Mesothelioma Bill [HL]

Lord Pannick Excerpts

Wednesday 5th June 2013 Grand Committee

[Lord Kakkar]

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

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

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

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

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

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

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

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

[Lord Pannick]

My Lords, I, too, support Amendment 31, for all the reasons powerfully advanced by the noble Lord, Lord Alton of Liverpool, and other noble Lords this afternoon. I should be very surprised if the Minister were to suggest that there is something inappropriate about a statutory levy on an industry to promote a valuable public purpose. It is not only in the Gambling Act 2005, there are other statutory examples that one could refer to. As long ago as 1963, Parliament decided that, under Section 24 of the Betting, Gaming and Lotteries Act, the levy board has a power to charge on all bookmakers involved in horserace betting, the levy to be spent for the purposes of improving the breeds of horses, the advancement or encouragement of veterinary science or education and the improvement of horseracing. So there is nothing novel about a statutory levy on a particular industry for a particular valuable purpose.

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

[Lord Empey]

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

[Lord Pannick]

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

[Lord Howarth of Newport]

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

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

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

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

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

--- Later in debate ---

[Lord Pannick]

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

[Lord Freud]

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