Mesothelioma (Amendment) Bill [HL]

Lord Alton of Liverpool Excerpts

Friday 20th November 2015 Lords Chamber

Moved by

[Lord Alton of Liverpool]

That the Bill be now read a second time.

[Lord Alton of Liverpool (CB)]

My Lords, in moving the Second Reading of this Bill, I first thank all noble Lords who will speak today, others who have been in touch to indicate their support for a measure which enjoys all-party support and, in particular, the noble Lords, Lord Giddens and Lord Wills, who have given a great deal of their time in recent months as we have endeavoured to promote interest in research into a disease which, according to the Government, will claim a further 60,000 British lives over the next three decades. This represents the highest rate of mesothelioma anywhere in the world. I also thank Penny Woods and her team at the British Lung Foundation for their support for the Bill and the Minister the noble Lord, Lord Prior, and his officials for meeting with the noble Lord, Lord Giddens, and myself yesterday. My noble friend Lord Patel is among a number of noble Lords who cannot be here today but who wish to record their support for the Bill.

When your Lordships debated the causes and absence of cures for mesothelioma during the passage of the Mesothelioma Act 2014, my proposal to provide a statutory levy on the insurance industry to fund research was defeated by a slender margin of seven votes—199 to 192. When the same amendment was moved in the Commons, it was defeated by 266 to 226. Several noble Lords and Members of another place agreed entirely with the principle of insurance industry funding for mesothelioma research but expressed a preference for contributions to be secured on a voluntary basis. In both Houses, Ministers gave assurances that a new voluntary research regime would be established. At that time, just four out of 150 insurance companies were voluntary contributors. Far from stepping up to the plate, that number has been reduced to just two. It is to that issue that I return this morning.

Let me begin by saying something about the disease itself. Mesothelioma is an occupationally-related disease. It is an invasive type of lung cancer, primarily caused by prior exposure to asbestos. There is currently no cure. Patients often experience complex, debilitating symptoms and most die within 12 months of diagnosis. Simply put, men and women went to work and were negligently exposed to asbestos when it was known that asbestos caused great harm. As long ago as 1965, the Newhouse and Thompson report provided shocking evidence that a brief exposure to asbestos could result in mesothelioma 50 years after exposure yet scandalously, and with utter contempt for life and health, men and women continued to be exposed to asbestos with little or no protection for decades after that report was made public. Nearly 40,000 British people have died from mesothelioma from past exposures to asbestos and some 60,000 will die from it in the years to come. The UK has the highest incidence of mesothelioma worldwide. Society owes a great debt to those who went to work, often in hard and heavy industries, and built the economy of this country only to suffer terrible consequences.

Our partial and overdue response was the very welcome legislation promoted by the Government in 2014, and we must all continue to insist on proper and commensurate support for those families blighted by the curse of this disease. But surely our most important objective must be to find safe ways of eliminating the danger and to find cures for mesothelioma. Sometimes—and wrongly—it is dismissed as a legacy disease which will simply run its course, claiming about 2,500 lives every year. Despite that, the legacy will be with us in this country for at least 30 years. Neither here nor in other countries is this just a legacy disease. It is quite possible that comparable diseases will emerge from other environmental sources. I repeat that we have the highest rate of the disease in the world. Mortality rates are increasing and have more than quadrupled in the past 30 years. Last year, the Independent newspaper reported that fresh figures from the Health and Safety Executive showed a 10% increase in mesothelioma cases and that the number will continue to rise until at least 2020.

There is another mistaken belief that mesothelioma is a disease confined to the tunnellers, masons and manual workers whose cases I first came in contact with 30 years ago as a young Member of Parliament in Liverpool. This occupational disease affects people from diverse and, as we will learn in the course of this debate, unpredictable backgrounds. Members of your Lordships’ House have loved ones who have died of mesothelioma. One noble Lord described the death of his wife, a Minister described the death of his father and another noble Lord described how his sister died after washing the dungarees of her husband. The former First Sea Lord, the noble Lord, Lord West, who is involved in graduation ceremonies at his university in Southampton today but who supports the Bill, described how many of his cohort at Dartmouth had played snowballs with asbestos and how some had died of mesothelioma in later years. According to the London School of Hygiene & Tropical Medicine, more than 2,500 Royal Navy veterans will die from mesothelioma in the next three decades.

