Hello everyone,
This week there have been two significant steps on the route for the Rare Cancers Bill becoming the Rare Cancers Act and next week is one of great significance too.
The Rare Cancers Bill is a Private Members Bill brought forward by Dr Scott Arthur MP and is aimed at improving outcomes for people with rare cancers through research, clinical trials, regulatory review and the naming of a national speciality lead.
Brain Tumour Research has been supporting Dr Arthur with his work on this from the very outset.
On Monday (30ᵗʰ June), the Bill took a major step forward as the UK Government confirmed the funding needed for it to progress. Then, on Wednesday (2ⁿᵈ July), the Bill sailed through its Committee Stage with no amendments requested. Once again Minister Ashley Dalton was there to personally, and on behalf of the Government, state support for the Bill.
A full record of yesterday’s events can be found here: Rare Cancers Bill - Hansard - UK Parliament.
Pictured above are the members of Committee following Wednesday’s meeting.
Next week, Brain Tumour Research will be part of a team promoting the Bill to the pharmaceutical industry, to other charities with a rare cancer focus, and at a drop in event at the House of Lords.
This is where we need your help.
If you have any connections at all to a member of the House of Lords, please email them using this template and copy me in: Hugh@braintumourresearch.org
Subject: You are invited to an All-Peers drop-in event to learn about the Rare Cancers Bill Tuesday 8th July 12:00-14:00 Committee Room 2A
Dear <MP's NAME>
You are invited to an All-Peers drop-in event (sponsored by Lord Moylan) to learn about the Rare Cancers Bill.Dr Scott Arthur MP’s Private Member’s Bill on Rare Cancers is progressing through the Commons stages and is expected to enter First Reading at the Lords soon. In anticipation, peers are invited to hear about and discuss the Bill’s aims and content.
Drop-in date and time: Tuesday 8th July 2025, 12:00-14:00
Drop-in location: Committee Room 2A, Houses of Parliament
The Rare Cancers Bill represents a significant opportunity to advance rare cancers research, an area that has long struggled to secure the investment and attention it urgently needs. More than 30 charity partners - including Brain Tumour Research (for which I am an active campaigner), The Brain Tumour Charity, and Pancreatic Cancer UK - are actively supporting efforts to push the Bill forward. Representatives from these organisations will be present on the day for discussion.
As this is a drop-in session, you are welcome to attend at any time that suits you - there is no requirement to stay for the full duration.
Should you have any queries about the Bill or would like to RSVP, please reply to Hugh from Brain Tumour Research who is Cc’d.
Kind regards,
<YOUR NAME>
On Friday 11ᵗʰ July, the Bill receives its third reading in the Commons and then, barring an extraordinary turn of events, it will cross for scrutiny in the House of Lords. We want as many members of that House to be well informed about the Bill as early as possible as we do all we can to ensure a smooth passage over the next part of the Bill’s journey toward Royal Assent and becoming the Rare Cancers Act 2025.
Your help in achieving this would be hugely appreciated.
Brain Tumour Research is joining The Neurological Alliance and more than 10,000 voices from across the UK in calling for urgent Government action, following the findings of My Neuro Survey 2024 – the UK’s largest ever patient experience survey of people with neurological conditions.
The results paint a troubling picture: only one in three people says their healthcare needs are being met, and nearly half feel unsupported by the health system. Access to specialists remains a significant challenge, with over a quarter unable to see a neurologist or specialist nurse in the past year. Mental health support is alarmingly lacking, with 69% unable to access needed neuropsychiatry services.
Despite these failings, the survey reveals the positive impact of accessible, high-quality care. When people can access support, 72% feel comfortable with their clinicians and 57% report receiving clear information.
We cannot ignore the voices of more than 10,000 people who took part in this survey. The Government must act now for the one in six living with a neurological condition. We urgently need a workforce plan, proper funding, and implementation of national guidance. Lives – and quality of life – depend on it.
