Mesothelioma Bill [HL]

Lord Kakkar Excerpts

Wednesday 5th June 2013 Grand Committee

For the past three years, four leading insurance firms have invested about £1 million a year between them in mesothelioma research, following an agreement brokered by the British Lung Foundation, and we are indebted to the work that it has done. As a result of this, Europe’s first mesothelioma tissue bank has been created in order to collect and store biological tissue from mesothelioma patients, which can be used in research. I understand that research is currently ongoing to identify the genetic architecture of this disease but, as the agreement was only for a three-year period, that funding will soon come to an end. The small number of insurance firms that funded this initial research have indicated, as I understand it, that any long-term funding into treatments and possible cures for this disease should be funded by the industry more widely. They have also argued that a voluntary agreement covering all the firms involved in the employer’s liability insurance market would be unworkable and, as a result, legislative underpinning would be necessary. That is where we started and it is where I conclude. I hope that the Government will act.

[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.

--- Later in debate ---

[Lord Kakkar]

My Lords, the national research effort has been a great success in our country because it is strategic and, as the Minister has said, rightly targets areas to drive excellence and research. However, there are very good examples of collaborative research efforts between industry and Her Majesty’s Government in certain targeted areas to ensure that the volume of funds is available to address specific research questions. Would it not be possible for the Department of Health to consider, as a result of the discussions in this Committee and the passage of this Bill, whether there should be a move towards a strategic research effort in the area of mesothelioma? This could go through the normal processes identified within the Department of Health, the National Institute for Health Research, the Medical Research Council, and the Office for Strategic Coordination of Health Research in the Cabinet Office. Having gone through those normal processes, funds could then be generated through this particular levy. Funds defined and voted on through the national research funds available in the Department of Health could then be combined in a strategic way and focused on institutions that were prepared to make a commitment in this area.

[Lord Moonie]

Perhaps I may add a small point from my own field in medicine. One of the problems with mesothelioma is that it is diagnosed so late that it is generally considered a hopeless condition. That was certainly the case with friends of mine who died of it some years ago. Gradually things are beginning to look a little brighter. It is important to get treatment early. We know largely who the potential case bodies are likely to comprise—those who have historically been exposed to asbestos—and the numbers should not really be added to at this stage. Therefore it ought to be possible to devise research, either through markers or through surveillance of the case load, to establish diagnosis of mesothelioma earlier and provide more hope to the patients who suffer from it. That might be a fruitful argument for the Minister to make to his colleagues in the Department of Health.