In parenthesis, let me say that the failure of the 2014 Act to include provision for compensation for our servicemen who die of mesothelioma is a glaring anomaly. The British Legion, the Royal Navy & Royal Marines Charity, the Royal Navy Royal Marines Widows’ Association, the Royal Naval Association and others all support calls for change. A 63 year-old civilian could expect to receive around £180,000 in compensation under the 2014 Act, yet one year’s worth of war pension paid the maximum rate for a non-married naval veteran amounts to just £31,000. Veterans should be offered compensation at least equal to that which the courts and the Government have decided that civilians deserve. The unequal treatment of our service men and women amounts to a serious breach of the Armed Forces covenant, which is supposed to ensure that veterans are not disadvantaged because of their service. I hope that the Government will use the Bill to rectify that anomaly, that injustice. When the Prime Minister was recently questioned about our obligations to our servicemen, he promised to look at the issue again. When the Minister replies, will he tell us whether that promise now stands? He knows, because I told him yesterday, that I raised it directly with the noble Earl, Lord Howe, who is now the Minister responsible in the Ministry of Defence. I have not as yet had a reply, and I hope that the Minister will be able to give information on that issue.

That this is not simply a disease of the past is a point underlined by the National Union of Teachers, which states that asbestos remains present in about 86% of schools, leading to an estimated 200 to 300 adult deaths a year. Expert advice given to the House of Commons Select Committee on Education estimates that up to 300 former pupils a year die of the disease following contact with asbestos in schools. Jenny Darby, who is aged 71 and who was a science teacher, has contracted mesothelioma. She says that when the ceiling tiles came off in the classrooms,

“the asbestos would come down. I used to stick them back up almost every day”.

Christine Blower, general secretary of the NUT, says:

“There is still no recognition that asbestos is a serious problem for schools. Shamefully, the Government’s most recent survey of school buildings deliberately excluded asbestos”.

Will the Minister tell us what progress the asbestos in schools steering group has made in identifying the dangers in our schools? What research are we carrying out to identify the dangers in other public buildings such as hospitals—and, indeed, in buildings such as the one where we are meeting today? What advice based on science do we give about disturbing or removing asbestos?

As well as better understanding the causes of mesothelioma, we must do much more to find cures. Apart from preventing great suffering and illness, a breakthrough would remove the need for compensation schemes. It is surely therefore in everyone’s interest to do that. Throughout the debates on the 2014 legislation, I was highly critical of the paltry sums of money which have gone into mesothelioma research. Relatively little is spent on that research in the UK, measured against other cancers of comparable mortality. For example, in 2014 the National Cancer Research Institute figures showed that just £820,000 was invested in mesothelioma research by its partners. That is significantly lower than the £9.9 million and £5.3 million spent respectively on skin cancer—melanoma and myeloma, two cancers with similar mortality. Per death, £3,700 is invested for melanoma, whereas for mesothelioma it is only £480.

Data released by the Department of Health and Department for Business, Innovation and Skills in response to Parliamentary Questions also suggests that statutory investment in mesothelioma research is very low. However, speaking for the Government, the noble Lord, Lord Faulks, said:

“It is absolutely not the case that there is insufficient funding for research. As I have said more than once, the case is that, at the moment, there is not a suitable number of applications for research. The funding is very much there”.

I cannot agree with that, but I can agree with the remark that:

“There needs to be a certainty that the money is there but the top-level researchers also need to be aware of it so that the money and the level of the research capability are brought together”.—[Official Report, 9/12/14; cols. 1711-12.]

There is neither adequate money nor certainty. The noble Lord, Lord Freud, was right when he said:

“My feedback from the Department of Health and Sally Davies”—

Dame Sally Davies, the Chief Medical Officer—

“is that they are aware that it is odd that so little is spent on this disease”.—[Official Report, 5/6/13; GC 252.]

I pursued this inconsistency with the noble Lord, Lord Faulks, and he wrote to me to say:

“In the last five financial years, the MRC and NICR have received just over twenty applications for grants or fellowships that relate to research on mesothelioma. Of these eight applications were successful resulting in an average success rate of 40%”.

Are the Government really saying that the other 60% of those applications had no merit, and how does this square with the assertion that there have been insufficient applications?

