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Brain tumours kill more children and adults under the age of 40 than any other cancer

Research funding based on incidence and turning words to action

by Hugh Adams

With the All-Party Parliamentary Group on Brain Tumours (#APPGBT) meeting next Tuesday we have been busily preparing for that this week and we will be able to share the briefing document prepared for Parliamentarians, and hopefully the meeting minutes, next Friday. Do keep an eye on our Twitter platform from 09:00 – 10:00 on Tuesday for live updates and feel free to like our tweets and do tag in your MP thanking them for attending or asking them to make sure they join for the next one in the Autumn.

Our #StopTheDevastation campaign rolls on with it being shown at Wimbledon and being supported on social media by our supporters new and old – visit our website to find out details about how you can join in. There has been plenty of media interest in the campaign too including an interview on BBC local radio last week where it turned out that the presenter’s father had died following a glioblastoma diagnosis. Although classified as a rare and less common cancer I’m sure everyone reading this will feel that since being in the brain tumour world they have met many others who have, coincidentally, had brain tumours impact on their lives either directly or with friends and family.

It doesn’t feel like a rare cancer to us does it?

Incidence of brain tumours may never match that of say, breast cancer and that has possibly led to the research funding allocation being so skewed. Since national cancer spend records began in 2002, £680 million has been invested in breast cancer, yet only £96 million in brain tumours – that’s a difference of £35 million a year over 17 years. Hardly surprising then that five-year survival for breast cancer is over 70%, yet for brain tumours it is just 12%. It is so important to remember when making a campaigning argument for funding parity, as we do in our Level Up and Stop the Devastation Petition Report, that brain tumours kill more children and adults under the age of 40 than any other cancer. Of course there are the unique social and economic burdens of brain tumours, exposed in the APPGBT’s 2018 report 'Brain Tumours - a cost too much to bear?' ,to consider too. Clearly research funding allocation should not be just about incidence it should take into account expected years of life lost, it should take into account the indiscriminate nature of the disease, – it should take into account the devastation brain tumours cause.

In our asks of Government we have, of course, been wonderfully supported by the Petitions Committee and their continuing interest in our work following the 2016 e-petition that featured the Realf family. Most recently the current chair of the committee Catherine McKinnell wrote to Health Minister Lord Bethell and the points raised in that letter need addressing. The requested deadline for response was 8th July – we haven’t heard anything yet but as soon as we do we will pass the news on because it is bound to trigger further questions. Questions to be asked by Parliamentarians – MPs who are supportive of our cause and our call, MPs who are supportive because our campaigners have contacted them to inform them of the current injustice of the funding for brain tumour research.

In other public affairs news of relevance this week the Medicines and Healthcare products Regulatory Agency (MHRA) has published a Delivery Plan for the years 2021-2023 which you can access here.  

The Plan refreshes its 2018-2023 predecessor, and places emphasis on the MHRA’s drive to adapt to a ‘new era’, with ambitions of ‘putting patients first’, whilst continuing their work as a world-leading regulator. The Plan outlines a two-year roadmap to help build an MHRA fit for the future and underpinned by a ‘robust long-term business model.’ The Plan makes note of the need for new regulatory frameworks to realise the benefits of new technologies, e.g., artificial intelligence and innovative products, whilst ensuring the right levels of safety, quality and efficacy.

The Plan places focus on six strategic goals and 14 underpinning objectives. At the top of the list is

  1. Scientific innovation
    1. Deliver public health impact, world-leading research innovation and a unique proposition
    2. Overhaul the clinical trials system to support innovation and reduce time to approval 

So far so good, and also this week the Government said “The remarkable response of the UK’s world class life sciences sector to COVID-19 will be used as a blueprint to accelerate the delivery of life-changing innovations to patients, as part of the government’s new UK Life Sciences Vision.”

The Vision outlines 7 critical healthcare missions that government, industry, the NHS, academia and medical research charities will work together on at speed to solve.

These missions will focus on preventing, diagnosing, monitoring and treating disease early, using innovative clinical trials to develop breakthrough products and treatments quickly to help save lives, and accelerating the development and adoption of new drugs, diagnostics, medical technology and digital tools.

The mission most relevant to us as brain tumour research campaigners is:

  • Enabling early diagnosis and treatments, including immune therapies such as cancer vaccines

Prime Minister Boris Johnson spoke of a “new way of working to search for life-changing breakthroughs against diseases such as cancer, dementia and obesity, as we have done with COVID” and of setting out “to bottle the formula we have developed to tackle COVID and improve health outcomes for patients across the board in the UK”

Business Secretary Kwasi Kwarteng was quoted too, praising what the life science sector had achieved during the pandemic adding about the aim to “replicate this same scientific excellence and agility to meet today’s greatest health challenges, doing with cancer, dementia and obesity what we did with this virus – gaining the upper hand with brilliant science.”

‘Brilliant science’ needs money. It needs a vision; it needs support and it needs consistency. Scientists need to be able to carry out their research in a secure, sustainable way. That is this vision that underpins our research centre strategy and it could be the model to roll out nationally. We applaud the sentiment of the MHRA Delivery Plan and the UK Life Sciences Vision but we want to turn talk into action. We must deliver for brain tumour patients who do not have the luxury of time. To that end we will keep the pressure on – we have meetings with two new MPs coming up plus an APPG on Tuesday and an inquiry to support. The political will is there but we must make sure that we turn that into deliverables and actual positive outcomes. We will carry on pushing hard, lobbying and campaigning and your support in our endeavours is so very much appreciated.

We are holding Government to account as we seek a pathway to a cure – breaking down the barriers and focusing on solutions rather than problems

That is the way forward, that is the way to #StopTheDevastation

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