Following last week's trip to Epsom Races and appearances on TV, this week has had a real policy feel as we have been making sure we push forward with the plans we have in place to take forward the recommendations in the 'Time To Do Things Differently' manifesto which we launched at Westminster on the 19th March.
In the manifesto we made a direct ask for the Government to declare brain tumours a clinical priority. We are making great efforts to have this addressed not just by the Government but by all political parties ahead of the General Election which will likely be held in 2024. We have strong connections across the main parties and will be lobbying our contacts to make this declaration and, where possible, go a step further and make this declaration part of their manifesto pledges. There are no guarantees but there is a certainty that if you don't ask you don't get and the progress we have made over the years as the leading voice for the brain tumour research community hasn't been made by us being bashful.
We know we need more money invested in brain tumour research and to assess progress in our calls for this increase it is vitally important that we are able to carefully monitor what is actually being spent - it isn't 'real time data' but we need the most contemporary and comprehensive data we can collect. This was once the domain of the National Cancer Research Institute (NCRI) but that organisation is now in the process of being dissolved. We are currently working with partners to fill this data void so we can identify when we are doing well and where we are continuing to fall short and what barriers we still need to overcome.
At our manifesto launch Andrew Stephenson, Minister of State in the Department of Health and Social Care and Professor Lucy Chappell, Chief Executive of the National Institute of Health and Care Research (NIHR) and Chief Scientific Advisor to the Department of Health and Social Care invited Brain Tumour Research to a roundtable on 14th May.
On the agenda is to “discuss collaboration between organisations and with industry and consider how to build research capacity across the country, including by developing an inclusive brain cancer research consortium”. We have also been promised the announcement of a “a new set of Government initiatives to stimulate brain tumour research in adults, children and young people”.
Make no mistake this willingness to discuss, and ambition to move, the cause forward being currently illustrated by Government is due in no small part to the campaigning endeavours, persistence and tenacity of you, our brain tumour research campaigners.
You have amplified our voice and our politicians and civil servant are now almost forced to act.
We will bring you news from the roundtable as soon as we can but rest assured we will be making the points raised in our manifesto very strongly - many attending will have heard them before and they will be hearing them again!
Dame Siobhain McDonagh, quoting Einstein, said when talking about brain tumours: “The definition of insanity is doing the same thing over and over again and expecting different results.” With the regards the unspent money remaining from the £40 million made available in 2018 we must 'do things differently.' Our ask needs to become more specific, more timebound and we are engaging with senior science, tech and health leaders to understand their lived experience, and their learnings and their vision on how together we can realise true change in the funding mechanisms for brain tumour research.
One of the issues that has dogged progress for UK brain tumour patients has been patient and clinician ignorance of available clinical trials. We work hard to develop and maintain good industry and clinical engagement. We are a visible source of patient advocacy so we expect pharmaceutical companies to seek us out to discuss and promote UK trial opportunities.
We are also working with other brain tumour charities on a NG99 taskforce looking to encourage NICE and the NHS to work faster in appraising new therapeutics and technologies and also to expedite faster UK market access to benefit UK brain tumour patients.
Another issue with UK trials has been an industry perception that the UK is costly, and process bound making trials prohibitively slow to start. The pressure coming to bear on MHRA, NICE etc. from us, and other organisations should help change this perception in time.
In this area Consultant neurosurgeon Babar Vaqas (pictured) above has helped us identify the regional and social demographic inequalities when accessing trials and this is a campaigning hot potato which will be something to take to a new Government.
Fifteen years ago, on 28th April 2009, 14 brain tumour charities put their heads together to launch umbrella charity Brain Tumour Research with a mission to raise awareness and increase funding for vital research.
Over the past 15 years, as a direct result of your support, the charity, initially partnering with the University of Portsmouth, has now established a network of dedicated Brain Tumour Research Centres of Excellence, invested millions of pounds into researching brain tumours, and has been instrumental in increasing the annual national spend on brain tumour research from less than £4 million to more than £17 million per year. The charity has worked with thousands of incredible patients, loved ones and communities to raise awareness of this devastating disease, as well as much more.
Our CEO Dan Knowles, pictured with our founding Chief Executive and now Trustee Sue Farrington Smith MBE and the newest member of the Brain Tumour Research team Jake Aroyewun, said: “Looking back at what we have achieved since 2009 is inspiring and everything we have done so far has only been possible because of the dedication and commitment of our supporters. Every person who has supported the charity – by donating, fundraising, volunteering, campaigning, delivering research and more – should feel a huge sense of pride.
“We have come so far, but there is still more to do to achieve our vision of finding a cure for all types of brain tumours. We’re looking forward to sharing our plans with you over the coming months and beyond, and I personally look forward to the next 15 years with excitement and anticipation of what we will achieve together. Our goal is ambitious; there will be challenges ahead, but we know that together we will find a cure.”
Brain Tumour Research has contributed to a new paper which highlights the barriers and opportunities for the brain tumour research sector in the UK to accelerate progress for adult patients across the world.
Dr Karen Noble, our Director of Research, Policy and Innovation, is a named author of the position paper, which reviews the current landscape and identifies three cross-cutting themes and seven research priorities in order to improve outcomes for brain tumour patients.
