Lord Alton of Liverpool to ask Her Majesty’s Government, further to the reply by Lord Faulks on 9 December 2014 (HL Deb, col 1710), what evidence they have for the assertion that a lack of good research proposals is deterring research into mesothelioma and that there are no problems concerning availability of funding. HL3669
†Tuesday 9 December at 2.30pm
†*Lord Alton of Liverpool to ask Her Majesty’s Government, following the decision of the High Court that the consultation on mesothelioma legal fees was unlawful, and the lack of new funding for mesothelioma research, what is their policy with regard to combatting mesothelioma and supporting victims.
Asked by Lord Alton of Liverpool
To ask Her Majesty’s Government, following the decision of the High Court that the consultation on mesothelioma legal fees was unlawful, and the lack of new funding for mesothelioma research, what is their policy with regard to combating mesothelioma and supporting victims.
The Minister of State, Ministry of Justice (Lord Faulks) (Con): The Government take the plight of mesothelioma sufferers seriously and are determined to improve their position. We have introduced significant changes through the diffuse mesothelioma payment scheme, established under the 2014 Act. By October 2014 the scheme had made 131 payments, resulting in £16.5 million being paid to sufferers or their families. The Government fully recognise the need to stimulate an increase in the level of research activity and continue actively to pursue measures to achieve this.
Lord Alton of Liverpool: My Lords, I thank the Minister for that reply. Does he recall that, during the passage of the Mesothelioma Act 2014, Ministers said that the levy on the insurance industry would be set at 3%? They said:
“Three percent. is 3% and we have no intention of moving away from it”.—[Official Report, Commons, Mesothelioma Bill [Lords] Committee, 12/12/13; col. 117.]
Why then has it now been set at 2.2%, representing a shortfall of more than £11 million? That money could have been generated and used to undertake sustainable research into a killer disease which will take the lives of another 60,000 British people. This is according to figures which the Government themselves have issued.
Lord Faulks: As the noble Lord will know, the Government responded to the amendment which he tabled during passage of the Act by saying that they were committed as a priority to helping to encourage research by the National Institute for Health Research. We set up a partnership of patients and carers to identify a top 10 list of questions for researchers to answer. The results were published yesterday, as he may know. We now feel that we have identified the questions and funding will be available if there are appropriate applicants. The problem with research is no longer—indeed, it never was—funding, but finding really conceivably successful applications.
Lord German (LD): My Lords, both the House of Commons Justice Committee and the judgment of the High Court concerning the issue of legal fees in mesothelioma cases are critical of the way that the government review was carried out. It was found to be premature and did not follow the rules of the LASPO Act. We know that the incidence of this disease will peak and then fall away over the years, as the 30 year-old Acts concerning asbestos are put into place and have an effect. Given that there will be a withering on the
9 Dec 2014 : Column 1711
vine of the numbers suffering this fatal disease, is it not now the time for this legal fees issue to be left alone and kept as it is, rather than coming back to it again and putting people through increased risk and increased delay?
Lord Faulks: My noble friend is right. We expect the peak to start declining and perhaps come more or less to an end in 2024. There is to be a review. There is no immediate timing for it but my noble friend is right in that the status quo is acceptable to the claimants. They are to receive damages. Research will continue, as I indicated, and the pre-LASPO regime for legal support will continue. This will ensure that lawyers are paid adequately, and we are told that they will not take cases unless they are paid adequately. The review will go on.
Lord Giddens (Lab): My Lords, I watched a member of my family die of this dreadful disease. There are massive advances in medical technology which make it possible, in principle, to find a cure. As the noble Lord, Lord Alton, has indicated, that could mean saving the lives of some 50,000 people. To do this we are going to need an integrated research strategy, with the Government in the lead, co-ordinating with industries and with universities. Where is this strategy? The Government’s approach seems far too piecemeal and far too limited to do the job that is needed.