My amendment to the Mesothelioma Act would have secured sustainable and fair funding by charging a small levy on insurance firms. During our debate in 2013, my noble friend Lord Kakkar, from whom we will hear later, said that there had been no strategic approach towards tackling mesothelioma. He told the House about the role of MesobanK and its global significance. He referred to the possible breakthroughs that genetic research would produce, but said that such research would need to be kick-started with adequate funding.

Arising from our debate, the Government held talks with the Association of British Insurers to see whether a voluntary funding arrangement could be reached. As I said, there are about 150 insurance companies active in the employers’ liability insurance market, and a small contribution from each could transform mesothelioma research. In January of this year, it was announced that just two of those companies—Aviva and Zurich—would donate a combined £1 million over two years to the BLF’s mesothelioma research programme. This was two fewer companies than had been involved previously. Although I commend Aviva and Zurich, £500,000 a year for just two years does not come close to addressing the multi-million pound funding deficit experienced by mesothelioma research. It does not deliver sustainable funding; it relies on the good will of two companies, which themselves complain that the load is not being fairly shared, and nor does it deliver the promise made to the House when we voted on a statutory provision. It is unfair and unrealistic to ask two firms to be responsible for 100% of the insurance industry’s contribution to mesothelioma research. Any long-term funding solution needs to see this responsibility shared more widely, which is what this Bill ensures.

During the passage of the 2014 Bill, Ministers said that the compensation levy on the insurance industry would be set at 3% of the gross written premium. In fact, what Mr Penning, the Minister in another place, said was:

“Three per cent. is 3% and we have no intention of moving away from it”.—[Official Report, Commons, Mesothelioma Public Bill Committee, 12/12/13; col. 117.]

This time last year I asked—and I ask it again today—why it has been set at 2.2% when that original 3% undertaking was given by the Government? The effect is to short-change mesothelioma sufferers. What is the shortfall from the insurance industry worth? That was a question that I raised yesterday with the Minister. It certainly will not be a small sum of money.

Lastly, what of the research possibilities themselves? The noble Lords, Lord Giddens and Lord Wills, have met with some of the most outstanding researchers in the field, and I am sure that they will describe in greater detail the possibilities that are opening up and the exciting chance to create a global hub-and-spoke national mesothelioma research institute. That was something that we flagged up with the Minister yesterday. The British Lung Foundation has been able to instigate research projects which have opened up extraordinary possibilities. By working with researchers in other areas of therapy, it has gained new expertise and insights. MesobanK, Europe’s first mesothelioma tissue bank, has been created to collect and store biological tissue for use in research, and work is being funded to identify the genetic architecture of the disease.

Dr Peter Campbell, who is conducting research, identifying which genes are the most important targets for mutations in mesothelioma, says:

“Only by understanding its basic biology will we be able to develop a new generation of drugs targeted at the specific abnormalities of mesothelioma cells. This requires sustained investment at all levels of mesothelioma research, from basic genetics and cell biology through drug development to clinical trials”.

He is sequencing the DNA for all 20,000 genes in the human genome from 75 mesothelioma samples and comparing this sequence to normal blood samples from the same patients.

Meanwhile, Dr Elizabeth Sage has done some promising work, too. I met her with the noble Lords, Lord Giddens, Lord Wills, and Lord Saatchi. She told us that she is the only person working anywhere in the world on an innovatory treatment called TRAIL—a drug linked to stem cells, which can lead to the killing off of all mesothelioma cancer cells, which may have application in humans with adult stem cells. She told us that it would take £2.5 million to move from the animal stage, with the mice that she has been working on, to clinical trials. That does not seem an outrageous sum of money when measured against the potential outcomes and saving of some of those 60,000 lives to which I referred.

To take all of this work forward requires sustained funding, and it is simply not true to suggest that there are not first-class researchers and research projects waiting to be funded. We do not have to accept that another 60,000 British people will die of this disease; we do not have to accept the suffering, human misery and hopelessness which accompanies diagnosis. Mesothelioma research funding is currently so low that the temptation is to undertake work on other diseases where funding is secure and sustained. But we can do something about that. It simply is not good enough to rely on ad hoc contributions from insurers, charitable donations and modest government funding. This unreliable approach jeopardises the possibilities of life-saving breakthroughs. The stark numbers of people that this dreadful disease kills and the wholly inadequate funding that has gone to address and ameliorate it speak for themselves. That is why this Bill is needed. I beg to move.