Dr Noble said: “Despite the funding announcements in 2018, there remain a number of challenges and bottlenecks, spanning basic research to patient experience, that are slowing down our progress to find a cure for all types of brain tumours. The UK continues to have relatively fewer clinical trials compared to other countries and patient survival has not significantly improved in decades.”
Members of the UK National Cancer Research Institute (NCRI) Brain Group investigated the current brain tumour research landscape using information from expert panel sessions, reports published by Cancer Research UK (CRUK), the National Institute for Health and Care Research (NIHR) and the All-Party Parliamentary Group on Brain Tumours (APPGBT).
The resulting paper identified three cross-cutting themes including collaborative networks and initiatives, funding and training; and seven research priorities, encompassing prompter diagnosis, development of accessible, innovative and evidence-based clinical trials, treating every patient as a research patient, and the facilitation of living beyond a brain tumour.
“The recommendations made in this position paper are designed to inspire UK reform and provide focal points for future funding calls and partnerships, to accelerate progress towards better and longer life for adult brain tumour patients across the world.”
At Westminster this week a question from Alistair Strathern (Labour Mid Bedfordshire ) was answered. He asked the Secretary of State for Health and Social Care, "whether NHS England plans to provide dendric cell therapy for glioma".
Health Minister Stephenson Conservative answered that: "The National Institute for Health and Care Excellence (NICE) evaluates all new licensed medicines, including medicines for glioma, to determine whether they represent a clinically and cost-effective use of resources. The NICE aims to publish guidance on new medicines as close as possible to licensing. Any medicine for glioma, recommended in draft NICE guidance, will be eligible for funding through the Cancer Drugs Fund from the point a positive draft guidance is published, in line with the standard arrangements for cancer medicines.
"On 24 April 2024, the NICE published draft guidance recommending a new treatment for glioma in children and young people that will be available to eligible patients once supply of the treatment is available (we reported on this in last week's update).
"There are currently no licensed dendritic cell therapies for glioma. A number of dendritic cell therapies are in development for the treatment of glioma, and any new licensed and NICE recommended treatments would be funded by NHS England, in line with NICE’s recommendations."
A new report published by the Teenage Cancer Trust warns that too many young people aged 13–24 are missing out on the chance to take part in clinical trials, leaving them unable to access innovative new treatments that could increase their chances of survival.
The report, which was developed after a year of consultation with young people the charity supports plus clinicians, academics, charities, and other experts, identifies the main barriers to participation and makes recommendations on how policymakers, the NHS, pharmaceutical industry, and researchers can help overcome these.
In the report, key stakeholders identified a lack of available trials as the key barrier. A lack of open trials impacts patients of all ages, but young people are uniquely disadvantaged because they are more likely to experience rare cancers or find themselves too old to take part in paediatric trials and too young for adult trials.
Other barriers identified include a lack of reliable easily searchable information about current trials for clinicians, and a lack of age-appropriate information for young people to aid their decision making. The report also highlights the need for trial participants to often travel long distances to take part, and the associated expense.
The Teenage Cancer Trust says the unique needs of young people are consistently overlooked in national efforts to increase access to trials – for example last year’s O’Shaughnessy Review on commercial clinical trials – and is calling for their views and experiences to be addressed as recommendations are developed and put into action.
To effectively measure reductions in inequality, the Teenage Cancer Trust is calling for data around the numbers of young people who are offered and participate in trials – and those for whom no trial is available – be consistently collected and transparently available.
Thomas said: “Access to clinical trials is a huge issue for the brain tumour community and we welcome this report from the Teenage Cancer Trust which highlights the barriers facing young people.
“Currently, only 5% of brain tumour patients enter the limited number of trials available, so any route to improvement must be listened to. In our new manifesto, we are calling on the Government to commit to increased participation of adult and paediatric brain tumour patients in clinical trials because equity of access is crucial if we are to find better treatments and, ultimately, a cure.”
This week Thomas attended Cancer52’s Members’ Meeting, which had a special Q&A with Professor Peter Johnson, National Clinical Director for Cancer. Cancer52 represents nearly 100 cancer charities, including Brain Tumour Research, united by their vision of seeing a better future for everyone affected by the rare and less common cancers, which account for more than half of all cancer deaths in the UK.
Professor Johnson said it was his aim to ensure that the NHS is as innovative possible. He spoke about the importance of lowering the barriers to the investigative process of cancers but noted that rare and less common cancers are still a challenge for the system. There are particular problems with brain cancer where the early diagnosis rates are quite low.
In terms of access to treatments, Professor Johnson said that the “NHS does reasonably well to gain access to drugs that have a good evidence base”. He said that the NHS was aware it needed to ensure value for taxpayers' money is maximised and that treatments are deemed effective.
With the news of trial opportunities being missed, barriers for our research sector and the need to get the dendritic cell therapies currently in development actually licensed, then it is clear our manifesto could not be more timely or more needed and that we must, and we will, push on on with our plans to have the commitments realised. Your role as brain tumour campaigner in this is critical now and in the build up to the General Election.
That is it for this week.
Although there has been the policy emphasis this week I am still going horseracing this week - this time at Newmarket. Please keep an eye on our social media to see the fantastic fundraising opportunities presented to us by our partnerships with The Jockey Club and The British Hat Guild - you may decide it is time to invest in that new hat!
Wishing you all a peaceful time until next Friday when we will be back with another campaigning update.
Hugh and Thomas