Brain Tumour Research Funding

Sarah Owen Excerpts

Thursday 9th March 2023 Commons Chamber

[Sarah Owen (Luton North) (Lab)]

I thank the hon. Member for St Ives (Derek Thomas) for securing this important debate. It has truly been a privilege to sit here listening to the heartfelt, knowledgeable and personal speeches that we have heard today. I am sure that everyone will share my awe at the bravery of my hon. Friend the Member for Mitcham and Morden (Siobhain McDonagh). She spoke not only as a formidable MP, but as a formidable sister. I also pay tribute to the ongoing work of Brain Tumour Research and the APPG on brain tumours for their dedication to raising awareness of the issues facing the brain tumour community and their efforts to improve research, treatment, and care outcomes.

Last week, I met my constituents Khuram and Yasmin, who bravely shared their daughter Amani’s story with me, as I will share it in the House today, in an effort to bring about the change and progress that they and we all want to see. Amani was diagnosed with a grade 4 glioblastoma after collapsing on her 22nd birthday in April 2020. As we have heard, treatment options available in the UK for glioblastomas are very limited and the standard of care Amani received failed to stop the tumour growing.

After discussions with Amani’s medical team, the family decided the best and only way forward would be to access a new trial drug, ONC201. Thanks to the generosity of family, friends and strangers, more than £100,000 was quickly raised to help finance that, and her father Khuram took it upon himself to fly to Germany to purchase ONC201—a father who should have been by his daughter’s side, having to raise funds and travel to Germany to get the drug that she needed.

Amani was a strong advocate for brain tumour research and campaigned tirelessly against the lack of funding to tackle this cruel disease. Throughout her ongoing battle, she was a true inspiration, launching a podcast to discuss her diagnosis, organising fundraising events in support of Brain Tumour Research and even receiving a master’s degree at her bedside. Despite her continued strength and determination, Amani lost her fight in February last year and died at the age of just 23. Her family were and are completely devastated, but have continued to campaign ever since in her memory.

Amani’s story and her parents’ determination to honour her legacy cannot fail to move us. However, while the fundraising efforts of that family and every family like them are massive achievements individually, they are a drop in the ocean compared with what we know is needed to tackle brain tumours effectively. We are all aware of the Government funding promise made in May 2018—a total of £40 million made available by the National Institute for Health and Care Research—yet the recent report by the APPG on brain tumours found that, as of January 2023, just £15 million had been awarded from that pot, £6 million of which was not easily identifiable as relevant to brain tumours, as we have heard.

When I spoke to Khuram and Yasmin, their biggest concern was that the funding that is so desperately needed has not materialised, despite the promises. We know that investment in research drives survival rates. As Khuram and Yasmin pointed out, the development and deployment of the covid-19 vaccine is a clear example that breakthroughs can happen in a very short time when funding is available and the political will is there.

Importantly, why are patients and families told to be satisfied with a system where we see unequal levels of care depending on the disease or illness that a person has? When it comes to brain tumours, why do family, friends and the wider community have to dip generously into their own pockets to ensure that people such as Amani have access to medical treatment and newly developed medicines in the hope of fighting their diagnosis?

Tragically, as we have heard from many right hon. and hon. Members, the continued lack of funding for brain tumour research means that Amani’s story is not uncommon. We have heard that brain tumours remain the biggest cancer killer of children and adults under 40. Unlike most cancers, brain cancer incidences are rising, yet no new treatments have been brought forward and the five-year survival rate for patients is still just 12%.

Another Luton resident fighting stage 4 glioblastoma is Moshin, a young father of three and husband. His family are left praying in hope and fundraising at one of the most distressing times of their lives. Should any family dealing with cancer or any health issue be spending their precious time and energy on fundraising for treatment? Another of the main issues identified in the APPG’s report was that the current funding system is unfit for purpose, because it functions in an insular manner. As a result, researchers are moving away from the field of brain tumour research towards other disease areas with more readily available and secure funding.

I will move on to some specific questions to the Minister. Will the Government hear the calls that have been made today and focus on delivering a strategy for adequately resourced, targeted and funded discovery and clinical research, with a joined-up approach from basic science through to clinical trials? Will the Minister share with us where the remainder of the promised money is, and will there be some transparency about where and how the money has been allocated? My right hon. Friend the Member for Leeds Central (Hilary Benn) asked powerfully about where some of the successful bids have come from, why they have been successful and, importantly, why others have not been.

Finally—I hope that the Minister will say yes to this one, because it requires him to make not a spending commitment, only a commitment to spend time with Amani’s parents—will he meet me and my constituents, Khuram and Yasmin, to hear from them directly about the impact that brain tumours have had on their family and how the Government can deliver change to ensure that other families in their position do not have to suffer such a tragedy? I know that it will mean so much to them that the issue is being debated in the House, but I also know that empty words will not cut it. We need firm commitments and an explanation, because no family in Luton North or anywhere else should have to go through what they have.

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[Mr Deputy Speaker]

Thank you very much. May I say what a privilege it has been to chair this debate?

Question put and agreed to.

Resolved,

That this House has considered brain tumour research funding.

[Sarah Owen (Luton North) (Lab)]

On a point of order, Mr Deputy Speaker. We understand that the Government have just announced huge delays to High Speed 2 and other road and active travel projects via written ministerial statement at nearly 5 o’clock on Thursday afternoon. That is an outrageous attempt to avoid scrutiny for what is a very significant announcement that should have been made to this House first. Tens of thousands of jobs and billions of pounds of economic growth depend on that project. The Secretary of State should have had the decency to come to the House and explain to Members why the Government are doing that. Have you been notified of any ministerial statement on this important topic?

[Mr Deputy Speaker (Mr Nigel Evans)]

I thank the hon. Lady for her point of order and for giving forward notice of it. She is right that a written ministerial statement was laid not so long ago. There are two points here. The first is that Mr Speaker has made it absolutely clear that announcements of this type should be made to the House of Commons first—we understand that journalists were briefed this afternoon.

The next Transport questions is after Easter, and we are not sitting tomorrow or this weekend, clearly, so it will be at least three days before Members have an opportunity to question Ministers about what is a substantial statement. Although the Chair does not have the power to bring Ministers to the Dispatch Box, there has to be an expectation that Members will have the earliest opportunity to question Ministers on this statement. I hope that the Minister will take that back to the Department.