At Holyrood on Tuesday the Scottish Parliament held the inaugural meeting of the Cross-Party Group (CPG) on Brain Tumours with Brain Tumour Research providing the secretariat to the Group.
The well-attended session was expertly chaired by Deputy Convener Finlay Carson MSP. Those present included, Deputy Convener Colin Smyth MSP, Ben Macpherson MSP, Alexander Stewart MSP and Rachael Hamilton MSP. There were also a good number of charity and patient representatives, as well as experts in the field of brain tumours.
Finlay Carson MSP began by reading a message from the Group’s Convener, Beatrice Wishart MSP, which stated the Group’s aims: “The formation of this CPG is about working together so that improvements can be made in research, diagnosis and treatment for various types of brain tumours that affect too many, predominantly young people.”
In her message to the Group, Ms Wishart emphasised the importance of the CPG: “I spoke recently with a constituent that has been diagnosed with an inoperable brain tumour and told him about the newly formed CPG. He was encouraged to learn about it, and said it gave him hope for the future.”
Next up came an update from the Minister for Public Health and Women’s Health, Jenni Minto MSP, on the work of the Scottish Government in this area. Brain Tumour Research held a face to face meeting with the minister last month and on Tuesday she acknowledged that the survival rates for brain tumours are too low, and that the nature of brain tumours means that it is a less recognisable disease, leading to issues with diagnosis. Ms Minto ended by saying that we need better treatments for patients and that they need to be accessible to all.
Professor Steve Pollard, from the University of Edinburgh, was hopeful that AI, genomics, and immunotherapies could all play an important part in improving outcomes. But his message was clear: “Much more research is needed. Decades of quality research into leukaemia and breast cancer are paying off, and we are seeing improved outcomes. We also need to see the same for brain tumours.”
Mr Carson closed the meeting by stating that the CPG would not be a “talking shop” but needed to “add value” by looking at everyday issues affecting those with lived experience.
The success of this Cross-Party Group on Brain Tumours very much depends on the support it receives from MSPs, industry, the scientific community, charities, and those with lived experience. We look forward to working with the Cross-Party Group to make a visible difference in Scotland.
After the CPG Thomas and Evan met with Paul Sweeney MSP, the Shadow Minister for Mental Health and Veterans. They discussed steps to improving access to clinical trials for young people and enhancing the cancer treatment pathway in Scotland, emphasising collaboration with local health boards.
In the last Parliament, tireless brain tumour campaigner Nicki Hopkins lobbied her MP to support our cause and Holly Mumby Croft ended up as an influential Officer on our APPG. Holly wasn't returned at the General Election so Nicki has been in touch with her successor, Sir Nic Daikin, as you can see in the photo taken in their Scunthorpe constituency last week. Sir Nic has promised us a meeting and we look forward to joining her at a Westminster meeting with him in the near future. To find out why Nicki is a campaigner read her and Did's story here.
Sarah Green, the Lib Dem MP for Chesham and Amersham, isn't an MP we have worked with before but one of our campaigners, a meningioma patient, got in touch with her using the MP letter template on our website and Ms Green reacted by writing to ask the Secretary of State for Health and Social Care, "if he will make an assessment of the potential merits of designating brain tumours as a clinical priority." We look forward to reading the response.
An MP's office got in touch earlier this week on behalf of a constituent who was requesting an update on recommendations made in the APPG on Brain Tumours Inquiry report 'Pathway to a Cure - Breaking Down The Barriers', and "in particular recommendation 6 with reference to paediatric cancer."
We were able to reply that there have been a number of funding developments and although these have been reported on separately in other updates, when collated they are a source of optimism. Whilst we cannot claim this with certainty, as brain tumour campaigners, we feel that the noise we have been making for the past months and years must have some influence in preparing the ground for such a clearly favourable landscape for funding brain tumour research.
There is C-Further ("creating more effective, targeted medicines for children and young people with cancer, bridging the gap between the lab and patients") which was launched in September with an initial investment of £28 million in resource and funding to bring together researchers, clinicians, scientists and industry to provide support, finance and expertise to progress innovations for children and young people’s cancers and launched in the same month was LifeArc’s Childhood Cancer Translation Challenge.
Also just last week it was restated that brain tumours are one of Cancer Research UK’s strategic priorities and this was backed up by an announcement that they are renewing the investment into two Brain Tumour Research Centres of Excellence with a further £8 million over the next five years. One of these centres is the CRUK Children's Brain Tumour Centre of Excellence hosted by The University of Cambridge and The Institute of Cancer Research, London.
Also in recent news, 23 companies will benefit from a share of £12 million from the Innovate UK Cancer Therapeutics programme. The Cancer Therapeutics programme focuses on developing life-changing cancer treatments, including immunotherapies and vaccines. It also supports projects addressing unmet medical needs for treating childhood and young persons’ cancers.
