Hello everyone
In my campaigning blog from the beginning of June 2023 I wrote that "the role of research was clearly illustrated at the American Society of Clinical Oncology (ASCO) annual meeting which was held last week", with it being stated at the conference that we are seeing “an unprecedented rate of innovation in oncology". That year there were reports of positive trial and study news in bowel cancer, blood cancer and lung cancer. My obvious conclusion to that update was that "we need progress to be in brain cancer too".
This year the picture remains the same – the headlines from ASCO are:
- Drug that ‘melts away’ tumours could replace surgery for bowel cancer, say doctors
- Scientists develop cheap and quick spit test for prostate cancer
- Extremely impressive’: melanoma jab trial results excite doctors
- Trial results for new lung cancer drug are ‘off the charts’, say doctors
All of this is to be applauded of course but still nothing report worthy from ASCO for brain tumour patients.
In the UK the picture remains disappointing as we learnt that NHS patients in England to be offered trials for world-first cancer vaccine. The German biotech company BioNTech is one of the companies partnering with the NHS on the trials.
One of our most tenacious campaigners made an enquiry to BioNTech about the likelihood of these trials being extended to brain tumour patients and the company replied that: “Unfortunately, we have to inform you that BioNTech is currently not conducting any clinical trials in the indication of brain tumours. At this stage we cannot provide any information about the potential expansion of the study program."
This looked to be on the cards following a question by Daisy Cooper of former Minister Stephenson just before Parliament was dissolved. Ms Cooper asked: "With reference to the press notice entitled Major agreement to deliver new cancer vaccine trials, published on 5 July 2023, whether brain cancer patients will be given access to the treatments and therapies made available through that programme."
The response from Mr Stephenson was that: "The Government’s partnership with BioNTech aims to provide up to 10,000 United Kingdom patients with personalised immunotherapies by 2030. As well as cancer vaccines, BioNTech has several other classes of cancer therapy under development, such as engineered cell therapies and antibodies. We are not able to comment at this stage on the exact pipeline of clinical trials that BioNTech will go on to launch in the UK, over the coming years."
So the company response whilst disappointing wasn't surprising.
The source of optimism last year was that Vorasidenib Offers Patients With IDH-Mutant Low-Grade Glioma (LGG) a Means to Delay Chemotherapy and Radiotherapy. Following patient activism (particularly one inspirational family) and political involvement there is now a route to therapeutic access for suitable UK LGG patients.
Whilst all business in the House of Commons and House of Lords has come to an end until after the General Election, in the devolved nations business continues, and we continue to have meetings with key stakeholders.
On Tuesday, along with our Scottish Cancer Coalition colleagues, we met with the Cabinet Secretary for Health and Social Care Neil Gray (pictured).
The Cabinet Secretary said his Government remained committed to the rapid cancer diagnostic roll-out. He stated he’d received great feedback, already, from primary care practitioners, consultants, and patients. One of the patients said it had saved his life.
Mr Gray also spoke about the genomic strategy which aims to improve genomic testing. He looked forward to continued cooperation with the life sciences industry and charities.
The Cabinet Secretary emphasised the importance of collaboration with the Scottish Cancer Coalition: "For improvement of delivery and reform, the coalition is going to be critical, making sure we're using the best of everyone."
At this week’s Cancer52 All Members’ meeting a presentation was given by RareCan – a company that specialises in helping people with rarer forms of cancer.
RareCan was founded in 2020 to help people who have been diagnosed with a cancer that falls outside the ‘big four’ (lung, bowl, breast and prostate cancers).
CEO Piers Kotting said: “We bring together a passion to do things differently. We want to work together to make a difference.”
RareCan is a consent and data driven organisation that works on improving patient access to clinical trial, simplifying pathways for patients and collaborating on projects.
We look forward to engaging with RareCan to explore all possible collaboration in the field of brain tumours.
Today, Friday, is the deadline for submitting or withdrawing a nomination for election (4pm) with the publication of statement of persons nominated coming at 5pm.
Get your manifestos at the ready and make contact over the weekend and let me know how it is all going.
Next week we will announce a campaigning webinar open to all where we can discuss best practice in getting ourselves heard and unite as the brain tumour campaigning community.
Wishing you all a peaceful time until next Friday.
Hugh and Thomas