Orphans of brain cancer

Thirty years ago, being diagnosed with breast cancer was seen by many as a death sentence. Look how far we have come since then. According to the latest figures, 78 per cent of women are predicted to survive their disease for 10 years or more. In many other areas of cancer treatment, the improvements in survival rates have been astounding with more research, faster diagnosis and better treatments.

Yet, people diagnosed with brain tumours are still in a place that breast cancer patients said goodbye to long ago when little could be done and outcomes were poor. Less than 20 per cent of those diagnosed with a brain tumour survive beyond five years compared with an average of 50 per cent across all cancers. And it’s not just bad luck.

A House of Commons Petitions Committee report entitled “Funding for research into brain tumours” has found that ‘successive governments have failed brain tumour patients and their families for decades.’

What they mean is that, despite the fact that incidence and deaths from brain tumours is increasing, the total national spend on cancer research allocated to research into brain tumours decreased to just 1.37 percent in 2015. 16,000 people each year are diagnosed with a brain tumour and 80 per cent will be dead within five years.

We need to start by raising awareness about the problem, which affects a growing number of people of all age groups, and changing people’s perceptions that brain cancer is somehow the end of the line. We know that there are lots of potential therapies out there – ranging from drugs to gene therapies – that could dramatically improve outcomes – if only they could get off the shelf and into clinical practice. Clinical trials currently ongoing into brain cancer therapies can probably be counted on one hand.

The fact is that pharma companies do look at the market when they decide whether to invest millions to bring a prototype drug all the way through to human trials to the point where it can be prescribed to the general public. Drugs that might help a subgroup of brain tumour patients are unlikely to return their massive investment. So these ‘orphan drugs’ are often neglected.

In this case, we are advocating that 1) the government invest more into already existing clinical research centres, which focus on the ‘big’ cancer areas; ironically already the same cancers which benefit from huge amounts of research by biotech companies and pharmaceutical research and development teams. 2) Give space and time to NHS clinicians who work in this area but have no extra capacity to do pure research in between clinical lists and seeing patients. 3) Ring fence funds for brain tumour research.

We believe that pharma and biotech companies could be incentivised to develop ‘orphan drugs’ which will not necessarily make huge returns, by getting a licence which gives them marketing exclusivity for an extended period of time, up to 12 years.

Brain Tumour Research is also very interested in the area of repurposing drugs which already exist since this would be a quick relatively inexpensive way to bring therapies to patients. For example, we are supporting research into reformulating aspirin, which makes a suspension in water, so that it is completely soluble and able to pass through the blood-brain barrier. This research is being carried out by Prof Geoff Pilkington at the Brain Tumour Research Centre of Excellence at the University of Portsmouth. So far, this simple but effective drug is showing promising signs that it may be able to kill specific brain tumour cells, known as gliomas, while leaving healthy cells unharmed.

Brain cancers can be devastating, but they are survivable in many cases but significant research investment is critical if we are going to beat this disease. It’s not a lost cause and Brain Tumour Research is committed to stirring a revolution in attitudes across the board to ensure that people in the future have a hopeful prognosis.