Of the 23 companies, five have a specific brain cancer focus with three of them having a paediatric focus too. One beneficiary is our Centre of Excellence at The Institute of Cancer Research (ICR) have received a £500,000 boost from this funding.
Professor Chris Jones, who leads the team at the ICR, said: “This grant, which we are sharing with biotechnology company Revolver Therapeutics Ltd, will support identifying tiny proteins, known as peptides, that can enter cells to prevent specific cancer-causing proteins from binding to DNA within a child’s brain tumour. This phenomenon is strongly associated with high-grade childhood brain and spinal tumours and it is hoped that by interfering with these DNA-binding proteins, these cancers affecting children can be treated.”
We also contributed to the development of the 2024 – 2029 Great Ormond Street cancer research strategy where numerous mentions are made of their achievements and ambitions in the paediatric brain tumour space.
The strategy notes that “there are disparities in survival rates for different types of cancer in children and young people, with some types showing little or no improvement in survival. For example, with some types of brain tumour, five-year survival rates are as low as 20% “
To combat this there is trial work underway with a new type of CAR-T therapy for children with diffuse midline glioma (DMG) plus children diagnosed with BRAF mutated gliomas, can now be treated with a new targeted treatment in the NHS.
Continuing with research news we are proud to report that scientists at the Brain Tumour Research Centre of Excellence at The University of Plymouth have discovered that targeting a protein called MERTK on the surface of tumour cells could be a new means of addressing meningiomas. They are the most common type of brain tumour in adults, previously only treated with invasive surgery and/or radiotherapy. The results also indicate this approach could prove beneficial in the treatment of schwannoma, another type of nervous system tumour.
During the study – which was part-funded by Animal Free Research UK – our Plymouth scientists discovered that using a drug to block MERTK stopped meningioma and schwannoma tumour cells dividing, and the tumour itself growing.
Dr Sylwia Ammoun, who led the research, said: “There are many drugs being developed to target MERTK, including some going through clinical trials for other cancer types. Thus, this research offers hope to patients with meningioma and schwannoma tumours that a new treatment may be on the horizon. Research presented in this paper was possible due to the hard work and dedication of PhD students, Dr Foram Dave and Kevin Herrera.”
A blood test that can detect the 12 most common and lethal cancers before symptoms develop is to be funded by the Government, in an announcement made this week.
The blood test, known as miONCO, is a form of the PCR test used during the COVID-19 pandemic. It costs £120 and checks for the 12 most common cancers, including the most common high-grade brain tumour, glioblastoma . Researchers say it’s 99% accurate and beats similar tests. Early trials have indicated it detects cancer at any stage and even before symptoms.
Still undergoing tests to assess the approach and whether it has clinical impact on patients, the Government announced it will fund £2.5 million via the National Institute for Health and Care Research (NIHR) to improve the test, making it faster and cheaper. The scientists behind the test have set up start-up company Xgenera to roll it out, saying it has “potential to save millions of lives” globally.
The next stage will see the artificial intelligence, which analyses the test samples and biomarkers, perfected by entering 8,000 blood samples from people of diverse ethnic backgrounds.
Professor Paul Skipp, of Southampton University and recipient of the funding, said: "A test like this could save many lives, catching cancers much earlier. We hope to have an NHS test in five to seven years."
Currently, only four types of cancer have NHS screening tests – breast, bowel, cervical and lung cancer – but involve either a scan or a biopsy.
Dr Karen Noble, our Director of Research, Policy and Innovation, said: “At present, there is no approved screening programme or blood test on the NHS that can detect a brain tumour. The only way to diagnose a brain tumour is through an expensive scan, such as an MRI. This, coupled with the fact that brain tumour symptoms can be fairly non-specific, means many patients have to visit their GP multiple times before getting a referral and subsequent brain tumour diagnosis.
"Therefore, we welcome any development that will help patients get a faster diagnosis of their cancer, avoiding multiple GP trips, and as a result potentially starting their treatment sooner.
"We will be keeping an eye on any developments in the blood test going forward.”
This week's update is a great example of the two-pronged approach Brain Tumour Research takes as we strive for a cure for all types of brain tumours. There is the research we fund (Plymouth, ICR etc.) and the research spend we can influence through campaigning.
Ultimately, of course and always, it comes down to patients and their families, so this week special thanks to those of you who joined us at Holyrood, and to those of you who have made contact with your MPs.
This is what makes the difference and this is what is getting us closer to a cure.
We will be back next Friday.
Wishing you all a peaceful time until then.
Hugh, Thomas & Evan
Published Friday 11th October 2024.