Hello everyone,
On Monday, Brain Tumour Research attended the Scottish Cancer Conference in Glasgow, hosted by Cancer Research UK.
We were pleased to be in attendance as provider of the Secretariat to the Cross-Party Group on Brain Tumours.
In collaboration with the Tessa Jowell Brain Cancer Mission (TJBCM), we organised a well-attended panel discussion on genomic testing. The aim of this session was to highlight the urgent need for equitable, system-wide access to genomic testing across Scotland, and to build political and clinical momentum towards creating a sustainable and flexible genomics service.
This issue is particularly critical for brain tumour patients, as recognised by Finlay Carson MSP, Member for Galloway and West Dumfries and Co-Deputy Convener of the Cross-Party Group on Brain Tumours (he is pictured below at the event with Jana).
Finlay stated: “Brain tumour patients in Scotland are potentially being denied access to clinical trials due to a lack of routine testing. We are calling on the Scottish Government to ensure that 100% of brain tumour patients in Scotland are offered genome sequencing. The technology is there – let’s use it to make a difference. Together, we can find a cure.” “Brain tumour patients in Scotland are potentially being denied access to clinical trials due to a lack of routine testing. We are calling on the Scottish Government to ensure that 100% of brain tumour patients in Scotland are offered genome sequencing. The technology is there – let’s use it to make a difference. Together, we can find a cure.”
The session was highly productive, with valuable insights shared by clinicians, representatives from other cancer charities whose patients also benefit from genomic sequencing, and a parent whose son was diagnosed with a brain tumour and who had to fight tirelessly to access genomic testing.
As we look ahead to our next steps in Scotland, we will continue to work closely with our stakeholders to ensure Scottish brain tumour patients benefit from direct policy action and we will strive to secure the next Scottish Government’s commitment to increase brain tumour research funding.
We would like to thank the other MSPs we engaged with at the conference, including Miles Briggs and Jackie Baillie, for their continued support to improving outcomes for people affected by brain tumours in Scotland.
Once again it has been a big week for brain tumour questions at Westminster.
We were pleased to see explicit mention of brain cancer patients in this recent answer from Minister Dalton to a question from Martin Wrigley MP, asking about “steps she is taking to increase cancer survivability rates in Devon”. Minister Dalton said: “the plan will include further details on how the Government will improve outcomes for cancer patients, including brain cancer patients”.
Daisy Cooper MP (pictured) received a response to her question, asking the Secretary of State for Health and Social Care what discussions his Department has had with (a) NICE and (b) Servier on the barriers to approving Vorasidenib for use by the NHS for the treatment of low grade glioma.
Meanwhile, over at the House of Lords, there were responses to two questions from Brain Tumour Research advocate Lord Hunt of King’s Heath which are here and here.
The first question relates to tissue storage and, as well as that being a key discussion point in Glasgow this week, it was also the subject of a piece in The Sunday Telegraph from Professor Kathreena Kurian (pictured) – a great campaigner and friend to Brain Tumour Research.
The TJBCM report mentioned in this piece was launched yesterday. For further information and to read the report, please click here.
Brain Tumour Research convenes a cross-charity group to look at the whole area of tissue storage and access to whole genome sequencing and we work closely with Professor Kurian on this matter and look forward to progressing some of the issues raised in this piece (and other issues) as part of our campaigning work.
The second answer to Lord Hunt from Baroness Merron is particularly encouraging where it mentions a ‘new approach’ aimed at “maximising the United Kingdom’s clinical trials’ potential and working with the life sciences sector to make the UK a leading location for brain tumour research.”
We look forward to working with the Government to nail down exactly what that means, what it looks like and how we progress with the approach in the coming weeks, months and years.
Finally this week, we thought that you’d be interested to listen to this episode of NICE Talks. The folks at NICE join representatives from the MHRA to discuss how NHS patients will be able to access medicines up to six months faster through an aligned MHRA and NICE pathway. This joined-up thinking is key as we seek to expedite access to UK patients for the most promising new therapeutics.
A big week next week with news from Northern Ireland, a meeting of all the cancer All-Party Parliamentary Groups (APPGs) and NICE having their second meeting to consider the NHS reimbursement for vorasidenib.
We’ll be back with the update next Friday – wishing you all a peaceful time until then,
Karen, Hugh, Katherine and Jana.