Lord Faulks: As I indicated, the strategy is to ensure that the right questions are posed so as to elicit appropriate applications. The funding is very much there, but there is no point in having it unless it is directed towards research which can feasibly produce the result which, I am sure, everybody in this House wants to achieve.
Lord Wigley (PC): My Lords, will the Minister go further on 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. Is the Minister confident that that certainty now exists? What can be done to make sure that the best researchers in the land are aware of it and can get engaged with this problem?
Lord Faulks: I can do no better than quote what Professor Dame Sally Davies, the Chief Medical Officer and chief scientific adviser, said yesterday. She thanked all those who provided information and said:
“With their help I believe we have built a genuine consensus—and a real impetus. I hope the research community will now respond by generating new research proposals that will provide robust evidence to help people with mesothelioma”.
The Lord Bishop of Chester: My Lords, I encourage the Minister to answer the first part of the Question asked by the noble Lord, Lord Alton, about why the percentage of the precept was reduced from the promised 3% to 2.2%.
Lord Faulks: The position with insurers is that they have provided money. I will have to write to both noble Lords and the right reverend Prelate about what has happened to that particular sum. The question of
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the use of research funds is difficult. We think that research funds should be spent in the most effective way, and we think that publicly funding research is much more appropriate than hypothecating against insurers’ particular sums.
Lord McKenzie of Luton (Lab): My Lords, would the Minister accept that throughout our deliberations on the Mesothelioma Bill the focus was on a 3% levy? It was 3% because the insurance industry insisted that beyond that it would have to be passed to consumers. By implication, if the levy is now 2.2%, presumably that falls into the pocket of the insurance companies at a time when compensation is not being paid at a 100% level, and, as has been asserted, there is insufficient funding for research.
Lord Faulks: 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. As to any question of insurers making some profit out of this, I will look into that. It is contrary to what the Government wish to achieve.
Lord Howarth of Newport (Lab): My Lords, when the noble Lord, Lord Freud, brought in the mesothelioma legislation he did so undoubtedly in good faith. Yet, sufferers from this terrible industrial disease have now been failed not only by employers and insurers but by the Government themselves. Has the Lord Chancellor authorised the noble Lord to apologise on behalf of the Government for his decision to take up to 25% of compensation awards for costs—conduct which has been ruled by judicial review in the High Court to be unlawful? The noble Lord still has not explained to the House why the Government have failed to honour their commitment, given in terms by the Minister, Mike Penning, to set the levy on employer’s liability insurance at 3% of gross written premiums, which would have enabled better compensation and more funding for sustained research.
Lord Faulks: Compensation is full at the moment, as the noble Lord knows. I reject the allegation that the Government have done nothing. Not only are they promoting research; they have also, with their Big Tent meeting in June, encouraged much greater co-operation between lawyers acting for claimants to ensure that medical employment records are swiftly obtained. What is most important is that these claimants obtain compensation quickly and at as high a level as they can
Asbestos and the Law Conference 2014
Mesothelioma Research Funding – Professor Lord Alton of Liverpool
Extracts from remarks made by David Alton at a conference organised by the Merseyside Asbestos Victims Support Group, at the Maritime Museum, Albert Dock, Friday October 10th 2014.
Thanks were expressed by David Alton to John Flanagan of the Merseyside Asbestos Victims Support Group and to the British Lung Foundation for their consistent work on behalf of those who are affected by mesothelioma
Mesothelioma is an occupationally-related disease. Simply put, men and women went to work and they were negligently exposed to asbestos when it was known that asbestos caused great harm. In 1965, the Newhouse Thompson report provided shocking evidence that a brief exposure to asbestos could result in mesothelioma fifty five years after first 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 the Report was made public. Nearly 40,000 people have died from mesothelioma from past exposure to asbestos, and some 56,000 will suffer from mesothelioma years to come. The UK has the highest incidence of mesothelioma world-wide. Society owes a great debt to those who went to work, often in hard, heavy industry, and built the economy of this country, only to suffer terrible consequences.
