Mesothelioma (Amendment) Bill [HL] — House of Lords, 2015-11-20
Topic: Health
Ajay Kakkar (Crossbench, Unknown): My Lords, I, too, join noble Lords in thanking and congratulating my noble friend Lord Alton of Liverpool on introducing the Second Reading of his important Private Member’s Bill, and in so doing I declare my own interest as professor of surgery at University College London, an institution with a very active research interest and base in many different cancers There is no doubt, as we have heard in this debate, that mesothelioma represents an important burden of disease for our country—there were some 2,500 deaths from mesothelioma in 2013—but also, going forward, it represents a substantial burden of disease in the years to come, with a predicted 56,000 deaths in the period 2014-2044. We have also heard that mesothelioma represents a particularly nasty form of disease with a very peculiar natural history, potentially seen to develop over many decades in an unpredictable fashion, where there is no therapeutic intervention today that can offer a chance of a cure, where diagnosis is often late, and where palliative care, although advancing, still does not provide patients with any meaningful hope of long-term survival Under these circumstances, it was quite right for my noble friend to have put forward amendments in Committee and on Report, when the Mesothelioma Act 2014 was passing through your Lordships’ House. I was interested in my noble friend’s proposition on that occasion because there is evidence that the research base on mesothelioma is limited. With a disease that we understand so little about, it seemed intuitive that, using the opportunity of mechanisms made available by the Diffuse Mesothelioma Payment Scheme, an additional levy might provide a base for enhanced research funding in this area. This is important because, without such funding, it is impossible for many researchers to make the long-term commitment to create a group and study a disease over many years or decades, to ensure that advances in understanding are made available. The noble Lord, Lord Winston, made important points in this area This is not only a question of research into the specific disease of mesothelioma, but of ensuring that understanding generated in other areas of cancer research, and cell biology more broadly, can be applied to it. There is now an increasing emphasis on understanding that, if we are going to improve outcomes for patients with a variety of different cancers, and other chronic long-term conditions, we need to move away from a generalised approach to managing disease towards personalised, precision medicine: understanding, at a molecular and cellular level, the mutations driving a particular cancer, such as mesothelioma, then developing biological therapies to target them. The problem at the moment is there is an insufficient molecular characterisation of mesothelioma to ensure that this disease can avail itself of all the other advances taking place in research generally On 17 July 2013, when the Mesothelioma Bill was debated on Report, as recorded in col. 786 of vol. 747 of the Official Report, the then Minister, the noble Earl, Lord Howe, answered a number of points. As we have already heard, it was argued then that the correct approach was not to ensure more funding for mesothelioma research but that other mechanisms be used to stimulate more research proposals, which would then be funded if they were of sufficient quality. That seemed a reasonable argument. We have heard the four principal mechanisms that were suggested: first, that the National Institute of Health Research convene a workshop of the principal funding charities, such as Cancer Research UK, the Medical Research Council and others—I understand that that took place in May 2014; secondly, that a highlight notice be published by the National Institute for Health Research, identifying this as a priority area for research—this happened in September 2014; thirdly, that a priority-setting partnership be convened—the James Lind Alliance did this with a variety of stakeholder groups in December 2014. Fourthly, it was suggested that the National Institute for Health Research make its research design service available to help researchers come forward with research studies which were properly designed from a methodological point of view and so would enjoy a greater chance of research funding. What progress has been made in each of those areas; what were the outcomes of those four specific initiatives In that same debate, in 2013, we heard that MRC funding for mesothelioma had increased from £0.8 million in the financial year 2009-10 to some £2.4 million in 2011-12. Has the increase in Medical Research Council support for mesothelioma research continued on that upward trajectory, or has funding fallen back? How many more applications have been received by the funding councils, by the National Institute for Health Research or the research charities, as a result of the four specific initiatives that were offered to your Lordships’ House at the time of that debate? It would be very reassuring if there were evidence that there have been more high-quality applications; that more groups are coming together to study mesothelioma; and that there is greater collaboration between those dedicated groups and other groups working on more fundamental areas of cancer biology, or other tumours that share a similar characteristic and biology to mesothelioma, such as some of the sarcomas. If that has not happened, the assumption that by facilitating this type of conversation we would see more research is not going to deliver the kick-start in activity that we require. It may therefore be important to revisit the question of a specific levy, providing more funding and greater incentive and reassurance for researchers to come together and focus on this area Ultimately, research is about helping patients, and large numbers of our fellow citizens will suffer from mesothelioma in the years to come. If we can provide greater hope that they might have a better quality of life or, indeed, be cured of this disease, through an enhanced research effort, then we should proceed along those lines.