Motor Neurone Disease (Research)

Steve Baker Excerpts

Monday 12th July 2021 Westminster Hall

[Mr Steve Baker (Wycombe) (Con)]

I am delighted to serve under your chairmanship, Ms Cummins. I am grateful to the petitioners and those who signed this petition. The purpose of the petition is to seek to secure an increase in targeted research funding for motor neurone disease with a new investment of £50 million over five years to kick-start a pioneering motor neurone disease research institute. We do not need to stand here today and wonder how it could be done, because I hold in my hand an excellent proposal from the Motor Neurone Disease Association, My Name’5 Doddie Foundation and MND Scotland for how to make progress on a UK motor neurone disease translational research institute, but of course it needs £50 million over five years, as colleagues have spoken about. I understand that about 185 of my constituents signed the petition, which closed on 6 July. They would like progress, and I would like progress, which is why I am here to speak up for them.

We have heard from colleagues that motor neurone disease is not rare, but it is devastating. It is the most common neurodegenerative disease of mid-life, which is a sobering thought for those of us who have just turned 50. I join the My Name’5 Doddie Foundation in calling on the Government to invest this £50 million. Of course, £50 million is a large sum of money when viewed from the perspective of an individual, but taken over five years and viewed from the perspective of the Government, it seems to me a reasonable sum to invest when progress could be so possible.

I just turn to the charities’ briefing, where they set out the opportunities:

“Despite limited investment, MND is one of the fastest moving sectors in UK health and biomedical research. Current trials hold real promise of a licensed treatment in just 2-3 years for some forms of MND…Counterintuitively, MND, with its relatively low prevalence, is incredibly valuable to research into the more common neurodegenerative diseases such as the dementias. The very rapidity of MND progression makes it easier to pioneer and trial treatments in a realistic time frame.”

It also says that there is increasing interest in MND research from global pharmaceutical companies, and that although the size of the MND market is not insignificant, drug companies also see this as a route to the treatment markets for Parkinson’s and Alzheimer’s disease. That really points to what could be possible if the Government are willing to find this sum of money for a research institute. I implore Ministers to make the case to the Treasury to do that, because this significant cash injection is needed to fund this virtual research institute. I have had a number of exchanges with Ministers in letters and parliamentary questions. I think we need to be clear that the £54 million cited takes within it a broad spectrum of research. What is being asked for is targeted research, specifically on MND. It is about getting this plan done.

It would be reasonable for Ministers to ask what success would look like, and I am happy to say that, on page 15, the proposal sets out what success would look like. I will just make four points. First, the institute would maintain relentless progress and urgency in ensuring a continuous pipeline of treatment candidates, with at least 10 novel drug compounds prioritised into pre-clinical and early-phase human studies by year five. I believe that would count as tremendous progress. Success would also involve: the deployment of an innovative, on-demand clinical trials platform; learning rapidly from each and every trial, successful or not, through newly developed biomarkers; and, crucially, driving nothing short of a total revolution in the consultant-patient discussion, making sure that the offer of a trial of treatment would be the expectation from the very first consultation upon diagnosis, as opposed to the exception, so that it would become part of every patient’s care plan.

Because of the particular characteristics of motor neurone disease, and because of the particular sum involved and the nature of the proposal made by the charities and everybody else involved, I implore the Minister to look carefully at how this proposal can fit into the Government’s plans. I think we are still passing the Bill to establish the Advanced Research and Invention Agency, the research institute. If we are not going to do this with this money—if we are not going to make this kind of progress, this fast, in people’s interests—whatever are we passing that Bill to do? Please, do back this proposal.

--- Later in debate ---

[Helen Whately]

I thank the hon. Member for her point; I will come on to say a bit more about that, and I assure her that I have absolutely heard her argument. However, I am addressing as I go some of the comments and questions raised by hon. Members during the debate, one of which was a request for some examples of research. I have just mentioned one, but there are a couple more that I want to give.

At the NIHR Sheffield Biomedical Research Centre, researchers are trialling the safety and efficacy of a drug called tauroursodeoxycholic acid, or TUDCA, as a treatment for people with ALS. The NIHR is also funding research to enhance support and care for people with MND, with ongoing studies looking at nutrition, diet and therapies to improve psychological health.

Over the past five years, the Government have spent almost £60 million on research into MND and we are currently working on ways to boost this research even further. The hon. Member for Linlithgow and East Falkirk and other colleagues asked about the total figure of nearly £60 million over the five-year period from 2015-16 to 2019-20. That includes research funded by the Government—through both NIHR and UKRI—focused solely on MND; research on MND and frontotemporal dementia, the causes and mechanisms of which have a substantial overlap with MND; research on neurodegenerative conditions that have many commonalities with MND; and spend on research infrastructure within NIHR, supporting MND studies. I hope that that provides some greater clarity on the research spending. In addition, the Government fund research on the structure of the nervous system, cell biology and genetics, and mental processes such as learning and memory. UKRI supports that research with around £30 million of funding per annum.

[Mr Steve Baker]

I am listening to my hon. Friend the Minister with great interest. Of course, following the relative merits of these different programmes is slightly beyond my capabilities in biological science, much as I try. May I invite her to meet the proponents of the research proposal—it compares business as usual, if I may call it that, with the potential results of the proposal —so that she can hear directly from them the advantages that could be gained from it?

[Helen Whately]

I would be delighted to meet the proposers. I was just coming on to talk about a recent roundtable that I hosted, together with the NIHR Sheffield Biomedical Research Centre, which focused specifically on boosting MND research. It brought together researchers, charities, people with MND and funders to consider ways that we could boost research into MND. Government officials are now working with those who attended that roundtable to take things forward, and to encourage and support MND research proposals.

On the particular point about a research institute, applications for funding for research infrastructure, just as for research itself, can and should be made to NIHR or UKRI as appropriate. Bids can win funding through that process, which includes peer review and evaluation. A strong case for this institute has clearly been made in the debate. I am happy to meet my hon. Friend the Member for Wycombe (Mr Baker), and I assure all who are listening that the Government are working with MND charities and researchers on ways we can boost research.

I end by again thanking the petitioners for bringing this issue to the forefront. MND has an enormous impact on individuals and families, and I pay tribute to everyone across the country who is supporting people diagnosed with the condition, and to the incredible and life-changing research that is being undertaken. The Government are committed to working together with the MND community to catalyse further investment and to accelerate progress so that, one day, we will achieve a world free from MND.