Although we must continue to insist on proper and commensurate support for those families blighted by the curse of this disease – and I have forced votes in Parliament to highlight this – I have also been critical of the lamentable and paltry sums of money which have gone into finding the causes and cures for mesothelioma; and this must be a partnership between Government, the industry, and the research community..
So when, last year, the Government introduced the Mesothelioma Bill in the House of Lords to set up a payment scheme, funded by insurers, for mesothelioma sufferers who could not trace their insurers I determined that something must be done to secure funding for mesothelioma research.
The case for funding
• Over the last several years there has been growing political support for the need for the insurance industry to fund mesothelioma research. The Government’s duty to intervene to make this a reality has been well established.
• Last year’s amendment to the Mesothelioma Bill that if successful would have secured a sustainable and fair future funding system by charging a small levy on insurance firms. Sadly, this was defeated by seven votes.
• As a result of my amendment to the Mesothelioma Bill and the large cross party support it received. The Government agreed to talk to the Association of British Insurers to see whether a voluntary funding agreement could be reached, but no commitments have yet been made. To keep the pressure on Government, I held a short debate in the House of Lords on 16th January. During this debate the Health Minister, Earl Howe, announced that the ABI had written to him committing to provide £250,000 of new funding for the BLF to invest in mesothelioma research, and agreeing to attend talks discuss long term funding options.
• This funding was very welcome; however it is not a long term solution. Continued talks with the ABI and the British Lung Foundation have broken down. This has led me to believe that the only possible way to secure a long term sustainable funding scheme, and to stop the procrastination, is to put the insurance companies’ responsibility on a statutory footing. Sustainability is the key to ensuring effective research work.
• It is estimated that there are 150 insurance firms active in the Employers’ Liability Insurance market, and a small contribution from each could raise a vital £1.5 million each year for mesothelioma research. These small payments would make a huge difference to the future of mesothelioma research in the UK, and could potentially lead to a cure which would save tens of thousands of lives.
• Not only is funding Mesothelioma research the right thing to do for the thousands of people who are set to lose their lives. It makes financial sense for Insurers. If insurers were to fund mesothelioma research they would reduce their liability for compensation and their money would go towards a cure not courtroom challenges.
• Funding in research has produced impressive progress: new researchers from other areas of therapy have started taking an interest in mesothelioma, bringing with them new expertise and insights.
• Recent findings from British Lung Foundation funded research grants have been encouraging. One revealed that attaching a drug called “TRAIL” to stem cells can lead to the killing off of mesothelioma cancer cells. The study was performed, by BLF grant holder Dr Elizabeth Sage, in mice and whilst much work is needed to progress this to human trials with adult stem cells, the results are promising. These are the types of advancements we see when funding is made readily available for mesothelioma and yet it is truly shocking that this is funding we must still fight for.
• Another British Lung Foundation grant holder, Peter Campbell, is conducting research into identifying which genes are the most important targets of mutations in mesothelioma. 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. He hopes that identifying these genes will form the basis of new diagnostic methods, new information for predicting a patient’s outcome and, ultimately, new treatments for this devastating cancer.
• It is Mr Campbell’s belief that “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.”
• Dr Robert Rintoul who works at MesobanK, Europe’s first mesothelioma tissue bank that was created to collect and store biological tissue from mesothelioma patients for use in research; and to identify the genetic architecture of the disease, underlines the importance of research. Not only for the UK which is dramatically affected by this disease but the rest of the world, he says “asbestos is still being used in an unsafe and unregulated way. Although the number of cases of mesothelioma in the UK will fall over the next 30 years, there will be continue to be an epidemic of the disease globally and the lessons that we learn today about the biology of the disease will be used by doctors the world over in years to come”.
And what are we currently doing in the UK?
• A report conducted by the OHE and the Science Policy Research Unit of the University of Sussex found that 7% of all cancer papers produced in 2011 were from the UK, it emphasised the global importance of medical research in the UK. This British commitment to excellence in the field of medical research is something I am deeply proud of and wish to continue to see. However, what was most stark about the findings is that a cut in research by a research funder can cause a disproportionate fall in research activity. It found that a 1% cut in research can see a drop of 1.3% in research productivity.
