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Brain tumours kill more children and adults under the age of 40 than any other cancer

Voting, talking and supporting

by Hugh Adams

On Tuesday we led the meeting of the All-Party Parliamentary Group of Brain Tumours under the Chairmanship of Derek Thomas MP.  

The briefing document produced for attending Parliamentarians was headlined as Remembering Amani – a legacy of change? 

L-r Amani’s Clinical Nurse Specialist Tanya Betts, Amani’s parents Khuram Liaquat and Yasmin Stannard, Dr Anup Vinayan and Dr Thomas Carter (Amani’s Neuro-oncologists)  

On Tuesday MPs spent more than three-and-a-half hours holding 18 votes in the Commons. 

This period of intense voting activity started at 17:00 – the same time as the APPG.  

Some valiant MPs were pretty much running from voting duties to spend a few minutes with us in Committee Room 15 before the bell rang and they had to dash off again.  

Sarah Owen MP and Greg Smith MP were alongside Derek with us for short periods while other MPs, who are normally first on the team sheet like Hilary Benn, expressed their disappointment and sent apologies for not joining us. 

Tuesday evening, whilst not unparalleled (evidently the voting patterns around finalising the Brexit deal were hectic too) was unusual and disappointing for us and more particularly for those who had travelled in expectation of engaging with MPs.   

The people in the room who had traveled from Cornwall, Cardiff, and Pendle made good use of the time though and the mix of both personal and clinical perspective was very valued.

Two MPs went away with questions to table before next week when Parliament goes into recess, and these are enquiries of the Secretary for Health into whole genome sequencing for brain tumour patients and tissue storage, more particularly the use of fresh/frozen storage that enables the potential for testing for personal vaccine suitability as opposed to standard storage of tissue in formalin-fixed, paraffin-embedded (FFPE). 

The APPG also gave us an opportunity to share Amani’s story and our campaigning endeavours with a wider audience on BBC TV and you can watch Tuesday evening’s news item here. 

Amani’s parents Yasmin Stannard and Khuram Liaquat 

This week we have another update on what Will Quince has been up to.  

At the monthly Health questions in the chamber of the House of Commons Brain Cancer Treatments also on Tuesday, he agreed to talks after Labour pressed for action on glioblastoma. 

During the short debate Shadow health secretary Wes Streeting praised Labour colleague Siobhain McDonagh for her “outstanding” campaigning work after her sister’s experiences. 

Mr Streeting told health questions in the Commons: “Over decades now we’ve seen no improvements in outcomes, no drug trials of any seriousness and no mandatory training of oncologists. 

“There are challenges, I know, to make sure that for families like Siobhain’s, like Margaret’s and thousands of each year, that glioblastomas aren’t simply a death sentence.” 

Mr Quince said: “I join him in paying tribute to (Ms McDonagh), especially after the tragic loss of her sister, for all the work that she’s done campaigning on this issue. 

“I have spent a significant time on this issue. I’ve met with her, also (Liz Kendall, Labour MP for Leicester West who Brain Tumour Research briefed ahead of March’s Brain Tumour Debate), campaigners, charities and other honourable members from across this House. 

“Funding for research is available.

“ I know, having spoken with the Secretary of State (Steve Barclay), he is as keen as I am to work with colleagues from across this House. 

“There are issues that transcend party politics – this is certainly one of them.” 

This week we received written responses from Minister for Health and Social Services Eluned Morgan MS, in Wales, and Cabinet Secretary for NHS Recovery Health and Social Care Michael Matheson MSP. 

Thanks to the Members of the Senedd and Members of the Scottish Parliament for writing to ministers following their respective brain tumour debates. 

Minster Eluned Morgan, referenced the recent brain tumour research debate where she highlighted many of the developments underway in Wales.

She reemphasized that cancer research must be seen as a “global endeavour.”  She added that cancer “has been the single biggest area of Welsh Government health research investment and the new Wales Cancer Strategy provides a strategic platform for coordinating cancer research in Wales.

Ms Morgan said that it was crucial that “we maximise on the mutual benefits of partnership working in cancer research and collaborate widely with charities such as Brain Tumour Research.”

She extended an invitation to Brain Tumour Research to meet with her officials in the Research and Development (R&D) division, in the first instance, to understand the charity’s ambitions and discuss opportunities for collaboration with the Welsh research community.

We look forward to this opportunity. 