--- Later in debate ---

[Lord Prior of Brampton]

Perhaps I can take that away and come back to the House. I think it will be difficult to come up with precise figures, to be honest, because of the difficulty in allocating some of the more generic research to particular areas. I think that we can encapsulate some of the comments made by the noble Lords, Lord Winston and Lord Wills, and come back to the House with a more thought through, considered figure.

[Lord Alton of Liverpool]

I can see that the Minister wants to move on from the issue of funding, but before he does I should point out that the House has been given figures. It is important to record that in our debate, because they are figures that his predecessor, the noble Earl, Lord Howe, gave the House in reply to a Parliamentary Question tabled by my noble friend Lord Wigley, and referred to by my noble friend Lady Finlay earlier. The figures in the reply to Parliamentary Question HL5852 show that funding from the NIHR on,

“research centres and units, and research training awards on mesothelioma research”,

as the Minister said, in 2006-7 was £0.0 million; in 2007-8 was £0.0 million; in 2008-9 was £0.0 million; in 2009-10 was £0.0 million; in 2010-11 was £0.0 million; in 2011-12 was £0.0 million; in 2012-13 was £0.2 million; and, in 2014, was £0.4 million. Those are the Government’s own figures, which have already been given to Parliament.

[Lord Prior of Brampton]

I think that we are into some definitional issues here, to be honest, from what the noble Lord, Lord Winston, said, and from the figures that I gave earlier, which I am not making up—they are figures that have been given to me. We should come back with some greater clarification and perhaps some closer definition of what the funding figures are.

My impression, although it may be wrong, is that the essential problem is not a lack of funding but a lack of sufficient research applications. Of course, I accept that there is a connection between the two, which I shall perhaps come back to in a minute. The MRC received no mesothelioma applications in 2014-15, and only one in the current year. I want to clarify and stress that the work being funded is of high quality, consequent to high-quality applications. In response to questions raised by the noble Lord, Lord Kakkar, and others, the Government have taken measures to stimulate an increase in the level of research activity. Patients, carers, clinicians, academics and funders have worked in partnership with the James Lind Alliance to identify what the priorities in research should be.

I imagine that some noble Lords will have read the report by the James Lind Alliance, but for those who have not I can say that, following a survey and a workshop, the top 10 mesothelioma research priorities were announced in December 2014, and the NIHR published a final report from the priority-setting partnership in July. In advance of the identification of research questions by this partnership, the NIHR highlighted to the research community that it wanted to encourage research applications in mesothelioma. The NIHR subsequently invited researchers to apply for research funding, in particular to address the research questions identified by the partnership. Eight NIHR programmes participated in this themed call. Fifteen individual applications have been received, of which two have been approved for funding to date, two are under review, and 11 have been rejected. Some noble Lords may think that that is a very high level of rejection, but it is broadly consistent with the overall funding rate for applications to NIHR programmes, which is roughly about one in five.

In addition, the NIHR Research Design Service continues to be able to help prospective applicants to develop competitive research proposals. This service is well-established and has 10 regional bases across England. It supports researchers to develop and design high-quality proposals for submission to NIHR itself and to other national, peer-reviewed funding competitions for applied health or social care research.

The Government are not predisposed to support the Bill, but there is something that we ought to consider—perhaps outside the Chamber. We believe that the existing process for accessing research grants works well; we do not believe that money is the real shortage. It is interesting to note that the Government’s spend on research for medicine is a little over £1 billion—a very significant sum—but the Government are not keen on hypothecated grants for research. However, I have been thinking about this very carefully over the last couple of days, and the noble Lord, Lord Alton, touched on it slightly obliquely at the beginning, but it is an important point.

When the 2014 Bill went through Parliament, it was felt by the Department for Work and Pensions that the highest levy that could be taken from the insurers without forcing them to pass it on through higher premiums into industry was 3%. I understand that there is a shortfall between that 3% and the actual level of claims being made. I wonder whether the 1% that is being asked for in this Bill could be funded through the shortfall within the existing levy. That might be an avenue worth exploring. I say that because at the moment the fact that we are relying on two insurance companies is not equitable. Why should Zurich and Norwich Union cough up £1 million when other employers’ liability insurers are not contributing? This needs further discussion, but I wonder whether there is a way through this and whether we could not use the shortfall in the existing levy.

