Mesothelioma: Research Funding

Lord Borwick Excerpts

Thursday 16th January 2014 Grand Committee

[Lord Borwick (Con)]

My Lords, I declare my interest as a trustee of the British Lung Foundation. Lung diseases are predominantly diseases of the poor because they are often associated with tobacco. Because of this association, there is a strange guilt attached to lung disease, and so the level of research generally into lung diseases is very low.

Asbestos exposure is a subject that is correlated with workmen who dealt with asbestos in the construction or shipbuilding industry at a time when it was regarded as a safe, reliable fire protection. We now know that it is a killer. Like Jimmy Savile, that which was presented by the BBC as safe and cuddly turns out in reality to be a monster. It is very difficult to raise money for lung research because of this guilt complex and, as a result, the BLF has a turnover of about £6 million per annum, which is tiny in comparison with that of the British Heart Foundation. I am afraid that the British Government seem to have been affected by this as much as others. It is only recently that the Government have been working hard to help with fundraising for research into this, and of course they have been doing so against a background of a dreadful recession. It is hard to raise funding at this time.

If we look at breast cancer, a disease that 40 years ago was seen as being just as fatal as mesothelioma is now, the prospects have been transformed by good research and by attracting the best researchers into working on that subject, and the same could be done for lung disease. Normally I believe that the private sector will always be better than the Government at achieving almost anything, and I should pay tribute to the four insurance companies which funded the first three years of the research push. They are Axa, Aviva, Royal Sun Alliance and Zurich—heroes all. However, the insurance industry is beset by the problem of free riders—those who gain the benefit without picking up any of the cost. Notably this has happened in the car insurance industry, and even with modern number plate recognition the cost of uninsured drivers in accidents is an enormous burden on the price of motor insurance. Is that not structurally similar to the cost of insurance companies not contributing to the research fund for mesothelioma?

A general problem for lung disease is the guilt implied by the reaction of so many people. Even if people choose to smoke or do not have the ability to give up an addiction, no such criticism should possibly be made of mesothelioma patients. The sad thing is that Governments in the past have generally not treated the subject of lung disease with the importance or priority that other diseases have achieved. I do not want to criticise past Governments, but I will say that the general level of research into lung disease is much less than into other diseases. Of course, I applaud the work that the Minister has been doing in trying to negotiate more funds. The Government certainly believe that they are enlightened—even the whole source of enlightenment—so can I suggest that lung disease is a cracking good place to prove it?

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[The Parliamentary Under-Secretary of State, Department of Health (Earl Howe) (Con)]

My Lords, I thank the noble Lord, Lord Alton, for having tabled this debate. Mesothelioma is, as we have heard, a terrible and devastating condition. There is no cure and uncertainties remain about the best available approaches to diagnosis, treatment and care. It is therefore completely right and appropriate that mesothelioma research has been discussed a number of times, both here in your Lordships’ House and in the House of Commons.

Funding is, of course, needed for further research to be carried out. The four largest insurance companies have previously made a donation of £3 million between them, and this is supporting valuable research into the disease. A higher level of funding has come from government—through the Medical Research Council and the National Institute for Health Research. Together, these funders spent more than £2.2 million in 2012-13.

The MRC is supporting ongoing research relating to mesothelioma at the MRC Toxicology Unit and is also funding two current fellowships. The NIHR is funding two projects in mesothelioma through its Research for Patient Benefit programme, and its clinical research network is recruiting patients to a total of eight studies, including industry trials. The NIHR funds 14 experimental cancer medicine centres across England with joint funding from Cancer Research UK, and these centres have four studies focused on mesothelioma.

However, as I have said previously, the issue holding back progress into research into mesothelioma is not—as a number of noble Lords have intimated—a lack of funding but the lack of sufficient research applications. I want to clarify and stress that the work currently being funded is of high quality, and that is consequent upon high-quality applications.

Money is available to fund more research, but measures are needed to stimulate an increase in the level of research activity. That is why the Government have committed to doing four things and I am delighted to have this opportunity to report on progress to the noble Lord, Lord Kakkar, in particular, and other noble Lords who have spoken with considerable insight in today’s debate.

First, we promised to set up a partnership to bring together patients, carers and clinicians to identify what the research priorities are. This is now well under way and a formal launch event took place successfully last month. It is supported and guided by the James Lind Alliance, which is a non-profit initiative overseen by the NIHR Evaluation, Trials and Studies Coordinating Centre. The partnership has a steering group of 16 people, comprising six patient/carer representatives and 10 clinical representatives.

The next stage is a survey asking patients, families and healthcare professionals for their unanswered questions about mesothelioma treatment. The partnership will then prioritise the questions that these groups agree are the most important and the end result will be a top-10 list of mesothelioma questions for researchers to answer. The partnership plans to have the list ready by the end of this year, when it will be disseminated, and work will begin with the NIHR to turn the priorities into fundable research questions.

Secondly, the NIHR will highlight to the research community that it wants to encourage research applications in mesothelioma. The launch of this highlight notice will take place in advance of the identification of research questions by the priority-setting partnership to prepare researchers.

Thirdly, the NIHR Research Design Service will be able to help prospective applicants develop competitive research proposals. This service is well established and has 10 regional bases across England. It supports researchers to develop and design high-quality proposals for submission to the NIHR itself and to other national, peer-reviewed funding competitions for applied health or social care research. The service provides expert advice to researchers on all aspects of preparing grant applications in these fields, including advice on research methodology, clinical trials, patient involvement, and ethics and governance.

Finally, we have made a commitment to convene a meeting of leading researchers to discuss and develop new proposals for studies. Initiatives like this are one reason why it is so valuable to have the National Cancer Research Institute, the NCRI, which enables the major funders of cancer research to work in strategic partnership. I can report that NCRI officials held a meeting with clinical research leads yesterday, 15 January, to develop plans for bringing researchers together, and a representative from the British Lung Foundation also participated. The outcome was encouraging: the NCRI will be organising a mesothelioma workshop in the early summer with the aim of encouraging competitive grant applications in the field of mesothelioma. This will cover the full spectrum of basic, translational and clinical research.

Several noble Lords have—not unnaturally—spoken of a need for an ongoing role for the insurance industry in funding mesothelioma research. While the Government have money available to fund high-quality mesothelioma research proposals, we are also encouraging insurers to provide further funding. My honourable friend the Minister for Disabled People, Mike Penning, has met the Association of British Insurers, and following that meeting I have written to the association’s director general, Otto Thoresen. I am pleased to say that he has confirmed in a reply today that a further £250,000 will be paid directly to the British Lung Foundation. He has also confirmed the industry’s commitment to explore with the Government the range of future funding options. We would welcome another opportunity to meet insurers to discuss this.

[Lord Borwick]

I thank the Minister for that news. I also have a copy of the letter. The £250,000 is very useful, but it is less than one single claim from a sufferer of this disease. This has to be a short-term solution. If the voluntary agreement mentioned by the noble Earl does not happen for some reason, will the noble Earl push for legislation to make it happen compulsorily?

[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.