Brain Tumour Research urges everyone to sign the open letter to Secretary of State for Health and Social Care, Wes Streeting, and demand meaningful, immediate action.
Sign the open letter now and stand with the one in six.
During a tumultuous week at Westminster, we were contacted by the office of Labour MP for York Central, Rachel Maskell, who was seeking support for a reasoned amendment designed to defeat the Welfare Bill at Tuesday’s second reading vote. She gained the backing of 62 MPs and 138 groups such as charities, including Brain Tumour Research. In the event, the Bill passed but we know the historic, current and future importance of PIP to some members of our community and we were proud to stand with you on this occasion and we would do so again.
Yesterday, the Department for Health and Social Care published ‘Fit for the future: 10 Year Health Plan for England’.
Although much of the content has been leaked out in dribs and drabs over recent weeks it is worth restating that the plan has a mission to improve health, and aims to reform the health system, structured around three shifts: from a service treating sickness to one focused on preventing illness occurring in the first place; from delivering care in hospitals to delivering care closer to home, in communities and in primary care; and digital transformation of service delivery.
On first reading our eyes were drawn to the aim of establishing “new global institutes with the ambition to help the UK lead the world on science and innovation and speed up clinical trial recruitment. By March 2026, clinical trials set-up time will fall to 150 days.”
There is also likely significance for our community in the expansion of NICE’s technology appraisal process to cover devices, diagnostics and digital products.
There are ambitious plans for a growth in adult and paediatric genomic testing and we are particularly keen to see how the NHS App might be used for quick, UK wide trial recruitment.
We will take a deeper dive into the plan in the coming days and deliver a long form response.
Returning to the Rare Cancers Bill, it requires the Government to review UK-wide law on marketing authorisations for “orphan medicinal products” that diagnose, prevent or treat cancer.
This brings the Medicines and Healthcare Products Regulatory Agency (MHRA) into the spotlight.
A story in The Times this week suggested that “patients will get access to life-saving medicines up to three months earlier under a new regulatory team as part of Labour’s 10-year plan for the NHS.”
The plan is for the MHRA and National Institute for Care and Excellence (NICE) to join forces creating a framework that means licensing and patient access decisions are made at the same time.
This is exactly what we were addressing when working with our APPG Officer Sarah Owen MP to send in these two questions to Wes Streeting:
“To ask the Secretary of State for Health and Social Care when he expects the Medicines and Healthcare products Regulatory Agency will make public their decision on licensing the personalised immunotherapy developed to treat the malignant brain tumour glioblastoma, DCVax-L.”
“To ask the Secretary of State for Health and Social Care whether his Department plans to work with the National Institute for Health and Care Excellence to expedite market access to the personalised immunotherapy developed to treat the malignant brain tumour glioblastoma DCVax-L via the NHS.”
You can read the ministerial responses here and we are following up on these answers with Ms Owen.
For our community, it would be a tragedy if new therapeutics offering promise for brain tumour patients were caught in a glacial, linear regulatory journey meaning the pathway to patient access continues to be counted in years rather than the months a clinical priority demands. We look to the Government’s 10 Year Health Plan, its industrial strategy through the life sciences sector plan and the forthcoming National Cancer Plan to make sure this doesn’t continue to happen.
Last week we wrote about the MHRA seeking feedback on their draft guideline on the use of external control arms based on real-world data to support regulatory decisions. The deadline for receiving feedback has now been extended by a fortnight until 11:59pm on Monday 14ᵗʰ July.
This is a hugely complex issue that polarises opinion but shows the willingness of the MHRA to look at doing things differently in the rare and less common space and we applaud this endeavour. Clinical trials are desperately needed for all rare diseases, especially brain cancer.
Here is a chance to have your say.
So, this week whether it is by writing to a Lord or submitting feedback to a government body please, please get involved and keep amplifying the voice of the brain tumour community.
That’s it for this week – we’ll be back with another update next week.
Wishing you all a peaceful time until then.
Karen, Hugh and Thomas
