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Report Urges Wider Genomic Testing Access For Brain Cancer

A new report led by Tessa Jowell Brain Cancer Mission (TJBCM) and researchers from the University of Bristol sets out key actions to widen access to genomic testing for brain tumours. Currently, just five per cent of adults in the UK with a brain tumour diagnosis have access to the testing, which could lead to more targeted and effective treatment.

How does genomic testing benefit brain tumour patients?

Genomic testing involves analysing the DNA of the tumour or cancer cells to identify genetic mutations that could drive the growth rates and patterns. This allows clinicians to develop more targeted therapies for brain tumour treatment that are tailored to the individual patient.

This more precise and personalised approach can improve patient outcomes, extending survival rates and easing symptoms. Genomic testing can also identify tumour types more accurately, and help clinicians understand which treatments the patient will respond to best.

It can also minimise the use of unnecessary or ineffective treatments that have disruptive side effects and can weaken the immune system, such as chemotherapy.

Genomic testing can also open up access to clinical trials to more patients, allowing them to undergo the most innovative new therapies that are not yet available as standard treatments. This can potentially extend the life-span of brain tumour patients, and also helps researchers to develop and refine better treatments that could benefit future patients.

About 12,700 people in the UK are diagnosed with a brain tumour each year in the UK, and currently only 12 per cent of diagnosed adults survive for more than five years. Compared to many other types of cancer, brain tumour research has been historically underfunded, and little improvement has been made in survival rates for the past 20 years.

How easy is it for brain tumour patients to access genomic testing at the moment?

According to the new report, less than five per cent of brain tumour patients in England have access to a key component of genomic testing called whole genome sequencing (WGS).

This restricted access remains, despite an NHS England study that recommended the testing to be particularly appropriate for brain tumours. The testing can give an insight into the most suitable candidates for clinical trials for example, and also identify the cancer mutations that can be treated.

Furthermore, the report authors noted that rates of access to WGS were unequally distributed around the country. The authors set out six actions that can be taken by the NHS, the charity sector, and individual brain cancer treatment centres.

Jess Mills, Tessa Jowell’s daughter and TJBCM Co-Founder said: “For patients, WGS is vital to possibly finding life-extending or miraculously, life-saving treatment which is completely targeted to the drivers of their cancer. It is very hard to bear that access is currently so limited.”

“WGS offers hope, which is essential for so many people who will currently have been given a year to live. We must do everything we can to unlock, and truly deliver this service for every patient.”

“Mum eventually did access WGS - but by that point for her it was too late. I often wonder if she would still be here if we’d been able to access it as soon as she was diagnosed."

Dr Nicky Huskens, TJBCM CEO, said: “The ambition to give all patients with a brain tumour access to WGS is unique in Europe. While the initial findings were not what we were hoping to see, the trend in the last two years has been upwards, which is encouraging.”

“With the help of the professionals involved, we have been able to precisely identify the pain points as well as a set of achievable recommendations. Once embedded, coupled with the motivated neuro-oncology workforce in the UK today, I believe the NHS can further cement its status as a world leader in genomic testing and precision medicine.”

The report recommends that more neuro-oncology genomics coordinators be put in post to boost access to clinical trials for brain cancer patients, and it also calls for further investment in genomics training for clinicians. Furthermore, it calls for the establishment of a  ‘Brain Tumour Precision Medicine Board’, to give patients more access to appropriate treatments.

If you would like more information about brain tumour treatment, please contact Mr Andrew McAvoy of Queen Square Neuroscience Health Centre.

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