• I have tabled numerous parliamentary questions on this issue and when I asked about funding for mesothelioma research in 2014-2015 the Health Minister, Earl Howe, told me the number was “not available”. There is no guarantee that funding will be available, this uncertainty is dangerous and why legislation is required.
• Unless we change the way we fund mesothelioma research we risk stagnation and endanger potential life changing breakthroughs. Currently, we rely on inconsistent donations from insurers and charitable donations. This unreliable approach to funding jeopardises ongoing research. This is why we must secure statutory funding for our promising mesothelioma research.
Let me say a word about how we take the campaign forward
• There is not long left of this Parliament for the Government to act. I believe we must do all we can, to put pressure on the Government to bring forward a legislative solution and to commit opposition parties, MPs and individual candidates to commit themselves to supporting funding provision for mesothelioma research.
• I have tabled a Private Members bill in the House of Lords and would welcome the chance for the issue to be discussed again on the floor of the House.
• I know that in the British Lung Foundation has written to all parliamentarians urging them to write to the Minister, and so far over 20 MPs and peers have taken action – including the former head of the British Navy, Admiral Lord West, who has pledged his full support to the campaign. On top of this, an Early Day Motion tabled by Tracey Crouch MP, has over 80 signatures.
• Last month, I was lucky enough to go and visit the British Lung Foundation helpline based here in Liverpool. Whilst there I met many dedicated individuals all committed to supporting people living with lung disease, their families and carers. After talking to the operators and the nurses and hearing about the calls they receive I am even more certain in my conviction that research must continue. The work the British Lung Foundation do in supporting patients is admirable but support is not a cure and a cure can only be found through substantial, innovative and well-funded research.
• To allow this issue to rest or be pushed aside would be another injustice to mesothelioma patients. We didn’t protect them from asbestos in the past and without funding we cannot protect them from this fatal disease in the future. Compassion and mercy motivate us to tackle the pain in the world; but justice challenges us to eradicate its cause.
Let us be clear. We are not asking for the World. Just small sums from the insurance industry would make a huge difference to the future of mesothelioma research in the UK and could potentially lead to cures, saving tens of thousands of lives. There are an estimated 150 insurance firms: a small contribution from each could raise a vital £1.5 million each year for research.
Are levies on industries unheard of? No. Here is a list of just some of them:
The Gambling Act levy
The Betting, Gaming and Lotteries Act levy The HGV Road Users Act levy The Fossil Fuel levy The Gas Levy Act 1981 The levy on the pig industry to eradicate Aujeskey’s disease
There is no reason in principle why an employers’ liability insurance levy should not be supported.
There’s an old saying that the best time to plant a tree is twenty years ago; the second best time is now.
Clearly, it would have been better if, twenty or even forty years ago, significant resources had been put into finding the cause and cures for mesothelioma but the second best time is now – – certainly not twenty or another forty years from now.
The seriousness of the situation was revealed earlier this year when The Independent newspaper reported that fresh figures from the Health and Safety Executive showed a 10% increase in mesothelioma cases, due largely to a greater number of male deaths aged 65 and over. The British Lung Foundation say the numbers will continue to rise until 2020. The newspaper reported the demands of scientists and doctors for more money to be urgently pumped into research.
The playwright, Arthur Miller, in Death of a Salesman, urges us to look at his central character, Willy Loman, and the playwright’s plea is that we pay attention “he’s a human being and a terrible thing is happening to him.” Terrible things happen to those who contract mesothelioma and we should all pay much greater attention to them
Nelson Mandela once said: “Our human compassion binds is the one to the other – not in pity or patronizingly, but as human beings who have learnt how to turn our common suffering into hope for the future.”
Research into mesothelioma represents the only hope for the future for those who contract this lethal disease and so we must urgently commit far greater resources to provide hope to the more than 50,000 of our countrymen who will otherwise die from this harrowing and devastating disease if we fail to act.
