions that we have already heard about—the sum of money to significantly improve the research effort on a sustainable basis is a tiny fraction of the overall amounts involved and an even tinier fraction of the sums that insurers should have paid to sufferers over the years but have evaded doing so. For example, £3 million a year would double the amount currently donated by the private and voluntary sectors. Do the Government seriously think that a levy producing £3 million a year would so
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distress the insurance industry, which pays out £187 million a day to its customers—more than £68 billion a year—that the industry would walk out of the agreement or think that its fundamentals were disrupted in any way?
I ask the Minister to look ahead 10 years and ask himself how it will look to historians if the Government do not find a way around all the objections, no doubt spelled out in his brief today, to making real and quick progress on this matter so that they can agree the reasonable requests that have been made in the other place, and indeed here, by all who have spoken on this issue in the past year or so. How will it look if the Government fail to engineer the relatively small sums of money needed and so condemn thousands to avoidable pain and suffering? I am afraid that the longer the Government delay in finding a solution, the harsher will be the judgment of history.
5.17 pm
Lord Avebury (LD): My Lords, the noble Lord, Lord Alton, has reminded us of the assertion by the noble Earl, Lord Howe, that progress on mesothelioma research was being held up not by the lack of available funding but by the absence of high-quality research applications. That has been refuted by a number of experts, notably Professor John Edwards, one of the foremost experts on this disease, who says that he and his colleagues have,
“identified that we could spend about £10 million instantly”.
Will the Government now acknowledge that there would be high-quality applications if researchers knew that a definite source of funding was available?
In 2012, £1.2 million was spent on mesothelioma research by the National Cancer Research Institute’s partners, so the loss of the net £880,000 available from the insurers represents a fall in total expenditure of no less than 43%. The British Lung Foundation says that the new community of researchers that it supported had,
“the potential to make real breakthroughs … of the kind we’ve seen in other types of cancer in recent years”,
but this is now under threat as the money has run out. As the noble Lord, Lord Alton, said, if a cure were found for this horrible disease, the enormous future costs of treatment, benefits and litigation arising from mesothelioma would be saved, benefiting not only the patients and their families but also the NHS, the DWP and the insurers. For this, we need ongoing work such as the research by the Sanger Institute, with two American groups, to identify the role that genes play in this disease. This could be the first stage in finding a cure, through chimeric antigen receptor cell engineering, a process in which T-cells are taken from the patient and genetically modified so that they link on to receptor proteins on the cancer cells and destroy them. This has already been used successfully to treat patients with acute lymphocytic leukaemia at the Children’s Hospital of Philadelphia, which says that this is,
“another important milestone in demonstrating the potential of this treatment for patients who truly have no other therapeutic options”.
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So there is a glimmer of hope for mesothelioma sufferers here, if only the research funding were available.
We understand that a new agreement would be needed for the industry to extend the funding that some companies have provided over the past three years, or better still to increase it in line with the fall of the value of money. If the Government then provided matched funding, as the Minister in another place indicated was being discussed between the DWP, the DH and the ABI, we could be looking at £2.4 million a year between 2014 and 2017. The Minister said the ABI had “gone to the industry” and would come back to him and the noble Earl, Lord Howe, with its answer and that that process continues. However, the ABI tells me that Ministers said plainly that they were not prepared to look at co-funding between the Government and the industry.
If joint funding could be agreed in principle, there would be an overwhelming case for all employers’ liability insurers to come forward with half the money. The total over the coming three years would match the amount spent in a single year on cancers with similar death rates, such as myeloma and melanoma.
As it is, we leave this debate without any solid assurance on the future of the research spend on a disease which is extremely painful and always fatal. We, too, have not been able to respond to the urgent need for research to deal with the consequences of previous Governments’ failure to act on the known risks of asbestos use, but this Government have not heard the last of the matter.