Cabinet Secretary Michael Matheson expressed that the Scottish Government “recognises that research is essential if new and effective approaches to the diagnosis and treatment of brain tumours are to be developed.” 

Mr. Matheson said that the recent Cancer Strategy for Scotland stated that a key component was to develop a “flourishing research and innovation ecosystem across all tumour types and to embed research, innovation and data capture across all services.”

The Chief Scientist Office (CSO) will continue to support open competitive funding schemes for applied health research and fellowships across the range of health challenges, including cancer.

The Scottish Government will also work towards tackling health inequalities and providing access to care in clinical trials.

This includes “providing equitable access to care in clinical trials, which is an integral part of NHS cancer care.” He said efforts would be made to ensure that clinical and academic researchers within the area of childhood brain tumours would be “aware of the funding opportunities available.” 

The Scottish Minister ended by pledging “to work to maximise the amount of research in brain tumours both in adults and children taking place in Scotland” and extended an invitation to Brain Tumour Research to meet with officials from the Chief Scientist Office to discuss the recommendations from the All-Party Parliamentary Group, Pathway to a Cure – breaking down the barriers, in more detail. 

At this week’s Cancer52 meeting (alliance of over 90 organisations, united in improving the future for everyone affected by rare and less common cancers), Dr Ravindhi Murphy spoke about a clinical trial project led by the University of Manchester. 

DETERMINE (Determining Extended Therapeutic indications for Existing drugs in Rare Molecularly defined Indications using a National Evaluation platform trial) is a multi-drug precision medicine trial for adults, teenagers and children with rare cancers, sponsored and managed by Cancer Research UK’s Centre for Drug Development with commercial partners Roche and Novartis and led by the research team at Manchester University. Also collaborating on the project are researchers from the Royal Marsden NHS Foundation Trust, The University of Birmingham, and the Christie NHS Foundation Trust with contribution from the adult and paediatric Experimental Cancer Medicine Centres (ECMC) network. 

The DETERMINE trial is exploring whether existing licensed drugs – those that are already prescribed by doctors for more common types of cancer – could also benefit patients with rare cancer types that the drug isn’t currently licensed for. 

Dr Murphy talked about the positive collaborative work and data pooling happening with EU partners.

The consortium consists of altogether 24 partners, including nine beneficiaries and fifteen associated partners.

A key objective of the consortium is to develop a shared data platform to enable data sharing between institutions and to aggregate data and evidence for overlapping cohorts to support review by regulatory agencies and payors. 

The trial hopes to provide new treatments for those who have run out of options, but also to improve survival rates for people with rare types of cancer. 

Earlier in the update we mentioned the BBC news item looking at Amani’s family coming to Westminster for the APPG.

We achieved another TV story this week (to be broadcast over the weekend) the background to which absolutely stopped me in my tracks with its sadness and poignancy. 

A man wrote birthday cards for his twin daughters to be opened over the next 30 years before he died from a brain tumour.  

Following his diagnosis with a tennis ball-size astrocytoma in 2015, Nick Keenan underwent two debulking surgeries, radiotherapy, infusion and oral chemotherapy, prescription cannabinoids and a number of natural remedies.

Nick with his wife Victoria and twin daughters, Rose and Sophia 

Sadly, he died in November 2015, nine months after being told his tumour had developed into a glioblastoma (GBM).  

Nick was just 34 when he passed away, leaving his wife Victoria and twin daughters, Rose and Sophia, who were just 17 months old at the time.

Touchingly, he wrote his daughters birthday cards for the first 30 years of their lives so he could “be with them in spirit as they celebrated their birthdays without him”.  

Now, Victoria is sharing her husband’s story to encourage people to sign our petition to “give young families, like mine, the chance of a future together”.

She said: “Brain tumours are the biggest cancer killer of children and young people under the age of 40, yet they have received just 1% of the national spend on cancer research since records began in 2002. This is tragic and has to change. Brain cancer is such a complex and difficult cancer to treat and the only way to improve treatment options, or to find a cure, is through research.

We, therefore, owe it to our loved ones to sign this petition.”  

Our petition is calling on the Government to ring-fence £110 million of current and new funding to kick-start an increase in the national investment in brain tumour research to £35 million a year by 2028.  

Sign now to help us achieve our goal of 100,000 signatures in the hope of prompting a parliamentary debate: 

On Friday I am supporting a corporate golf day raising funds for Brain Tumour Research.

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