--- Later in debate ---

[Lord Alton of Liverpool]

My Lords, this has been at times a deeply moving debate, with some very stirring personal stories being told to your Lordships’ House. It has also been thoughtful, amazingly well informed and, as the noble Lord, Lord Hunt of Kings Heath, said earlier, powerful at times in the way that we have addressed this deeply troubling issue. Some of the contributions, such as that of the noble Lord, Lord Winston, have been slightly above my pay grade, but I shall read them afterwards with great interest, as I know will many people, particularly in the asbestos victim support groups, the British Lung Foundation and others who campaign up and down the country on these issues.

I assure the Minister, who has given us what could be a small opening of the door on this question—I will come back to that later—that I brought no knuckle-dusters and I have no knives. Despite the curtain-raiser that the noble Lord, Lord McNally, gave us earlier, the reality is that when he was Minister at the Ministry of Justice he was incredibly helpful on this question when the LASPO legislation was before us. I still bear some of the scars from that period. Yes, I will persist in presenting this, though not just by myself; there are many people, as the noble Lord knows, not the least of whom was the late Member of Parliament, Paul Goggins, who took up this cause so strongly in the other place. As a curtain-raiser to assure the Minister that the issue is not going to go away, I can tell the House that Paul Goggins’s successor in the other place, Mike Kane MP, will be introducing a comparable Bill in the House of Commons in January.

This issue will not go away, and Members of both Houses want progress to be made. It may be that the formula in this particular Bill or the way we have expressed it is not exactly what needs to be done and there may be other ways of doing it, but it is important that something is done about it. That formidable alliance brought a defeat for the Government during the proceedings of LASPO. It was ping-ponged up and down the corridors, and was a very good example of how by concentrating on an issue which had not even been debated at earlier stages in the Commons, your Lordships were able to bring about change. The noble Lord, Lord McNally, said that perhaps the missing tail-piece in the legislation was a commitment to funding. Perhaps, therefore, we are right to keep returning to that issue until something is done about it.

The noble Lord, Lord McKenzie of Luton, was very much the godfather of the compensation arrangements that were introduced in the Mesothelioma Act. He reminded us that we are not seeking research whatever the quality, and that we need to make this a priority area.

The noble Lord, Lord Avebury, has been raising this issue for more than 40 years. I always like to think of him as the inspiration for some of the things I try to do in politics. Being just a chip off his block is sufficient. He reminded us that there has been woefully inadequate funding, no continuity, and only a fraction of the necessary resources.

My noble friend Lady Finlay, one of five medics of a very distinguished nature who have contributed to our debate today, said that this is an epidemic that is looming—not a historic disease—and, as many noble Lords have said, it has worldwide implications. She reminded us of the risks to our children, a point returned to by the Minister in his reply to the debate.

The noble Lord, Lord Winston, told us the story of Herbie, whom he had filmed during his death from mesothelioma, which drew to the public’s attention more about this often unknown and unfamiliar disease. Even the name is difficult for people to get around their tongue, let alone to understand its nature. To shine a light on these things, as we have done in your Lordships’ House today or through the media, is always an important thing to do.

The noble Lord, Lord Kakkar, said that this is a particularly nasty disease which we understand so little about. He reminded us of the crossover between this and so many other diseases and of the importance of personalised, precision medicine. He also reminded us of what happened during the debate on the Mesothelioma Act on the issue of precedent.

I want to say a word about precedent and levies, because the Minister himself touched on this. I refer to the HGV Road User Levy Act, the Gambling Act levy, the fossil fuel levy, the Gas Levy Act 1981, and the levy on the pig industry to eradicate Aujeszky’s disease. Under Section 24 of the Betting, Gaming and Lotteries Act the levy board has a power to place a charge on all bookmakers involved in horserace betting, and Parliament requires a levy to be spent for the purpose of improving the breed of horses. If levies are good enough for dealing with horse breeding or pig disease or indeed in this legislation itself—it is hypothecated legislation and that is the whole point: there is a levy, which the noble Lord referred to, which is to raise money to deal with compensation—we can refer to plenty of precedents if we want to follow this path.