5.21 pm
Lord Kakkar (CB): My Lords, I join in congratulating the noble Lord, Lord Alton of Liverpool, on having secured this important debate, and in so doing declare my own interest as professor of surgery at University College London. Responding to discussion on Report on 17 July last year, the noble Earl, Lord Howe, made a number of important points with regard to the opportunity to build capacity in the research base available to address the important problem of mesothelioma. I would like to explore first with him what progress has been made in the four specific areas that he kindly mentioned during that debate.
The first was the opportunity for the National Institute for Health Research to seek the assistance of the James Lind Alliance to determine priorities with regard to mesothelioma research, bringing together not only the research community but patients and other stakeholders. Secondly, there was a commitment that the National Institute for Health Research would be in a position to issue a highlight notice to the research community identifying that the institute—in consultation, I assume, with the Office for Strategic Co-ordination of Health Research—had identified mesothelioma as a key national priority research topic, thereby activating not only research groups with a specific ongoing interest in mesothelioma but those with peripheral interests that could be brought to bear to address the question of mesothelioma research. I wonder whether that notice has been issued and, if not, when it is planned that it would be.
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Thirdly, there was the offer that the National Institute for Health Research would make its research design service available to the research community, specifically to start identifying designs of clinical studies that could be undertaken to help to advance our understanding of mesothelioma research. Lastly, there was a commitment to bring together interested parties in research funding, particularly Cancer Research UK and the Medical Research Council, to have a conference of experts and those parties interested in mesothelioma research to determine how a national co-operative effort could be taken forward. I wonder whether any of those undertakings have indeed happened or in what timeframe it is planned that they might be discharged.
It is clear that the situation in which mesothelioma research finds itself is nothing new. At many times, and for many other diseases, there has been recognition that a new strategic research focus needs to be developed at national level. I would argue that with the National Institute for Health Research now well established and in place in the NHS in England, we are uniquely positioned to take forward a strategic approach, not only to building research capacity but in ensuring collaboration across those groups devoted at the moment to mesothelioma research and other groups who have technologies and interests—we have heard peripheral examples of the management of acute myeloid leukaemia—so that they are brought together with some strategic focus and direction. I wonder whether the Minister is able to provide your Lordships with an understanding of what point those discussions have reached.
In addition, we now have across the NHS in England well established academic health science networks, 15 of which cover the entire country. I declare my interest as chairman elect of University College London Partners. I wonder whether opportunities might be brought to bear for promoting research and collaboration between academic institutions, the NHS and industry, which are at the core of the purpose of the academic health science networks. Those 15 networks would then be asked to see how they might contribute, through their participant organisations, in a national research effort to promote further understanding and a more accelerated research programme on mesothelioma.
5.26 pm
The Lord Bishop of Newcastle: My Lords, I, too, am very grateful to the noble Lord, Lord Alton, for initiating this short debate. I speak to support him and to encourage the Government to enable the establishment of a mesothelioma research funding scheme as urgently as possible. Research into this form of cancer is very much the Cinderella of cancer research in the UK, and there is an urgent need for us to do more and to do better.
I knew very little about mesothelioma until I became aware of its effects, not least through the early death in 2009 of the former Bishop of Peterborough, who some Members may recall. The knowledge that the cause of this cancer has been working away unknown and undetected in one’s body for 20 years or more suggests to me that much more research into detection and treatment is absolutely vital.
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It is reckoned that this year over 2,000 people will die of the disease in the United Kingdom. We have the highest rate of the disease in the world, and a similar rate to those dying of myeloma and melanoma. However, the problem is that the funding for mesothelioma research lags far, far behind; it is only about one-tenth, from the figures that I have seen. If it is true that every single week an average of 20 tradespeople in the UK die from diseases such as this which are linked to exposure to asbestos during their working lives, then that is a tragedy.
