We are very pleased to announce that the date for our next campaigning webinar is Tuesday 3rd December from 6:30pm-7:30pm. It will be held on the Zoom platform and we are delighted that we will be joined by Will Quince (pictured above with our CEO Dan Knowles at the launch of our manifesto in March this year).
Until standing down at the last General Election Will had been MP for Colchester since 2015. He was also Minister of State for Health and Secondary Care from September 2022 to November 2023. It was during his time as a Minister that we engaged with him, and he spent time answering questions from MPs on topics such as Government spend on research into brain tumours and he also met with us on a number of occasions. To have him join us for the webinar presents a real opportunity to hear from someone with recent lived experience on how best to campaign effectively, what gets the best cut through and how he might consider the best way for us to take our campaigning agenda forward.
If you would like to join the webinar on the 3rd December please let us know and email us at campaigning@braintumourresearch.org
Also, following a planning meeting this week with our Chair, Dame Siobhain McDonagh (pictured above with Hugh), we can announce the date and time of the next meeting of the APPG on Brain Tumours.
The meeting will offer a packed agenda, including an update from the NIHR on the deployment of money allocated for research into brain tumours and the Brain Tumour Research Consortium, plus news of a surgical implant aimed to stop tumour recurrence.
It will be held at Westminster on Tuesday 26th November from 5:00pm and once again we are requesting that you contact your MP and ask them to join us at that meeting.
The more MPs involved, the more we amplify our voice for change.
Please could you all send the following (or a personalised version of the following) as a ‘Save the Date’ email to your MPs this weekend?
Remember to Cc me (hugh@braintumourresearch.org).
Subject: APPG on Brain Tumours 26th November 5:00pm-6:00pm Room Q PCH
Dear <Your MP’s name>
The APPG on Brain Tumours will be taking place in Room Q of Portcullis House on Tuesday 26th November from 5:00pm-6:00pm and will be chaired by Dame Siobhain McDonagh MP. An agenda and a briefing document from the charity Brain Tumour Research, who provide the APPG’s secretariat, will be forthcoming in due course and Hugh from the Charity is Cc’d.
As your constituent, and as someone who is passionate about improving options and outcomes for brain tumour patients, I am asking if you could please make space in your diary and join that meeting.
It would be hugely appreciated.
…..
<Your Name>
<Your postal address and postcode>
One MP we know will be joining the meeting on the 26th is Scott Arthur (pictured with Hugh and Thomas earlier this week). Scott was chosen by ballot to submit a Private Members' Bill and he has decided this Bill's focus will be providing pharmaceutical companies with incentives to develop treatments for rare cancers.
As he posted at the time of it's submission:
"Recent years have seen sufficient advances in the treatment of cancer. Where rare cancers are concerned, however, progress has not always kept pace. For example, the treatment of glioblastoma brain tumours has not changed for decades (Temozolomide – discovered in 1987, but approved in 1999) and the average life expectancy is only nine months. There are no clinical trials to improve outcomes for the 3,200 people who are diagnosed every year. That is because there is no financial incentive for the pharmaceutical industry to run clinical trials for such a small patient group.
"I hope to base my Bill on a tried-and-tested approach to address this. The 1983 Orphan Drug Act was introduced in the USA to provide financial incentives to attract industry’s interest through an extended period of market exclusivity for a drug approved to treat an orphan disease, even if it were not under patent, and tax credits. When Orphan Drug act launched in 1983 only 10 drugs for orphan diseases were on the market for patient use, by 2015 550 were approved (Ref 1).
Ref 1: https://ncbi.nlm.nih.gov/books/NBK572052/
"I am grateful for the support of other MPs on this, in particular Dame Siobhain McDonagh MP who has done all the real work following the death of her sister (Margaret McDonagh) to glioblastoma."
The 2nd reading of the Bill will be on Friday 14th March and we will be supporting Scott in the run up to that and are looking to bring together other brain tumour charities and other charities associated with less survivable cancers to make sure that, as a community, we do our utmost to have that second reading well supported by attending MPs.
For the second year running Brain Tumour Research attended the New Statesman Future of Healthcare conference.
There were panel discussions on improving patient outcomes through the life sciences, future-proofing UK health, and creating a more productive and resilient healthcare system
Helen Morgan MP, Liberal Democrat Spokesperson for Health and Social Care, said that the new Government had begun to address some of the issues affecting health and care services, but “more is needed, and it is needed now”.
Lord Bethell, Former Minister for Innovation, praised the Government for its rhetoric on health. He called for a culture change within the health system, and that “the late-stage doctrine has run its course”, and that a more proactive approach to healthcare is required.
George Freeman MP, former Minister for Science whom we met at Conservative Party Conference, said that data for cancers needed to flow better, there needed to be more democratised clinical trials, and that charities must play a much stronger role in achieving this. Mr Freeman added that the rare and less common cancer sector can “drive democratisation and digitalisation”.
Dr Samantha Dixon, Medical Director at Biogen, said that the “problems experienced by the rare disease sector are reflective of those across the system – but more acutely felt by rare conditions nevertheless”. Dr Dixon asked the Government to focus on creating a better regulatory environment, where the regulator can work at speed.
The afternoon keynote was an "In conversation with Victoria Atkins MP", Shadow Secretary of State for Health and Social Care.
Her message to Government was “listen to charities”, and that their expertise is essential in the functioning of government.
She added that, as brain tumours are difficult to diagnose and to treat, charities such as Brain Tumour Research need to help Ministers to understand the benefits of good quality research.
The key take-aways from this year’s conference are that rare and less common cancers should be a priority for Government, as they can be a key UK strategic strength. Also, we need to see an improved drug regulatory environment, with timely access to medicines. These will help to change the story for brain tumour patients.
Evan is settling in to his role at Brain Tumour Research and we asked him to offer some comment on this week's budget.
His thoughts are that it underscores a renewed emphasis on healthcare and innovation, with key allocations such as £520 million for the Life Sciences Innovative Manufacturing Fund and £1.57 billion for NHS England aimed at enhancing surgical hubs and scanners.
These investments signal a broader commitment to improving healthcare infrastructure and tackling waiting times. The Chancellor's acknowledgment that “cancer deaths here are higher than in other countries” highlights the urgent need for reforms backed by increased funding, particularly in the forthcoming 10-Year plan. As we await further details on fund allocation, it is crucial to advocate for a dedicated cancer strategy that prioritises the unique needs of research into brain tumours, ultimately aiming to reduce cancer mortality rates in the UK.
That's it for this week, but we will be back next Friday and will have an update from an important conference on the Future of UK Life Sciences Regulation .
Please do take the time this weekend to ask your MP to join us at the APPG meeting later this month.
Wishing you all a peaceful week.
Hugh, Thomas and Evan
Published Friday 1st November 2024.