Invest in brain cancer and give rights – turn terminal into treatable

Brain cancer is the biggest cancer killer of children and adults under 40, 87% with a high-grade brain tumour diagnosis die within 5 yrs, and yet it gets just 1% of the national spend on cancer.

We call on the government to increase research funding and legally enshrine the right to try: genome sequencing, trials, immunotherapy, repurposed drugs and vaccines. 1. Increase brain cancer funding to speed up discoveries and trials. 2. Funding so every patient can access whole genome sequencing with personalised treatment. 3. Enshrine the Right to Try innovative treatments.

Treatments haven’t changed in decades. Increase funding and give patients a fighting chance.

Between 2018/19 and 2023/24, the Department of Health and Social Care, via the National Institute for Health and Care Research (NIHR) directly invested £11.8 million in research projects and programmes focused on brain tumours. NIHR’s wider investments in research infrastructure are estimated to be £37.5 million, supporting the delivery of 261 brain tumour research studies and enabling over 11,400 people to participate in potentially life-changing brain tumour research.

However, we understand that more needs to be done to boost research into brain tumours. That is why we are working closely with the patient and researcher communities to stimulate high-quality research applications through:

(i) establishing a national Brain Tumour Research Consortium to bring together researchers from different disciplines to drive scientific advancements in how to prevent, detect, manage and treat brain tumours

(ii) a dedicated funding call for research into wraparound care and rehabilitation for people living with brain tumours

(iii) a partnership with the Tessa Jowell Brain Cancer Mission to fund the next generation of researchers through the Allied Health Professionals Brain Tumour Research Fellowship programme.

In terms of access to Whole Genome Sequencing (WGS), in November 2020, the NHS became the first national health system in the world to offer WGS as part of routine care. All paediatric, teenage and adult patients with central nervous system/brain tumours are eligible for WGS as represented in the National Genomic Test Directory, which provides guidance on which patients may benefit from genomic testing, alongside the genomic targets to be tested and appropriate technology that should be used.

Genomic testing in the NHS in England is provided through the NHS Genomic Medicine Service (NHS GMS). As outlined in the 10 Year Health Plan, the NHS GMS will work with industry, academia and other partners to generate evidence and models of adoption for genomic innovations in specific priority areas, such as cancer. This will inform commissioning decisions, accelerate adoption and ensure equity of access to genomic testing across England. Additionally, the NHS GMS will roll out a Unified Genomic Record to integrate patient genomic data with relevant clinical and diagnostic data, shorten genomic testing turnaround times, and work with industry to align testing with clinical trials targets and precision medicine access.

Regarding new and personalised treatments, the government is committed to securing patient access to effective and innovative new medicines, including for brain tumours. There are established routes to support timely access for NHS patients to safe and clinically- and cost-effective new medicines and there are no plans to introduce a new Right to Try initiative for new treatments. The National Institute for Health and Care Excellence (NICE) evaluates all new medicines and makes recommendations for the NHS on whether they should be routinely funded by the NHS. NICE aims wherever possible to issue guidance on new medicines close to the point of licensing and our Life Sciences Sector Plan published in July sets out the measures we are taking to streamline decision making to accelerate patient access to new medicines by three to six months. The NHS in England is required to fund medicines recommended by NICE, and NHS England funds cancer medicines from the point of positive draft NICE guidance, accelerating patient access by around five months on average.

Additionally, the Medicines and Healthcare products Regulatory Agency (MHRA) Early Access to Medicines Scheme (EAMS) is one of the UK’s offerings of Early Access Programmes, where companies have a framework for providing promising treatments in development as unlicensed medicines to patients. The EAMS is designed to give patients with life-threatening or seriously debilitating conditions access to medicinal products that may be used for preventing, diagnosing or treating those conditions, but which are either not yet authorised or not authorised for that use. If there is a medicine in development that incorporates certain diagnostic techniques, they may be eligible for the scheme.

In terms of future publications, the National Cancer Plan, due to be published later this year, will have patients at its heart and will cover the entirety of the cancer pathway, from referral and diagnosis to treatment and aftercare. It will seek to improve every aspect of cancer care, to improve the experience and outcomes for people with cancer. Our goal is to reduce the number of lives lost to cancer over the next ten years, including for brain cancer.

Department of Health and Social Care