I know that the Minister is sympathetic to the needs of all those who suffer from this terrible disease, and that he is sympathetic to the need for more research. If I may, I urge him to be really proactive in his work with his colleagues, academics, the NHS and the insurance industry to establish a sustainable research funding scheme. It is self-evident to me that more and sustainable funding will attract greater quality research to an area that has been neglected and underresourced for so long.
5.28 pm
Lord Giddens (Lab): My Lords, let me add to the chorus of praise for the noble Lord, Lord Alton, not only for initiating this debate but for all his extraordinary work around this issue. In the debate on the Bill in the Commons, it was said quite frequently that research into mesothelioma has a Cinderella status in terms of research funding. It is worth asking why that is so. It may reflect some generic issues, but I think that there are some specific ones.
The best way to consider this is not to be too parochial about it but to look around the world. When one does this, as I did in my admittedly amateur way, one finds exactly the same pattern in the European countries, in the United States, in Canada and in Australia. That suggests that we are dealing with a deeply structural problem, which has some specific features connected to this disease. Thus, for example, in the United States, according to the figures that I have, the National Cancer Institute until recently invested only 0.01% of its annual budget in research into mesothelioma. That suggests that there might be a powerful cluster of reasons that is producing this marginality in research terms. There are four of them, which I will briefly describe.
First, because of industry resistance—we all know the long history of that—most attention has been focused on reparation and legal wrangles. In so far as the disease is known at all to the wider public, it is mainly due to that history rather than to its own characteristics. Secondly, by its very nature it affects mainly working people, who do not have the political clout of the more affluent. Thirdly, in industrial societies, although not on a global level, it can be seen as an illness that will fade away naturally because asbestos is no longer used in industry and most of it has been disposed of, so it could be said to have a kind of natural life cycle. Fourthly, because of those things, the alleviation of suffering is often seen as important rather than the creation of research in a direct and systematic way into the disease that produces that suffering.
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If noble Lords will forgive me for being academic and didactic about this, there are three policy implications of what I have described, which I would like the Minister to ponder and perhaps respond to. First, if we are to get more money spent on research—and there will be a need for public backing for that—the Government should consider spending more on a public awareness campaign about mesothelioma to ensure that it is understood as a structural disease in its own right and that it is disentangled from the legal histories that have so dominated its past. That has happened with lung cancer and smoking; the same thing should happen with mesothelioma.
Secondly, I feel strongly that the objective research should not be just to control symptoms but to search for a cure, as the noble Lord, Lord Avebury, mentioned. I checked some of the treatments in the United States and the debates about them; as I say, I am an amateur in respect of those treatments, but they seem pretty promising. Some new treatments have been admitted to the FDA’s fast-track programme in the US, including gene therapy, which was mentioned, immunotherapy and so on. We should look for a cure for this illness.
Thirdly, the most powerful reason for supporting research is not just that many thousands of people are still affected by mesothelioma and will die from it. As we know, thousands of people will do so, but there are even more powerful reasons than that to support research. A prime reason is that we need research into pathologies of environmental origin. We should remember that only 40 years ago or so asbestos was thought of as the miracle substance. We live in a world in which we ingest, breathe in and are in contact with thousands of substances that have never existed before. It takes about 40 years for mesothelioma to come out; a variety of other consequential diseases might be stored up there. There is therefore a great public interest in this, which stretches well beyond mesothelioma itself. I would appreciate a response from the Minister to those three questions.
5.34 pm
Lord Wigley (PC): My Lords, I am grateful to my noble friend Lord Alton for securing this debate. I pay tribute to him for his perseverance with this most distressing of subjects. We seem to be fighting a battle of attrition, one step backwards regularly following what we had thought to be two steps forward.
The importance of not letting up in our fight for mesothelioma sufferers came home to me last month, when the Christmas card from my closest school friend, Peter Wolfe, told me that he had been diagnosed with the condition, despite never having worked in any industry that could have triggered the disease.
