Hello everyone,
This week brought a landmark moment for patients and for all of us fighting for change. On Monday, the government announced a new UK-US trade deal for medicines – a breakthrough that could transform access to innovative treatments. The deal includes an agreement to zero tariffs on UK pharmaceutical exports and commits to a 25% increase in investment in innovative, safe, and effective treatments.
What does this mean for patients?
- Greater flexibility in NICE appraisals. The cost-per-QALY (quality-adjusted life year, which measures the impact of a disease on quality and quantity of life and is used to assess the value of medical intervention) threshold is rising, making it easier for innovative medicines to be approved
- A new value set for health-related quality of life. Decisions will better reflect what matters most to patients
- A cap on rebate rates for branded medicines. The amount of money that pharmaceutical companies have to pay back to the NHS through the voluntary scheme for branded medicines pricing, access and growth (VPAG) will be capped, ensuring pharmaceutical companies can invest more in research and access
We were approached by DHSC to contribute to the announcement and our CEO Dan Knowles summed it up perfectly:
“This new flexibility in the NICE cost effectiveness model will bring our patients greater hope.
“An invitation to access clinical trials should be an expectation for all cancer patients and the increase in life sciences net spend sets us firmly on the route to achieving this.
“Our sincere hope is that this announcement takes us further along the collaborative pathway for government, the pharmaceutical industry and patient advocacy groups to make a difference in the options and outcomes for the most important group of all – patients.”
You can read our full coverage here.
Why this matters:
The Charities Medicines Access Coalition (CMAC), which we belong to, along with 30 health charities, made the following statement:
"This agreement could mark a significant step forward for patients and has the potential to enhance access to proven innovative medicines. Government now needs to build on the foundation laid by these changes and ensure that patients see the benefits. People living with cancer, long-term conditions and other serious illnesses need confidence that they will be able to access innovative new medicines that they could benefit from. Keeping patient needs at the heart of the process is essential, and we look forward to working with all stakeholders to ensure that it delivers real benefits for people across the UK."
Children deserve better:
A new report from the Tessa Jowell Brain Cancer Mission revealed stark inequalities in care for children with brain tumours.
Findings include:
- Delays in genetic testing and whole genome sequencing
- Shortages of rehabilitation staff in some centres and access to specialist rehabilitation for children who live far away from the hospital
- Inconsistent access to a play specialist or education support – very limited access to clinical trials for patients who lived far away from the hospital or centre
Dr Karen Noble, our Director of Research, Policy and Innovation said: “Children with brain tumours are being denied access to clinical trials due to inconsistent routine testing or lengthy turnaround times for results.
“Whole genome sequencing of brain tumour tissue reveals powerful information that unlocks access to clinical trials based on cancer biology rather than location in the body. Without it, the pool of trials that patients can be part of shrinks.
“We are calling on governments across the UK to ensure that 100% of brain tumour patients are offered genome sequencing and that access to clinical trials is expanded.
“The technology is there – let’s use it to make a difference. Together we can find a cure.”
Looking ahead:
We’ve also published a new blog: “How we influence the UK Government and Devolved Nations to fight for change for the brain tumour community”. Read it here.
With major announcements expected early next year and big developments in the devolved nations, 2026 will be a year of opportunity – and we need your energy and commitment to make it count!
Thank you for standing with us. Every email you send, every conversation you spark, every action you take brings us closer to a future where patients have the options and outcomes they deserve.
Together we are unstoppable.
Wishing you all a peaceful time until next week,
Karen, Hugh, Katherine and Jana.