The noble Lord, Lord Ribeiro, reminded us of the story of Steve McQueen, which helped to give this whole issue some public profile, but he also said that it should not just fall to two insurance companies to have to deal with this—a point which has been reiterated throughout the debate. He said that the levy could be the missing piece of the puzzle and that only research can answer the questions in that puzzle.

The noble Lord, Lord Wills, described this as a terrible and remorseless disease and reminded us of the moral duty of the insurance industry, a point returned to by the noble Lord, Lord Howarth, in his contribution. The noble Lord, Lord Wills, said that there is a clear ethical, humanitarian and financial imperative, and talked about the contrast between the £3 million for research and the £68 billion a year paid out by the industry.

The noble Lord, Lord Freyberg, and other noble Lords, have referred to their own personal stories, which I found deeply moving. They were a reminder to us all that this disease is not just confined to those who worked in heavy industries in the past. I felt challenged by what he had to say, particularly about the “toxic and ultimately futile” therapies which are currently available. Surely we can do better than that. The noble Lord, Lord Giddens, told us to raise our game and raise our sights. I am always excited when I talk to the noble Lord about the huge possibilities from supercomputers, from the collection of data and the worldwide networking that we can be involved in. The noble Lord, Lord Cormack, said that I had shown “youthful enthusiasm” in bringing forward this measure.

[Lord McNally]

Only in the Lords—

[Lord Alton of Liverpool]

It is only in the House of Lords that you could possibly be accused of youthful enthusiasm. I think it was Robert Kennedy who said that youth is not a time of life, it is a state of mind, a temper of the will, a quality of the imagination. Your Lordships all have plenty of that, to a very high degree, although the noble Lord, Lord McNally, reminded me that we first met in 1979 as we took the oath. We were both a lot younger then. We have sung in the same choir on many occasions over the years and I was very pleased that we were doing so again.

The noble Lord, Lord Cormack, said that we have a moral duty to future generations. This point was reiterated by the noble Lord, Lord Campbell-Savours, who referred to what happened to his father and the implications for those who continue to work on our ships, in the Merchant Navy or Royal Navy, today. My noble friend Lady Murphy told us about the 2.8 month survival rate and how nothing had improved from the time that her late father died, leaving a widow of 37 years. I will take that story away and remember it. The contrast with dementia research, to which she and the noble Lord, Lord Hunt, referred, is incredibly important.

The noble Lord, Lord Hunt, talked about the case for legislation as a backstop, and I agree that one does not want to resort to it as the first thing. This was the missing tail-piece when we had the chance to legislate, but the only way that parliamentarians can keep issues of this kind before the public, and the Government, is by issuing Bills of this sort. He said that the House is looking for something more. The Minister said that there may be a shortfall within the existing levy and, if so, it might be something we could use towards the research that is so desperately needed. I would be very happy to participate in talks with the noble Lord, and the noble Lord, Lord Freud, and I am sure other noble Lords who have been following this would want to be invited too.

There was argument about the figures. I quote from the British Lung Foundation:

“Contrary to some claims made previously in the House, the quality of research applications has been very high—indeed the number of applications funded by the British Lung Foundation would have been a third higher, had more funding been available. Although previous BLF and insurer research has made some progress and is a cause for celebration, it is frustrating to think how much further along we’d be towards new, effective treatments had mesothelioma research funding been on a par with funding for other cancers. It is sobering to consider how many lives that might already have cost”.

I also asked about the possibility of overestimates, a point referred to by the noble Lord, Lord Winston. On the contribution being made at the moment by the MRC, the BLF says:

“We believe this is a significant overestimate. Figures provided to us by the National Cancer Research Institute … this year state that spending by all NCRI partners—which includes both the NIHR and MRC, as well as other major funders of cancer research—totalled just £820,000 over the same period”.

There is dispute but these figures have been given by the British Lung Foundation, which is at the very centre of these arguments and follows the issues day by day.

I hope the Minister will clarify those questions as we proceed. He has also promised to return to the issues of veterans, which was raised today, and schools. My noble friend Lady Finlay raised the issue of Wales and the noble Lord, Lord Hunt, pressed the Minister further for information about that. We look forward to the correspondence which will precede the debate in another place in January. I know that our colleagues there will read the speeches that have been made today with a great deal of interest. I am deeply indebted to all those who have participated and I ask the House to give the Bill a Second Reading.

Bill read a second time and committed to a Committee of the Whole House.