Mesothelioma: Research Funding

Lord Alton of Liverpool Excerpts

Thursday 16th January 2014 Grand Committee

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, 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 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”.

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

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.

--- Later in debate ---

[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 is 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.