We have been reminded of the estimated 50,000 people who may die over the next 30 years unless adequate treatments are found, and I suspect that this could be an underestimate. In Wales, cases of mesothelioma have risen sharply over the past 20 years. Whereas 23 cases were reported in 1990, by 2008 that number had jumped to 90, and according to Cancer Research UK, the latest estimate is about 109 new cases annually. That is partly because of Wales’s industrial legacy.
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However, there are dangers for younger generations too. Some 85% of schools in Wales contain asbestos, compared to some 75% of schools across the UK. Almost 400,000 children and young people in Wales are exposed to the risks of this deadly material. The Cwmcarn High School is a case in point: it was forced to close in October 2012 after a survey found that pupils and staff were at risk from airborne particles of amosite asbestos. Responsibility for the management of asbestos in schools rests with the Welsh Government, but that of research rests primarily in the hands of the UK Government. As has been said, investment in such research is woefully inadequate. According to the National Cancer Research Institute, £400,000 was invested in mesothelioma research by its partners in 2011, compared with £5 million for myeloma and £5.5million on melanoma—two cancers with similar fatality rates.
The agreement in place over the past three years with the four leading insurance companies, generating £1 million a year for research, cannot be funded in the longer term. We tried but failed to get provision for a statutory levy during the passage of the Mesothelioma Bill. That could have raised £1.5 million a year for research.
As has also been mentioned, a similar amendment was tabled in the Commons by the late Paul Goggins, aimed at ensuring that research funding in this area would be permanent and effective. As he said in Committee:
“The problem, as the industry itself says, is not that some companies are not prepared to fund this; it is that not all of them are prepared to do so … we must have a formula and a system that means that everybody contributes according to their market share”.—[Official Report, Commons, Mesothelioma Bill Committee, 10/12/13; col. 15.]
As a result of his remarks, the Minister, Mike Penning MP, agreed to talk to the ABI about setting up such a broader agreement. I understand that a meeting has taken place, although nothing concrete has yet come out of it. Perhaps the Minister could clarify that in due course.
I associate myself with the tributes paid to Paul Goggins. It was poignant that Tracey Crouch MP had to move the amendments tabled in his name on Report shortly before he died. That amendment was defeated by 266 votes to 226. Responding to that debate, the Minister claimed that the additional research levy would nullify the deal reached by the Government, because the industry claims that a voluntary agreement with all 150 firms would be unmanageable. Is the industry to be granted a veto in this most vital area of research? The Government really must find a solution. If they cannot establish such a voluntary scheme, they must find other means of providing statutory funding. The more time that we waste in deferring this decision, the greater the number who will die.
It is not only people in the UK who are at risk. I conclude with Paul Goggins’s words in Committee in the Commons:
“We have the dreadful problem of mesothelioma in this country, and people will die from that dreadful disease, but we know that, because of the export and use of asbestos in the developing world—the so-called BRIC countries—the issues that we face now are issues that other countries will face in future. If we can
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advance the science and understanding of mesothelioma now, that might do great good not only in this country, but throughout the world”.—[
Official Report
, Commons, Mesothelioma Bill Committee, 10/12/13; cols. 9-10.]
I hope that the Government will listen.
5.38 pm
Baroness Finlay of Llandaff (CB): My Lords, 60% of patients diagnosed with mesothelioma are dead within a year. In Wales alone, care costs about £2 million per annum.
I want to focus on three essential areas of mesothelioma research that need funding. First, the long latency period between asbestos exposure and tumour development can be up to 50 years, so what triggers the disease? Secondly, is there a genetic element? Evidence suggests that some families are particularly at risk but the specific predisposing gene has yet to be identified, suggesting epigenetic factors. Thirdly, is there a tumour marker such as CD90, as recent research has suggested, for early mesothelioma diagnosis?