1. The need to increase funding for mesothelioma research
Mesothelioma 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.
The UK has the highest rate of the disease in the world. Annual numbers of related deaths are increasing and have quadrupled over the last 30 years. This year it is estimated that 2,500 people will die of the disease in the UK, and during the next 30 years around 60,000 people will die unless new treatments are found.
Relatively little is spent on mesothelioma research in the UK measured against other cancers of comparable mortality. For example, in 2012 (the most recent year for which data is available), the National Cancer Research Institute (NCRI) reported that £1.2m was invested in mesothelioma research by its partners. This is significantly lower than the £9.9m and £5.3m spent respectively on skin cancer/melanoma and myeloma, two cancers that kill a similar number of people each year. For melanoma, £3,700 is invested per death; for mesothelioma it is only £480.
Data released by the Department of Health and Department of Business, Innovation and Skills in response to parliamentary questions also suggests that statutory investment in mesothelioma research is low.
2. Mesothelioma Act 2014
The Government’s Mesothelioma Bill was introduced in the summer of 2013 to set up a scheme ensuring that victims of mesothelioma unable to trace a liable insurance company could claim compensation from a common fund supported by a levy on insurance firms.
During the Bill’s passage, Lord Alton of Liverpool tabled an amendment which would have secured long-term research funding by charging a small additional levy on participating insurance firms. It is estimated that there are 150 insurance firms active in the Employers’ Liability Insurance market, and the amendment had the potential to raise around £1.5 million each year for mesothelioma research. It was narrowly defeated in two votes – one in the Lords and one in the Commons.
The Bill received Royal Assent on 30th January 2014. In response to parliamentary debate during the Bill’s passage, the Government agreed to talk to the Association of British Insurers (ABI) to see whether a voluntary agreement would be possible. A meeting has subsequently taken place, but no firm commitments have resulted. The Government has also committed to raising the profile of mesothelioma research through various means.
Although these commitments are welcome, they do not address the real issue: the need to put funding for mesothelioma research on a sustainable footing in order to guarantee continued progress towards identifying a cure and treatments for this disease.
3. Mesothelioma research funding shortfall
In 2010, the British Lung Foundation and four leading insurance firms reached an agreement under which they collectively granted £1 million a year for three years to invest predominantly in mesothelioma research (a small share was used for asbestos-awareness campaigns). This agreement was facilitated by the Department of Health.
The results have been impressive: research specialists have started taking an interest in the disease, bringing new expertise and insights with them. Europe’s first mesothelioma tissue bank has been created to collect and store biological tissue from mesothelioma patients for use in research, and a trans-Atlantic collaboration to map the genetic architecture of the disease is now being funded – a crucial first step to finding a cure.
This shows that investment in mesothelioma research is worthwhile. However, all the original funding has now been allocated and no solution to provide future sustainable funding has been agreed. Insurance industry leaders have argued that it is unrealistic to ask a small number of firms to be responsible for 100% of the insurance industry’s contribution to mesothelioma research going forward, and that any long-term funding solution needs to see this responsibility shared more widely.
It remains a significant concern that funding will not be forthcoming unless there is legislation to put the industry’s duty to contribute on a statutory footing.
To ask Her Majesty’s Government how many claims for compensation have so far been generated under the terms of the Mesothelioma Act 2014; how that number compares with predicted numbers of claims; what, if any, underspend against budget has resulted; and whether they intend to allocate any underspend for research into finding cures for mesothelioma.[HL2104]
The Parliamentary Under-Secretary of State, Department for Work and Pensions (Lord Freud) (Con): The Scheme began taking applications in April 2014, and began making payments on 1 July 2014. As of 30 September 2014 the Scheme had received 173 applications. During the first year of operation we had forecasted around 900 applications to the Scheme.
The DMPS is funded by a levy on the insurance industry. The levy is intended to cover the cost of the Scheme in any one year, and we are not expecting to generate any under spend. Any under spend would be returned to HM Treasury.