The campaigning week began with a piece in the Sunday People (in print) that was carried by the Sunday Mirror online too. The subject was the very emotive one of patients and families having to research, access and self-fund treatments overseas because there are no NHS treatment options. The story progressed this week as we commented on radio and television about Gorgeous George’s story, George and his family were one of the stories featured in Sunday’s piece. Louise and Matt, George’s parents wrote on George’s GoFundMe page that “we need to ask you for your help one more time as we now need to get George home.” En route to the US for a Car T Cell trial, George became very poorly on the flight. He has since undergone urgent surgery to be stable enough to fly home and for his mum and dad “our priority is to get him home as quickly and as safely as possible so that he can be with his brother, sister and the rest of the family.” Louise was on BBC local radio talking about the nightmare that they are currently living, the sky-high costs the family were incurring just to be in the US, the medical costs and the difficulties in obtaining medical insurance. She also said that the levels of support from friends, and indeed from strangers, has been extraordinary.
This is such poignance here and journalists reporting on the story have told us that they, themselves, felt ‘angry’ at this family having to travel to get vital treatment. We understand that anger, of course we do, but such strong emotions must be tempered with some positivity and optimism because as campaigners not to do so takes us down a blind alley of despair without hope. We must retain hope because that is what will guide us on the route to change.
We must not maintain negative thoughts however bleak it seems.
We need new options for UK brain tumour patients. We need more UK clinical trials. We should review the ways trials are conducted to see if we can make it easier or more practical for them to be accessed from different countries without the need for uprooting patients and their families. Not every trial will be available everywhere though, but shared learning across the worldwide research community (as mentioned last week) must be the way forward so what has worked in, hypothetically, San Diego can be quickly incorporated into the clinical portfolio in, say, Liverpool. Money directly into the NHS, as has been suggested to us a number of times this week, is not the answer, as the pathway to improved access to clinical trials and bringing new therapeutics to market begins on the scientist’s bench.
Another area that the piece in the paper brings to light is a constant one about funding for adult or for paediatric brain tumour research. We are of course proud of the paediatric work taking place at our QMUL centre, with three separate funding announcements being made in 2021, and it has been explained that unlike research into adult tumours where there will be relevance across tumour types, adult and paediatric tumours are totally different because one is a disease of growth and one is a disease of ageing. For those of you with a keen interest in this area you may find these articles illuminating ‘ Brain tumours across the age spectrum: biology, therapy, and late effects’ and What Are the Differences Between Adult and Childhood Brain Tumours? What about DIPG though and Gorgeous George although only 13 has a GBM diagnosis – surely that’s an adult tumour? No two GBMs are alike indeed tumour heterogeneity is just one of the complexities of a GBM and what makes them such a cunning foe.
With so much complexity the research net must be spread wide with avoidance of duplication and routine collaboration and communication of learnings. In our 2019 Manifesto we said “We will advocate for the creation of a national register of all site-specific cancer research to track all research work, grants and results to avoid duplication and enable collaboration A national register would allow researchers, universities, research institutions and the Government to present in one place exactly what research is being funded and the results that are being achieved. Furthermore, all relevant stakeholders would be able to easily see what diseases and specific cancer sites are receiving funding and how successful this funding is. It will open up the debate about need and value for money, as well as prevent duplication and encourage collaboration across the brain tumour community”
One of the most frequent questions asked of us in media interviews is “What causes brain tumours?”. The answer is that no single, definitive cause has yet been identified for primary brain tumours due to the complex and unique health history for each patient.
Basically – we do not know what causes a brain tumour
This makes it impossible for politicians to strategise around prevention because, if for example high fat or processed food were found to be a causal factor in a particular cancer, action could be taken to hike prices or label risky foodstuffs. Similarly with alcoholic drinks, sugary soft drinks, and of course tobacco products where government action in the face of overwhelming health concerns has led to societal change in the UK with hugely declining rates of those of us who smoke. But you cannot legislate to encourage behaviours that prevent a brain tumour diagnosis. It is an indiscriminate disease, and we don’t know what causes it.
But if we can’t prevent then we can predict, as mentioned again last week, hopefully one day being able to act at the point of tumour genesis, and we can protect through treatments, new treatments that come from research.
The Government’s Health and Care Bill is currently in Committee Stage in the House of Lords and, on Monday evening, the call from the life sciences community for the Bill to enhance research was debated. Last week, the Association of Medical Research Charities (AMRC) and fourteen organisations from across the life sciences community developed a briefing for Peers calling for the Bill to incorporate an enhanced research mandate in legislation. The briefing supported amendments calling on eligible NHS organisations to conduct clinical research, and highlighted the benefits embedding research in healthcare would deliver. The briefing can be read here. The amendment was debated, as all amendments must be in the House of Lords, but was not taken forward by the Government however we are pleased it was discussed and what was said in the debate now becomes record, to be taken forward again at a later date
So, the embedding of clinical research into healthcare won’t be taken forward quickly but we will retain our optimism that it will be one day.
No one I have quite met at Brain Tumour Research personifies the indomitable, can do positivity and general spirit of brain tumour patients like Ben Lindon. This is a link to a video I made with Ben about the importance of leaving a legacy and his blog, which is a personal account of some of his darker moments, has just been posted on our website here.
Ben continues to plan fundraisers for Brain Tumour Research, and we will continue to fund research to understand the cause of, and cures for, brain tumours because that must be the pathway to our shared vision.
The more we understand the cause the fewer families, like George’s, will be devastated by the effect.