The Welsh Assembly’s Asbestos (Recovery of Medical Costs) Bill in November 2013 proposed to secure funding for NHS Wales to treat asbestos-related diseases and recognised the importance of research. Moreover, the British Lung Foundation, using funds from four leading insurance firms, has sponsored research at Cardiff University to develop a new laboratory model. Earlier diagnosis by markers may provide a treatment window. The Government can lever actions through the issues identified by the noble Lord, Lord Kakkar, and others. This debate is a tribute to Paul Goggins, elegantly led by the noble Lord, Lord Alton of Liverpool.
5.40 pm
Baroness Wheeler (Lab): My Lords, I also commend the noble Lord, Lord Alton, for securing this debate and for ensuring that we keep the focus on the Government’s pledge on a package of measures to stimulate and build high-quality research into mesothelioma. There is optimism that progress is slowly being made but we are a long way from getting the secure and guaranteed funding on the scale we all want to see and which we recognise is vitally needed to offer hope to mesothelioma sufferers and to find a cure.
Noble Lords, and supporters of the Bill across all parties in the other place during last week’s Third Reading, have stressed our moral obligation on this issue in this country and internationally, as my noble friend Lord Giddens has underlined today. I also pay tribute to the vital contribution and role of Paul Goggins. I did not know him personally but certainly was fully aware of his work and reputation in my party, and of the respect in which he was held across Parliament. Now that the Bill has passed, I also pay tribute to the work of the British Lung Foundation and the campaigners, trade unions, MPs and Peers who have been lobbying for many years for justice for victims of this terrible disease. The BLF carer support project, in conjunction with Carers UK, is also developing vital support networks for carers and their families. It deserves special mention and recognition.
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The Government have agreed that the scheme regulations will provide for a review of the operation and effectiveness of the scheme in four years’ time, which we welcome. On research funding, we must ensure that considerable progress has been made by then. The noble Lord, Lord Kakkar, again has ably underlined the need for a strategic, defined national initiative on mesothelioma research. I look forward to hearing from the Minister what actions have being taken on this. How will the current initiatives his department and the DWP are rightly pursuing be developed and built into a coherent strategy which will lead to real progress being made?
There is no doubt that the mesothelioma research programmes funded by the BLF itself, as well as jointly with the four insurance companies, and by other charities, have played an important role in kick-starting research and academic interest and laying the foundations for future developments. The meso-bank which is collecting tissue and blood samples from sufferers will provide the opportunity for fundamental and translational research. There are important projects too on palliative care and pain relief. I notice on the BLF website that it has recently awarded a further tranche of grants which will help to improve understanding of how the disease develops and progresses, and how our genes contribute to the disease.
We strongly supported the amendment in the name of the noble Lord, Lord Alton, for the 1% levy on the insurance companies, which would have provided secured and guaranteed research funding, and could have led to major advances and breakthroughs. It was sad to see this amendment again defeated in the Commons last week. As our shadow Minister, Kate Green, said, the levy,
“is very modest in the context of the overall scheme … a very modest sum for a multibillion pound insurance industry to afford, but a sum that could make an exponential difference to the scale of research that is possible into the disease”.—[
Official Report
, Commons, 7/1/14; col. 201.]
As we have heard, the DWP Minister of State, Mike Penning, cited the quality of research issue—on which there are clearly differing views among medical and research experts—but also rejected the amendment on the basis that it would “break the deal” with the insurance industry on the whole compensation scheme. It will be interesting to get further insight from the Minister today on why the insurance industry saw this issue in this way. I, too, look forward to the update on the ABI discussions that was promised by the Minister.
We know that the terrible reach of mesothelioma extends across all occupations and is not just an industrial disease. Indeed, it is anticipated that in the coming years more people will be diagnosed from all occupational backgrounds who have come into contact with asbestos or who contracted it via secondary exposure, such as wives who washed their partners’ overalls.
I was particularly concerned to learn of the huge problem of asbestos in schools, to which the noble Lord, Lord Wigley, referred. The risk or impact is not just on teachers but on children and ancillary and office workers. More than 70% of schools still contain significant amounts of asbestos. I am sure the Minister will agree that this frightening situation underlines the
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importance of making real and substantial progress on mesothelioma research, not just into treatment and cure but also into how the workplace can be protected.
Like other noble Lords, I look forward to hearing from the Minister what progress is being made on the joint DWP and Department of Health initiatives, and on the Government’s plans and timescales for developing the full-scale strategy for mesothelioma research that is so desperately needed.
5.44 pm
The Parliamentary Under-Secretary of State, Department of Health (Earl Howe) (Con): My Lords, I thank the noble Lord, Lord Alton, for having tabled this debate. Mesothelioma is, as we have heard, a terrible and devastating condition. There is no cure and uncertainties remain about the best available approaches to diagnosis, treatment and care. It is therefore completely right and appropriate that mesothelioma research has been discussed a number of times, both here in your Lordships’ House and in the House of Commons.
Funding is, of course, needed for further research to be carried out. The four largest insurance companies have previously made a donation of £3 million between them, and this is supporting valuable research into the disease. A higher level of funding has come from government—through the Medical Research Council and the National Institute for Health Research. Together, these funders spent more than £2.2 million in 2012-13.
The MRC is supporting ongoing research relating to mesothelioma at the MRC Toxicology Unit and is also funding two current fellowships. The NIHR is funding two projects in mesothelioma through its Research for Patient Benefit programme, and its clinical research network is recruiting patients to a total of eight studies, including industry trials. The NIHR funds 14 experimental cancer medicine centres across England with joint funding from Cancer Research UK, and these centres have four studies focused on mesothelioma.
However, as I have said previously, the issue holding back progress into research into mesothelioma is not—as a number of noble Lords have intimated—a lack of funding but the lack of sufficient research applications. I want to clarify and stress that the work currently being funded is of high quality, and that is consequent upon high-quality applications.
Money is available to fund more research, but measures are needed to stimulate an increase in the level of research activity. That is why the Government have committed to doing four things and I am delighted to have this opportunity to report on progress to the noble Lord, Lord Kakkar, in particular, and other noble Lords who have spoken with considerable insight in today’s debate.
First, we promised to set up a partnership to bring together patients, carers and clinicians to identify what the research priorities are. This is now well under way and a formal launch event took place successfully last month. It is supported and guided by the James Lind Alliance, which is a non-profit initiative overseen by the NIHR Evaluation, Trials and Studies Coordinating Centre. The partnership has a steering group of 16 people, comprising six patient/carer representatives and 10 clinical representatives.
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The next stage is a survey asking patients, families and healthcare professionals for their unanswered questions about mesothelioma treatment. The partnership will then prioritise the questions that these groups agree are the most important and the end result will be a top-10 list of mesothelioma questions for researchers to answer. The partnership plans to have the list ready by the end of this year, when it will be disseminated, and work will begin with the NIHR to turn the priorities into fundable research questions.
Secondly, the NIHR will highlight to the research community that it wants to encourage research applications in mesothelioma. The launch of this highlight notice will take place in advance of the identification of research questions by the priority-setting partnership to prepare researchers.
Thirdly, the NIHR Research Design Service will be able to help prospective applicants develop competitive research proposals. This service is well established and has 10 regional bases across England. It supports researchers to develop and design high-quality proposals for submission to the NIHR itself and to other national, peer-reviewed funding competitions for applied health or social care research. The service provides expert advice to researchers on all aspects of preparing grant applications in these fields, including advice on research methodology, clinical trials, patient involvement, and ethics and governance.
Finally, we have made a commitment to convene a meeting of leading researchers to discuss and develop new proposals for studies. Initiatives like this are one reason why it is so valuable to have the National Cancer Research Institute, the NCRI, which enables the major funders of cancer research to work in strategic partnership. I can report that NCRI officials held a meeting with clinical research leads yesterday, 15 January, to develop plans for bringing researchers together, and a representative from the British Lung Foundation also participated. The outcome was encouraging: the NCRI will be organising a mesothelioma workshop in the early summer with the aim of encouraging competitive grant applications in the field of mesothelioma. This will cover the full spectrum of basic, translational and clinical research.
Several noble Lords have—not unnaturally—spoken of a need for an ongoing role for the insurance industry in funding mesothelioma research. While the Government have money available to fund high-quality mesothelioma research proposals, we are also encouraging insurers to provide further funding. My honourable friend the Minister for Disabled People, Mike Penning, has met the Association of British Insurers, and following that meeting I have written to the association’s director general, Otto Thoresen. I am pleased to say that he has confirmed in a reply today that a further £250,000 will be paid directly to the British Lung Foundation. He has also confirmed the industry’s commitment to explore with the Government the range of future funding options. We would welcome another opportunity to meet insurers to discuss this.
Lord Borwick: I thank the Minister for that news. I also have a copy of the letter. The £250,000 is very useful, but it is less than one single claim from a
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sufferer of this disease. This has to be a short-term solution. If the voluntary agreement mentioned by the noble Earl does not happen for some reason, will the noble Earl push for legislation to make it happen compulsorily?
Earl Howe: My Lords, I note my noble friend’s question. My best answer to him at this stage is “one step at a time”. However, I can assure him that we will use our best endeavours to see a successful outcome from our discussions with the insurance industry. It is perhaps premature for me to go further at this stage.
Lord Alton of Liverpool: My Lords, I am grateful to the Minister, and I promise not to interrupt again, but can he provide further clarity about this £250,000? Is it drawn only from the four companies that have been referred to? How many of the 150 companies are contributing to it? What does it represent in terms of what is currently available from the industry?
Earl Howe: My Lords, as this a time-limited debate, perhaps the noble Lord would accept my undertaking to write to him with those details. I am not sure, in fact, that I have them, because the letter, although extremely welcome, is quite brief in the detail it gives on the source of the funding.
Lord Wills: I am very grateful to the noble Earl for giving way. I shall be brief. Will he write within the next three months to everyone who has spoken today reporting on the progress of the conversations with the ABI about the range of options he has just referred to?
Earl Howe: I would be happy to do that.
Both the Government and the industry recognise the potential for insurers individually to sponsor specific research infrastructure or projects in mesothelioma, which would provide an excellent way for the industry to remain engaged following the earlier donation. I am pleased to report that the Department of Health is convening a high-level meeting with the association and the British Lung Foundation to explore practical ways to take that forward.
The noble Lord, Lord Alton, spoke powerfully about the need for sustainable funding in this area. I re-emphasise the point that I made a minute ago: research funding is available for good-quality research and what we lack are research applications. What we need, in our view, is to get innovative research ideas that will make a real difference, and that is what the NCRI meeting will hopefully do. The research ideas put forward by the noble Baroness, Lady Finlay, in her intervention are of course very pertinent. She speaks with great authority in this area. They are all questions that the NCRI discussions can address. That meeting will be an opportunity to take a strategic approach, and it requires getting the right people together. The NCRI event will involve researchers from within the mesothelioma community, and from a wider field, and research funders.
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It is worth noting that spend on lung cancer research by the NCRI member organisations, including the main public funders of cancer research, has more than quadrupled over the past decade. It has increased from £3.5 million in 2002 to £14.8 million in 2012. That is because of the quality of research proposals that have come forward and the interest shown by the research community.
In conclusion, the Government are strongly committed to ensuring progress is made in research into how best
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to diagnose and treat this dreadful disease, and care for those affected. A number of very powerful points have been made in this debate. I will pick up those that I have not been able to cover and will write to noble Lords. I have outlined the steps that we are taking, and I hope that noble Lords are assured that these measures will deliver what they, and indeed we in the Government, are seeking.
Committee adjourned at 5.56 pm.